DownBlogger

Well, hello there!

2012-01-24T12:20:00.000-05:00

I have been asked recently about this blog, and my lack of posts the last few years. Yes, life took over and I got sidetracked. I was surprised, actually, at how many people have asked me to get back at it. The focus of this blog has always been Down syndrome, and frankly, I kinda sorta thought that "older kids" with DS just werent that interesting to new parents. Silly me! I remember when Ciarra was small, that is all i wanted to see. It was a window into the world of my future. What was possible? What was scary? Could reading about it make it less scary? It could, it did, and it can.

So, here I am. I promise to try to be a better blogger. And thank you for the many emails, comments, and FB posts that encouraged me to get started again. I am honored to have discovered that Ciarra's story has been encouragement for many people. That makes it worth the time.

I will admit, part of my return to blogging is also this: "you never hear from the olderrrrr kids parents, because their lives are just awful, they are burdened, they arent little and cute anymore and they just stagnate."

Eh, bite me.

It is quite the OPPOSITE, actually. Ciarra's life doesn't revolve around Down syndrome. It lost its big BANG for us, and we just went about living our lives. Sorry to disappoint the haters, but..well, life is going JUST fine...if you count a boy-crazy teen with hormones, a penchant for VERY loud music, video games, junk food, and the quest for a bigger and better social life as "fine".

So, lets update where we are at 13, shall we?

Ciarra is BOY CRAZY. Like, seriously, totally, completely boy c.r.a.z.y. Theres this one little boy she is sure she is going to marry. He, on the other hand, is NOT so sure. But he is: polite, sweet, respectful, and kind. He doesnt mock her or take advantage of her by making her carry his books or do his homework, or anything he might have considered.

Chances are, Ciarra will NOT marry Devin. Chances are also pretty good *I* wouldnt marry MY first crush in school. It is not a tragedy. Its just life. She may get her little heart broken, and yes, it is a little harder to explain the fact that Devin just isnt likely to return her crush. I live in the real world. Devin does not have Down syndrome. Ciarra DOES. While he is a helluva nice kid, he is not terribly likely to fall madly wildly passionately in love with a girl with DS. But he can be her friend, and he is. And he treats her with dignity. Thats enough. For me, anyways. We are working on it with her. And yes, there is ALWAYS the possibility that some typically-chromosomed young man will love her back. (Have you ever seen the movie Mr. Blue Sky? wouldn't that be awesome, amazing, stunning, and totally cool? Living in real life doesnt necessarily mean we dont still have dreams. They're just different dreams.) But reality is, that isnt likely. Is that sad? Maybe a little.

Wouldnt it be nice if life could just be we get to choose the boy we love, and he would love us back, and we would always be exactly, totally everything he ever wanted? Yep. But life isnt like that. and we all...ALL OF US...DS or not...go through the ups and downs of love and heartache. Ciarra is no different. And so we see this as not a tragedy of her not being able to attain her one true love. We see it as a life lesson all of our children will have to learn. Love sucks sometimes. And someday, if you are lucky, you do find JUST that guy, the one you can share a life with and be happy. The one who loves YOU, 47 chromosomes and all. I see that in Ciarra's future.

Just not with Devin. ;)

7th grade has been very good so far. (Can you even believe it? that tiny little girl over there on my sidebar is actually THIRTEEN years old. A seventh grader. Shocking, even now.)

She is included in several classes, plus her "specials", such as Art, Guidance, Music, Keyboarding, and Gym. She had taken the last year and a half off of the regular gym program, and this year, with the success of a GOOD year, has decided to go back to the regular classes. I was very proud of her. It came as quite a surprise, but I think my little go-getter is back on the track of wanting to not take the easy road. I'm sure it is challenging for her. I'm sure it is challenging to her teachers too wink wink. But she is doing it. and I am really proud of her. I'm the mom who doesnt like the easy way out. We fight for Inclusion, and adjust when we need to. But just quitting because it is too hard weighs on me. Atta girl, C!

I minds well get the bragging out of the way.

Ciarra got a 92 average on her report card last semester.

She is THRIVING in Social Studies. LOVES it. They are doing the stock market game. I am told she is in First place. How? Well, she chose her favorite things to base her stocks on: pepsi, chocolate, apple (the Ipad she lives on) and mattel toys. Too funny.

I sometimes wonder what the typical kids parents think when they hear Ciarra is in first place? Is someone HELPING her, or what? LOL. Ciarra's classes are modified to some extent, fewer questions, bigger fonts, open book tests. she is nailing it.

Her teacher, who is amazing, said to me "She isnt just doing ok, Michelle. she is doing AWESOME!"

Honestly, education, inclusion, special education, modifications, all of those words we live with every day..sometimes it is these extra thoughtful kind words that we remember most. I think those words filled my cup more than any of the negative words can ever UN-fill.

Inclusion works! But it is a process that can drain you, beat you up, and leave you wishing for something better...and then leave you high as a kite at how well it CAN work.

Like getting a solo in the school Christmas concert. and singing your little heart out, not necessarily on key but beautifully nonetheless...with a standing ovation afterwards. 7th grade..the year we nearly panicked and quit this school...has been wonderful. Field trips to Mt Kathadin, school dances, laughing with friends....we are blessed.

About the negatives. Yes, there are some. Teaching her to not be too friendly with strangers, to understand the dangers that are out there, and to never allow herself to be a target by showing too much affection, too much skin, or too much openness is a trial. We WANT her to trust, to be open, to love people. But to be safe in a sometimes dangerous world is difficult. Some silliness has happened, such as showing off her new bra to her friend on the bus...omg...we have had to be very firm and very adamant about when and where it is ok to trust.

Also, Ciarra has gotten it into her head that she is a social butterfly, and I am her captain. EVERY day she asks me "Who's coming tomorrow?" Every day. Several times a day. She believes she HAS to be having playdates every day. Someone MUST be visiting, someone MUST be making plans with her. Or she gets lonely. She is downright spoiled in this regard. I dont know many typical kids who have friends over EVERY day. Being that mom that is so overly worried about her emotional health, I about kill myself trying to make it happen. Friends..constantly. Going to the movies, bowling, playdates at the house, bounce place, kids museum...go go go.

I am immensely grateful to have an in home support person who has been with us for years who has no problem going going going with her. 12 hours a week of help. I am SO grateful for it. Thank GOD for Emily! She is young, energetic, funny, and real. She loves Ciarra. They are like sisters, they fight, they argue, and they love one another. And emily, (thank you thank you thank you em), takes her out a couple times a week to help fill that constant need to be hanging with her peeps. I sometimes worry that Ciarra is lonely. The truth is, she has a better social life than *I* do, by far. Emily and I took matters into our own hands and started a playgroup type thing for teens with DS. At least one day a week, a few of them get together and go DO fun things. They work on social skills and speech, and they have fun. And it fills her never-ending need to be social.

As far as friends, she is very blessed in that she has several really good friends who we can count on to go to the movies with or just hang out at home with. A few of them are our friends kids..and there is always the question of if..and how soon..they might outgrow her. It is a reality that sometimes sucks. But yes, while Ciarra still is waiting patiently (NOT!) for Monsters Inc 2, some of her peers are more into "The Devil Inside". I am grateful for her innocense, but yes..it worries me. Thank God for several of her friends who have stuck around for the ride since they were tiny. Jade is one, you can see them in the fifth row from the bottom on the sidebar there. She and Ciarra's friendship is for a lifetime. They are funny together. Fight, make up, love, laugh..and make messes. Oh BOY, do they make messes. But we love her. and I love watching their friendship continue over the years.

I also hope that as those years pass, I will remember to keep blogging, keep recording her life story. Not just for her, or for me, but for all the parents who will come along and wonder what it is really like to be a teenager with Down syndrome. This is it. Real life, no whitewashing. The good and the bad.

PS: for those who asked about Jesse and Kristin?

Jesse is currently a Junior in high school, honors, driving now, still playing football. He has a girlfriend we adore (she is FABULOUS with Ciarra!) and a generally great kid. Mouthy, too big for his britches, but calls Mom to see if she wants a tea on his way home from practice...good kid.

Kristin is back in college, studying for a Business degree. She works with children with autism and loves it. She will be 24 this week. She is smart, determined, funny, and strong-willed. She is also immensely patient (thats new!) and as honest as the day is long.

The three of them are not a storybook kind of family. There are no rose-colored glasses here. They fight. Ciarra annoys them. They annoy her. No one treats anyone with kid gloves, they just are very real. she isnt breakable, and they arent, either. Siblings. Love and hate and slamming doors. But they love one another, and I adore them.

And Jim is Jim. Hunting, fishing, working. Loves his family, loves his dogs. Loves to hunt. Jim.

Another great contest!

2012-01-10T08:55:00.000-05:00

a Rafflecopter giveaway

2011-12-31T15:13:00.000-05:00

RIP dad. I know you loved me, even when life was horrible, and everything got in the way. I hope you are at peace now, with Gram and Gramp. Watch over my family, and please help me find peace myself.

Sisters

2011-12-28T18:40:00.001-05:00

sisters. <3

2011-12-28T18:38:00.000-05:00

Christmas 2011. Great friends. Family. Lots of laughter. Life is good.

Life lessons from a 13 yr old with Down syndrome:

2011-11-16T08:28:00.001-05:00

Ciarra, waiting at the bus stop, is dancing like a robot. She dips her head nearly to her knees, bends her elbows at sharp angles, pivots, throws in a few Michael Jacksonish moves. I am watching out the window. "Ciarra, are you a robot?" "Yep!" Hear vehicles coming up the road "Ciarra, people are going to think you are pretty silly" (WHY do I care? shes alive, vibrant, happy, uninhibited..do i REALLY want her to be more like ME? NOOO!!) "Its ok, Mom, Im just dancing. I dont even know their names." Meaning: Dont worry about it. I got this. What do *I* care what strangers think. Atta girl CB.

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2011-11-15T08:10:00.001-05:00

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13

2011-11-13T11:52:00.001-05:00

Ciarra is 13 now, in 7th grade. she loves boys, music, babies, and video games. she still LOVEs to read, and draw, and is loving the connection FaceBook brings. she is getting tall!

a GREAT prize-a GREAT reason to try

2011-11-06T13:54:00.002-05:00

My friend leah recently adopted a beautiful little boy named Axel, and she is off to go do it again! Much respect and love from Maine for this family. Please consider helping them fund this adoption, seeing how Axel has blossomed makes me very sure they are GREAT at this parenting stuff. Good luck Leah!

http://myianna.blogspot.com/2011/11/nikon-d3100-camera-giveaway.html

how can we just turn away?

2010-12-08T14:43:00.003-05:00

so many times, I have donated 5 or 10 or 20 dollars. And still the children keep coming. This isnt a bake sale, this is REAL life. Children being taken away to die. we CAN do something. Please do something.

http://babynumber10.blogspot.com/2010/12/most-important-post-i-have-ever-written.html

She is just like MY child. and just like yours, too.

2010-10-20T09:45:00.001-04:00

Photo and video editing at www.OneTrueMedia.com

I know the family in this video. I have spent time with Meredith and Mike Cornish, and watched them step out in faith time after time. Their children are treasured, remarkable, loved little people. The child they originally intended to adopt is currently in an institution in Ukraine. The survival rate of any child in an institution is... less than 2 years. Aleksa has survived more than that already, but time is running out. Aleksa has Down syndrome, just like Ciarra. she deserves to be held and loved, and tucked in at night. She deserves a family. There is something about this child that has held me from the first I knew her name. The Cornishes are SUPPOSED to bring her home. PLEASE, can you help me get her home? Just watch this video, and if you feel moved to, share it with your congregations. PLEASE help me help this family. PS you have my permission and my HOPE that you will share this video far and wide. Please please dont set it aside, time is passing quickly, there is only a little while left for them to raise the funds to get her out, they travel soon. If you could share this with your friendsm family, and churches, I would be so grateful. I am not an overly "religious" person, but something about this story makes me really believe that Gods hand is at work here. I just feel like Im supposed to write this letter, to do something to help. What is God asking YOU to do?

Photo and video editing at www.OneTrueMedia.com

12 yrs old...

2010-07-27T22:31:00.002-04:00

2010-07-24T10:22:00.003-04:00

Check em out!

Another little one on the way home. I just learned of their blog. Check em out!

tonight

2010-06-13T22:12:00.001-04:00

Ciarra was curled up next to me on the couch before bed. she reaches out to touch my cheek and tells me "I wish I had a piece of glue to stick me to you forever." It was so sweet. I told her that our love will have to be the glue. Mushy huh? I love mushy, especially from my kids.
Oh, and Jesse snuck up behind me just now at the computer and hugged me. ;)

this little girl...is almost 12.

2010-04-30T08:28:00.000-04:00

11

2010-02-21T13:23:00.001-05:00

A retard will do anything for a sticker.

2010-02-19T17:38:00.005-05:00

many years ago, there was a big hubbub on the net when a young man named Tucker Max hosted a blog he called "The Tard Blog". It was supposedly written by a special education teacher named Riti Sped. It chronicled her daily adventures with a classroom full of children with special needs. You have probably guessed that "The Tard Blog" wasn't especially kind to kids like mine. A group of us parents angrily challenged Tucker Max to shut it down. It took his using of the Special Olympics logo to finally make headway. He was forced to take the logo down, and in the meantime, apprently, "found God", or something close. The blog went on hiatus, Riti Sped stopped writing, and several of us spent months trying to find out just who she was, what district she taught in, and how worried ourselves sick over the abuse and degradation she showed daily on her blog. Pictures of children, intimate details of their lives. When it finally stopped, we sighed a sigh of relief. That was probably 8 or 9 years ago now. Back then, hearing the word "Retard" online was pretty common. we fought it where we saw it, where it was too blatant to ignore and too offensive to leave alone.
One of the things I remember most about the blog was the way Tucker and his friends mocked kids with Down syndrome. One of his favorite sayings was "a retard will do anything for a sticker." They laughed and joked about how they could humiliate and demean the children, as long as they patted them on the head and called them "buddy".

I feel a little like that this week. Fox's Family Guy did a show that involved the teen son going on a date with a young lady named Ellen, who happened to have Down syndrome. While it didn't seem to be of any concern to Chris, his baby brother Stewie was a bit taken aback. When Chris introduced them, he asked Stewie "Isnt she special?" To which Stewie replied "That's the way the state of Rhode Island would put it." After a few comments about her being "off", Stewie gave his blessing.

And all is well in the world.

Here's your sticker.

Yes, Family Guy actually showed a young teen with DS dating. In fact, it worked hard to dispel the myth that all people with Ds are loving and sweet. (Incidentally, have you met my daughter?) In fact, Ellen was portrayed as bossy, harsh, demanding, and rather rude. Cool. Parents across America grinned from ear to ear, "How great is that?!" they asked. "They didn't mock her, they didn't even portray her as special!"

No, but like the bully in high school who thumps you on the back and says "HEY, Buddy!!" as he slaps a "kick me" sign to your back, Family Guy pulled a fast one. Hidden beneath the feelgood are some not-so-subtle messages. As Stewie helps prepare Chris for his big night, he launches into song. Catchy, fast, and darkly amusing, it also is rife with hidden innuendo and blatant cruelty.

(Family Guy, Season 8, Episode 12: “Extra-Large Medium”)

You’ve got to look your best tonight, you tubby little parasite...
‘Cause there’s a lovely lady and she’s waiting for you.
And though her pretty face may seem
A special person’s wettest dream
Before you get to see it there are things you must do.

We’ll try a tie, and boutonniere of yellow.
A rose that shows that you’re a classy fellow.
With a posh panache of Jefferson at Monticello,
Busting out a mile with style.

I know you just can’t wait to stare
At all that luscious orange hair
But boy before you touch a single curl
You must impress that ultra boomin’,
All-consumin’, poorly groomin’
Down syndrome girl.

On any normal day you reek
As if you’re on a farting streak,
Your fingers up your nose and you are dripping with drool.
But if you want a lady’s love,
You’re better off by smelling of
A gentleman’s cologne instead of sneakers and stool.

A squirt, a spurt of something just for Ellen
And you’ll see that she will find you so compellin’.
And she does because the only smell that she’ll be smellin’
Won’t be comin’ from your bum.

You want to take that little whore
And spin her on the dancing floor
But boy, before you do a single twirl –
You must impress that effervescing,
Self-possessing, no-BS-ing
Down syndrome girl.

Her eyes are emerald portals to a secret land of love
And her smile is like the sweetest summer flower.
Her kiss is so inviting, and her hugs are so delighting.
And what makes them really nice is that they’ve got a little spice
Because they’re tighter than a vice and they go on for an hour.

My boy, between the two of us we’ll get you on that shorty bus.
And then you’re going to take it for a whirl.
Now go impress that super-thrilling,
Wish-fulfilling, Yoo-Hoo-spilling,
Ultra-swinging, boner-bringing,
Daily singing, ding-a-linging
Stupefying, fortifying,
As-of-Monday-shoelace-tying,
Stimulating, titillating,
Kitty-cat impersonating,
Mega-rocking, pillow talking,
Just a little crooked walking,
Poorly pouting, boobies sprouting,
For some reason always shouting,
Fascinating, captivating,
Happiness and joy creating

Down syndrome girl!

There it is. Here's your sticker, kid, now go away. I'm your friend, no really. You are really too dumb, after all, to get the joke. Besides, I told it fast, and I made it sound nice. And there was the fact that Chris dated you in the first place. After all, Down syndrome girls, despite their funny walks and too-tight hugs, and that...shouting...thing...are really quite nice.

Why, I even mentioned that you finally learned to tie your shoes. In High school. Sure, you got a date. But like the jock who invites you out and then doesnt show up while you are standing in your pretty dress looking out the window (and he and his buddies are all laughing it up over pizza), you are the joke. Because society is slowly learning not to laugh outwardly and point fingers, but being the mean little jerks they are, they have learned the art of subtlty. And you, my fellow parents, are simply too grateful for the opportunity to be seen as normal that you fail to see the hatred and vitriol and denigration aimed directly at you. Sadly, you are not the target, your child is. While you are celebrating this great foray into television wowness, stop to think about this for a second.

‘Cause there’s a lovely lady (insert your child's name here) and she’s waiting for you.

And though her pretty face may seem
A special person’s wettest dream
(insert your child's name here)
Before you get to see it there are things you must do.

But boy before you touch a single curl
You must impress that ultra boomin’,
All-consumin’, poorly groomin’(insert your child's name here. The one people sometimes stare at. The one whose lips are often split and sore, the one who sometimes acts funny, but you love her anyway)
Down syndrome girl. (And while you are at it, remember, the syndrome defines her. she isnt a "child with" anymore. she is little more than the title of the song. a Down syndrome girl. Nothing more.)

You want to take that little whore(insert your child's name here, the one you hope will one day find love. The one you wonder "will she marry?" The one for whom you would give the world to have children and a family and know true love)
And spin her on the dancing floor

(insert your child's name here) hugs are so delighting.
Because they’re tighter than a vice and they go on for an hour.

My boy, between the two of us we’ll get you on that shorty bus.
Just like (insert your child's name here. Doesn't your child ride the SHORT BUS?)
And then you’re going to take it for a whirl.
Now go impress that super-thrilling,
Wish-fulfilling, Yoo-Hoo-spilling,
Ultra-swinging, boner-bringing,
Daily singing, ding-a-linging
Stupefying, fortifying,
As-of-Monday-shoelace-tying,(you know the routine, insert your child's name here)
Stimulating, titillating,
Kitty-cat impersonating,
Mega-rocking, (Cause, you know, retards rock)pillow talking,
Just a little crooked walking,(insert your child's name here, you know, the one for whom walking was a goal worth waiting for. Who took her first wobbly steps while tears ran down your cheeks. Who struggles in PT and strains to run "normally")
Poorly pouting, boobies sprouting,
For some reason always shouting,(insert your child's name here)
Fascinating, captivating,
Happiness and joy creating (Oh, hell, go ahead. Insert your child's name here. We all know they really are all sweet and innocent.)

Down syndrome girl!

Stop to think about all the nasty little jokes you have heard.

Kids with DS are so strong, superhuman, even. (Do Retards Really Have Super Strength? it asks)

They drool. (This one features a post called "I hate…. retards and autistic children") It even features a nice photo. And hey, bonus, theres that super strength thing again! Do make sure you check out the last paragraph in this lovely post.

They spill their food.

They walk funny.

talk funny.

They cant tie their shoes.

They are loud, obnoxious, and if they get ahold of you, they might just hug you so hard they hurt you, because, well...they're stupid.

If someone said this about your child would you think it was funny? Regardless of politics, and who is trying to score points, is it even remotely funny? Not to me, it isnt. It is also not harmless. Read the comments section on one of the endless stories about this. People are not being touched and inspired by it. They are laughing at it, singing the catchy little jingle, which by the way has gone viral, and getting a big kick out of our willingness to see this as a positive. It is not a positive. That is my opinion. You are welcome to yours.

2010-02-17T09:25:00.001-05:00

Yeah. Thats exactly it.

Last night I gave Ozzie his breathing treatment. I placed a little purple breathing mask, which is adorably made to resemble a dinosaur's face, over his nose and mouth and turned on the machine that billows medicated fog into his lungs. I do this because Down syndrome has affected the anatomical structure of his airways and has weakened the muscles of his tongue and throat. He doesn't breath well, especially when he has a cold, and he has a cold right now. I thought about that as I held him. I thought about how unfair it is that he has to fight to breathe. And I'll admit, I started to get a little bit sad. But then I looked down at him, and instead of seeing my loving child, I saw him for what he really was - a wheezing retard in a dinosaur mask. Comedy gold. Can I get a rim shot?

Aislynn Turns Two at OneTrueMedia.com

2010-01-31T20:12:00.001-05:00

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2009-12-12T09:34:00.002-05:00

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we put in Cs IEP that she can present book reports etc on video, so she can do it in snippets and not be overwhelmed trying to remember words etc. she had to do a presentation about the Mona loa volcano in hawaii. she REALLY struggles with the word eruption and hawaii. Kinda funny. :) anyway, this is her presentation. she gathered the facts herself (she learned copy/paste WAY younger than I did) and she found her own pictures. She also had a huge part in mixing and building the volcano model, and she painted it alone. (5th grade) I know this is not what a typical 5th grader can do, but it is where she is, and I am happy with it.

2009-11-18T20:55:00.002-05:00

I am writing to ask for prayers and possibly donations to a baby girl born with DS 5 months ago near me. She has had TWO open heart surgeries in less than a month. One done in September failed and she is just recovering from her 2nd surgery Oct. 30th. Just got home from Portland hospital yesterday.

The baby is Abigail Grace, and she is so beautiful. Her mother has had to leave her job to be with baby, and dad has had to travel extensively to Portland. These are VERY young parents, not very financially prepared for a baby this sick. I am helping to organize a spaghetti supper in Orrington on Dec. 6th, to try to raise enough money to help these folks keep their home and get back on their feet from these multiple surgeries/trips.

We are selling tickets to the spaghetti supper. If you would like to purchase one, even if you cannot attend in person, we would be most grateful. Tickets are $6. The dinner is Dec. 5 at 5 pm in Orrington at the Ralph Pollard Masonic Lodge. There will be a silent auction at the dinner. If anyone could help in ANY way, it would be so sincerely appreciated.

Sincerely, Michelle (Mom of Ciarra age 11 with DS)

Animoto.com

2009-10-31T20:36:00.001-04:00

more conversations: best friends

2009-10-30T20:35:00.001-04:00

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the future looms

2009-10-27T14:44:00.003-04:00

I have never really been very afraid of the future. I'm not now, either, but suddenly it feels a little...near. I have been thinking about Ciarra being 11, and what the future might be for her that is different than what I have expected it to be. I wish we had a crystal ball to know what to expect. But we don't. I wish we could just allow time to open up like a flower, exposing every day a little more of whats to come. But we have so much to DO, so much to plan. so many concerns, worries, so much OPENNESS in the future. Parenting a child with special needs has not been the hardest thing I have ever done. It certainly isn't the easiest, either. But it truly requires more thought, love, and emotion (and planning!) than anything I have ever done before.

I met with Ciarra's teachers yesterday, a sort of gut check for me, is this working? is this the best thing? What can I do better, what have I missed? As we walk this tightrope of Inclusion and Special education, sometimes it feels like I am just about to fall off into nothingness and fly naked into darkness. I feel exposed, not in control, and sometimes, frankly, afraid. There is in every step a sense that I just might be making the wrong decision, ruining her chances for a good future, destroying something precious and vital of her childhood. I am, by nature, a worrier. What happens to her if I get this wrong?

For anyone still reading, some background. Ciarra is currently in 5th grade. She is funny, witty, stubborn, determined, and incredibly incredibly special in ways that have absolutely nothing to do with having Down syndrome. She is world wise and innocently naive all in one. She is brilliant, and yet has gaps in her ability that still today astound me. She loves to read, she loves words, people, animals, her family, and a very few people outside of our family. She is easily motivated, usually. And then all at once she is stubborn and taciturn, demanding and...well...hormonal. She makes me laugh and she makes me cry, sometimes all in the space of a minute.

I fear for her future, not because of anything in her, but because every once in awhile some idiot will remind me that the world is not a gentle loving place for the most gentle, loving people. Sometimes, it even sucks. I watched an episode of My Super Sweet 16 yesterday, the rich girl was handing out birthday invitations, and other kids stood there, waiting to be deemed "good enough" or "not". And I knew, in this world, Ciarra would never be one of the lucky ones who got handed an invitation by the shallow rich girl throwing lavish parties. Of course, I know I wouldn't want that for her, but still...

Preteens with Down syndrome are a lot like typical kids. They want certain clothes, listen to the "cool" music (with a little bit of barney and doodlebops on the ipod for good measure) and they crave friendships. Ciarra is lucky to have a few very good friends. And one friend that we had had to distance her from a year ago has reached back out, with new rules and a new awareness and some maturity, it seems to be going well. But the girl who always made Ciarra a part of things at school moved away over the summer. Her absence has had an awful effect, without her there to encourage Ciarra to join in, be a part of things, without her friendship, Ciarra is choosing to sit away from that gang of girls. Without the buffer Jenna gave her, she seems a little bit lost. Besides, the other girls are talking about things she isn't into yet, that emotional maturity is just not there. She knows they talk about boys and makeup and parties. And she still wants to talk about puppies and kittens and Hannah Montana.

I feel like, in some weird way, I am letting people down by telling this story, like somehow because so many things have been relatively easy for Ciarra that this should be, too. But it isn't. Not always. She is SO blessed to have some really good friends at school and at home. But it is changing now, the kids are maybe leaving her behind a little bit. (I can almost hear "I told ya so" from the chorus of haters that almost will our kids to suffer, the people who want to see DS take the same toll on my kid it took on the ones they chose not to deliver at all.) And while Ciarra's life is changing, it certainly is not a bad life, or an unhappy one. But the realities of being a preteen with a significant disability in a world that only tolerates perfect are there.

I have to wonder, who really has the disability here? Ciarra doesn't judge, she doesn't hate, she is rarely angry. But what she is is different. Her world is so full, and she has so much. But as she grows, as she begins to make her way in a world less inclined to be accepting and tolerant, without me there to guide her, she gets hurt. ALL kids do, she is certainly not the only 5th grader to not get the coveted Birthday party invitation. Its just that she feels it so keenly, and I cant help but think it is because of the DS that she isn't being invited, I cant make that better, or promise she will outgrow it like I could if it was knobby knees or zits. Ds is a part of her, a part I treasure, but with all of its beauty comes a certain sadness, because the world is simply not as accepting of people who are different. And I have to wonder if this isn't the beginning of the end for this emotionally stable, healthy, confident little girl. Will she stay strong and continue to believe in herself? will she think Ds is no big deal, or will she wish with all of her heart to change it? Down syndrome is not something I would ever change for me. But for her, if she wanted to change it, would I ever have the right to stand in her way?

I have been asked many times since she was born, would you change it if you could? No, I wouldn't. But I will have to fight like hell to make her not wish she could, and make her comfortable with who she is, knowing that who she is is beautiful, funny, smart, gregarious...and sitting home on Saturday while most of her peers attend a Birthday party she wishes she too could attend. My other kids survived it, and I was sad for them, too. But with Ciarra, there is always the "might have beens" and sometimes those hurt even worse.

2009-10-18T11:55:00.000-04:00

To Select a Bauble For Your Blog
CLICK HERE

It is already nearly time for the 2009 Christmas Angel Tree Project! We have nearly (200) children with Down syndrome in need of sponsors and adoptive families in (25) countries around the world. (172) of them already have their own Christmas Warrior, folks who have signed up to provide focused efforts to raise $1000 or more for their Christmas child's adoption grant fund.

For those of you who are new to RR, when you donate $35 or more for one child's grant fund, you will receive a beautiful porcelain photo ornament of your sponsored child to hang on your Christmas tree! These also make very personal and meaningful GIFTS for people you know who are advocates of children with Down syndrome or adoption in general. Nobody wants more scented hand lotion! GIVE THE GIFT OF A FAMILY this Christmas instead.

The Sponsorship Page goes live on November 1. The project runs until December 31. But NOW is the time to prepare, sign up to be a Christmas Warrior, and help 2009 be our most successful Angel Tree EVER! All donations are tax deductible.

God bless each of you, we are so excited for this time of year and grateful for each of you sharing this ministry and this special project with everyone you know! Post about it on your blogs, your FB, your Twitter, your MySpace!

Andrea Faris Roberts
Executive Director, Reece's Rainbow

We have a WINNER!

2009-10-03T20:42:00.002-04:00

we have a winner!!! Mr. Grifyn Bedford and his brother Xander won the software package. Be watching for the next giveaway, which will be drawn from all entries. Congrats Grifyn!

Make an on-line slideshow at www.OneTrueMedia.com

imagine, reading sight words already? Not too long ago, this little guy was in an orphanage, and had never heard english in his life. Amazing.

An unannounced REBLOGGING giveaway for 31 for 21

2009-10-03T20:09:00.005-04:00

I have not been blogging lately, Facebook has become so easy that I rarely blog anymore. Tonight, that changes. As a part of 31 for 21, I will begin REBLOGGING. And in order to make up for my missed first days, I will be doing a giveaway!

The above prizes will be given away over 3 days. Tonight, to start the giveaway, we will give away the 2 Laureate programs pictured above! Be watching for the other prizes, including a copy of Play To Talk by Dr. Jim McDonald.

To the FIRST person to respond, who links me back to a blog post about their child with Down syndrome and the ways they learn academics, will go a TERRIFIC prize package!

You will receive a brand spanking new copy of Laureate's Nouns and Sounds software Value $125

PLUS! a copy of PREPOSITIONS, also by Laureate. value $210

these 2 programs are values at $335 dollars, but they are PRICELESS! Laureate puts out some incredible programs. They have been kind enough to allow me to donate these 2 programs to a lucky winner.

Ready? Set? Let's see who is still reading?!

new pics

2009-09-19T22:30:00.001-04:00

Make an on-line slide show at www.OneTrueMedia.com

summer is coming to an end

2009-08-16T22:45:00.005-04:00

this has been an enjoyable weekend of ME time, no schedules, no huge plans. some groceries, some laundry, a small project to help me get organized.The kids had a mellow weekend too, I almost feel like we are in cocoon mode right now, plotting against the school days that will come a week from this wed. Ciarra starts 5th grade, Jesse starts High School, and kristin goes to college. Time rushes by, and for this moment, I just want to hold onto all of us and the easy days and keep them close.
alas, life needs me to make some decisions and get ready. I created a bulletin board project for our entryway, something useful and semi decent to look at. Im no artist, to be sure, but I wanted something nicer than your average cork board.

basically, this is a corkboard covered with fabric, divided into sections for Jesse and Ciarra (Kristin keeps track on her own) and for the family in general. It makes it that much easier to remember school papers, sports schedules, Dr appointments, etc. I need to get a communication folder going, and update Ciarra's notebook with most recent IEP, etc. and i really need to clean out my office bins for this years homework and stuff.

C's teacher has been in touch, she seems wonderful. she asked me about adapting some stuff, and has some great ideas of her own. We will meet this week to go over anything we can think of to make this year easier. One of Ciarras best friends moved this summer, and she was sort of the buttress that brought C into the group at lunchtime, I wonder how that will go now that jenna is gone. she was a true gift to Ciarra socially, including her in everything. I worry.

Jim and I are doing well, he has been very loving and sweet the last few months, we made a commitment to one another to be a couple and not just parents. We actually had a date night the other night, a movie, it was nice.

what I would never change-and what I feared

2009-08-15T09:15:00.001-04:00

how could I have ever feared a life with a child who would bring so much joy?

irreversibly prevented from being or becoming participating citizens

2009-08-10T23:05:00.001-04:00

http://www.nypost.com/seven/07242009/postopinion/opedcolumnists/deadly_doctors_180941.htm?&page=1

this article talks about the elderly and disabled and health care, and quotes Dr. Ezekiel Emanuel, the brother of White House Chief of Staff Rahm Emanuel. He has two key positions: health-policy adviser at the Office of Management and Budget and a member of Federal Council on Comparative Effectiveness Research.

the article quotes him directly as follows:

Hastings Center Report, Nov.-Dec. '96

http://ncpa.org/pdfs/Where_Civic_Republicanism_and_Deliberative_Democracy_Meet.pdf

Ezekiel J. Emanuel

"This civic republican or deliberative democratic conception of the good provides both procedural and substantive insights for developing a just allocation of health care resources. Procedurally, it suggests the need for public forums to deliberate about which health services should be considered basic and should be socially guaranteed. Substantively, it suggests services that promote the continuation of the polity those that ensure healthy future generations, ensure development of practical reasoning skills, and ensure full and active participation by citi- zens in public deliberations-are to be socially guaranteed as basic. Conversely, services provided to individuals who are irreversibly prevented from being or becoming participating citizens are not basic and should not be guaranteed. An obvious example is not guaranteeing health services to patients with de-mentia."

The fundamental challenge to theories of distributive justice for health care is to develop a prin- cipled mechanism for defining what fragment of the vast universe of technically available, effective medi- cal care services is basic and will be guaranteed socially and what services are discretionary and will not be guaranteed socially. Such an approach accepts a two-tiered health system-some citizens will receive only basic services while others will receive both basic and some discretionary health services Within the discretionary tier, some citizens will re- ceive few discretionary services, other richer citizens will receive almost all available services, creating a multiple-tiered system

"The patient, or micro, level entails determining which individual patients will re- ceive specific medical services; that is, whether Mrs. White should receive this available liver for trans- plantation"

Obamacare scares the heck out of me, and it should ANY parent of a child with a disability, and especially those of us raising children with an extremely high rate of dementia as they age. This is not an email fwd, this is not someone elses words. This is me, fearing for our kids.

mini minister girl

2009-07-14T15:56:00.002-04:00

2 Corinthians 12:9-10
But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

Had 2 funerals this past weekend, my Uncle Russell's and my aunt Dot's. It was amazing to see cosuins and aunts I hadnt seen in many years. My aunt's son Michael is a big, strapping man now. I havent seen him since he was a teen. He had made a box to hold his moms ashes, and it was resting at the gravesite after the ceremony. He was standing there, lost in thought, just quietly saying goodbye I guess. Suddenly, Ciarra tugged her hand out of mine, and I turned to see her standing beside Michael. she looked up at him, very quietly said "are you sad?" and then put her teeny little hand in his huge one and started to pray. It was otherwordly.

She said a very few words, and I dont know exactly what she said because she whispered, but it was "Dear God and Jesus" something. Then she turned to this 6 foot plus many man and said as clear as a bell "I can give you a hug to make you feel better. Dont be sad, your Mom is with God and Jesus now." She hugged him very close, and then turned and left him there, he looked at me in sort of shcok, like "what the HECK?!" with a huge smile on his face and tears in his eyes. It was a very strange, powerful encounter.

What's most odd about it is that I wasnt shocked by it. She has done things like this a few times, she has this odd THING about her that just seems so self confidant and strong in cases of death. She is POWERFUL, like this little mini minister person. I am in awe of her ability to comfort people.

To me, it is a very overpowering feeling of kindness, love, goodness. I feel honored to have it near me, but it is so clearly NOT mine, not guided or taught by me, it just IS.

Matthew 11:25-30
Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light
.

July is here

2009-07-08T18:09:00.002-04:00

I heard on the news this morning that we have not had 2 days of sunshine back to back since APRIL 15th!!! At the end of June, they said we had had rain for 28 of 30 days. It is now July 8th, and we have had ONE day without rain since then. Sigh. Todays high is 54. No pool, no AC needed yet. Just blah. But...life goes on.

My Mom and stepdad are here from Florida for my Uncle Russell's funeral. We leave to drive up North for that tomorrow. It will be hard to say godbye to him, I loved him so much. My aunt Dot died 6 days after he did, we will bury them beside one another in the family plot. I will be seeing relatives I havent seen in 30 years. Kinda exciting, kinda scary.

Things that have happened in the last month.

-we went out to eat at weathervane and Vern tried to pay the bill. he and Jim chased one another around the restaurant (really) for 15 minutes. Jim won.
-Jesse seems to have a girl. she is gorgeous. I found myself having the "talk" with him as we drove him to her house last week. Yikes. He doesnt completely admit shes his girl, but she texts him constantly, shes been here and he at her house. I am old, but it hasnt been THAT long.
-Kristin has decided to go back to college. Financial Aid, anyone?
-Ciarra turned 11. we had her party at her summer camp. she had a great time, and so did we.
-Ciarra learned to kayak, and is pretty darn good at it.
-My darling Sarah got married, and I took her wedding pics. Beautiful bride, the apple of my eye too.
-Rob and Wendy and Hunter came for a visit! It was wonderful seeing them, but heartbreaking taking them to the airport afterwards. Home is here, in maine. I hope they can get home soon.
-Someone very special to us did something very unlike him last fall. He was defending his child, but he made a terrible decision. he went to prison recently. we miss him more every single day. He will not be out until 2012.
-We finally sold my Grandparents old house. The closing is tomorrow. yay. Finally done payingfor that thing!
=we went camping in the Rangeley mountains. I finished a long hike to a waterfall, but it was TOUGH.
-I am working on this extra weight of mine, God give me the strength to make the right choices.

My Kayak girl

2009-06-30T22:11:00.004-04:00

Kristin, myself and a friend went to pick Ciarra up from camp today. When we arrived, the lifeguard, a very nice lady named Janet, told me she wishes she had had a video camera today. I said why, she told me that Ciarra had decided she was going to Kayak today...all be herself, out of the blue. And she did. Janet allowed Ciarra to hop back in one and show me her stuff. Wow! The kid LOVES kayaking, and shes pretty good at it too! Not sure I could make it go so well with only an hours practice! Once again, Ciarra surprises me.

Make photo slide shows at www.OneTrueMedia.com

The song used on this post is called The Climb by Miley Cyrus. When I hear it, it reminds me of this little girl of mine, and her constant attempts to break the mold and challenge herself. she is not a quitter, she is a go-getter and a powerhouse of a human being. The song is right, it just isnt about "getting there" it is all about the climb, the battle of wills that makes a human being who could easily give up and stop trying so hard to meet every challenge keep going, even when it is hard. When I think about Ciarra's life, I realize that in her shoes, I might want to take the easy way out, to let my disability be an excuse to just sit back and let the world come to me. Not this kid. she is constantly challenging herself, always striving a little harder, always ready to try anything at least once. It is hard to imagine a little tiny girl being my hero, but she is. she reminds me every single day that living the life God has given us to live is all that matters, that this is not a race, and that there are a million ways to prove who you are without ever opening your mouth to say a word. Its the climb, baby. :)

I can almost see it
That dream I'm dreaming
But there's a voice inside my head saying
"You'll never reach it"

Every step I'm taking
Every move I make feels
Lost with no direction
My faith is shaking

But I gotta keep trying
Gotta keep my head held high

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb

The struggles I'm facing
The chances I'm taking
Sometimes might knock me down
But no, I'm not breaking

I may not know it
But these are the moments that
I'm gonna remember most, yeah
Just gotta keep going

And I, I got to be strong
Just keep pushing on

'Cause there's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be an uphill battle
Somebody's gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!

Keep on moving, keep climbing
Keep the faith, baby
It's all about, it's all about the climb
Keep the faith, keep your faith, whoa

2009-06-29T09:37:00.001-04:00

11

2009-06-27T06:58:00.004-04:00

It seems impossible that today my little girl is eleven years old. We are more than halfway to adulthood, we are no longer trying to figure out where we are headed, we just keep putting one foot in front of the other and doing it. Eleven years have zoomed by, it seems like only yesterday I was hearing myself say "What are the chances this baby has Down syndrome?" only a blink of an eye since I challenged a doctor who seemed to be questioning why I hadn't "done something about this?" (meaning abort her) and wasn't it just 2 seconds ago that I was snapping the photo of her in the red coat on the steps of the preschool?

In my minds eye, I see a million memories, first steps on a dirt road at a DS conference; the first time I held her in my arms and heard Karen Gaffney speak, promising Ciarra she, too, would have that love and support; tiny pink headbands on a mop of dark hair; the tear duct that refused to open for so long, leaving one beautiful pirate-eyed baby girl squinting up at me; the first of many times medical professionals would look at me in wonder and ask "she sure is doing well, for having Down syndrome." The realization that it wasn't Ciarra they were surprised about, it was their own preconceptions. I remember the early friendships, some of whom remain strong to this day. Girl Parties, precious little ones dressed in their Sunday best to celebrate life with Ciarra. I remember revelling in the early words-"SHE CAN TALK!" Finding big brother snuggled up with her in her crib, one arm protectively across her shoulders. I remember her first drawings, the time she spelled Mom on a little sliver of paper I still have somewhere. I remember the sparkle in her eyes the first time she tied her shoes...at three. I remember days at the Cardiologists office, hearing the magic words "she is discharged". I remember tonsils and adenoids, and the struggle to wake up from anaesthesia.

I remember a hundred parents just ahead of me on the path, reassuring me about: atlanto axial instability (she didn't, but the testing was a nightmare); late teeth; first words; what leukemia looked like...was it possible? I remember her infancy and toddlerhood through a thousand photographs, documenting a life less ordinary, but so incredibly precious. I remember the terrible words of the terminating mothers, that "she is cute now, but you will regret it when she is older and the cute is gone." I remember finding out in detail what happened to over 90% of her prenatally diagnosed peers, and feeling completely ineffective and useless...except for the red coat picture...which seemed to be a living thing to so many people making the decision.

I remember the first day her tiny legs tried to climb the bus steps, and she turned and waved, my heart outside my body, little big girl off into the world. I couldn't protect her, shield her, anymore. I remember knowing she would be ok, when I saw her amongst her friends, smiling, one of the crowd. I remember tball, and basketball, when we tied a ribbon to the hoop to give her a visual reminder of which net was ours. I remember a million kindnesses, people who could have walked by that chose to stop and extend the hand of friendship instead, to celebrate every accomplishment with her. I remember the stands erupting when she got her first big hit in baseball. I remember the faces of her teammates, as they lined up outside the dugout to give her five, unscripted, as my video camera rolled while I tried not to cry from the beauty of it all.

I remember the struggle to make school work for her, the decisions, the battles, the victories. I remember walking into the lunchroom and thinking she might be sitting with the special needs kids at the table in the corner, then hearing laughter from a group of some of the most popular girls, who were laughing at something Ciarra said...not in a mean way, they were letting her tell a story, listening intently, reacting with love and support. I remember feeling like our lives are written in tiny sound bites of memories like these, and that building enough of them to fortify her for an uncertain future was important. I remember thinking that maybe it is time to stop worrying about the future so much, it seems obvious that today is the future we worried about, and she is doing fine.

I remember the phone call from my oldest, telling me that Ciarra "was a woman now" and being so grateful that she had been there, to make it cool, to not panic, to take it all in stride and help Ciarra see it as a good thing. I remember her dancing on the beach with her imaginary prince, twirling in the sunset, taking my breath away with her innocence.

I remember who I used to be, and how far I have come. I remember the days when "different" was anathema, when a child with disabilities scared me. I remember to be gentle with that me, because there are a thousand just like her all around us in the world who need gentle understanding and guidance as they learn about MY child.

Mostly, I remember to tuck every memory away, good and bad, somewhere in my mind. To look back when we look forward, to always remember that every single day will impact who she is and what becomes of her. I am not afraid anymore. DS is a part of who Ciarra is, but it has never defined her. She defines herself, and she will be who God intended her to be. Whoever that is is more than fine with me. Happy Birthday, big girl, I cant wait to see what the next 11 will bring.

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a VERY important SCOTUS decision-IDEA law

2009-06-23T11:29:00.001-04:00

http://www.asmainegoes.com/content/scotus-public-must-pay-private-special-ed-0

After a private specialist diagnosed respondent with learning disabili-ties, his parents unilaterally removed him from petitioner publicschool district (School District), enrolled him in a private academy,and requested an administrative hearing on his eligibility for special-education services under the Individuals with Disabilities Education Act (IDEA), 20 U. S. C. §1400 et seq. The School District found re-spondent ineligible for such services and declined to offer him an in-dividualized education program (IEP). Concluding that the School District had failed to provide respondent a “free appropriate publiceducation” as required by IDEA, §1412(a)(1)(A), and that respon-dent’s private-school placement was appropriate, the hearing officerordered the School District to reimburse his parents for his private-school tuition. The District Court set aside the award, holding thatthe IDEA Amendments of 1997 (Amendments) categorically bar re-imbursement unless a child has “previously received special educa-tion or related services under the [school’s] authority.”§1412(a)(10)(C)(ii). Reversing, the Ninth Circuit concluded that theAmendments did not diminish the authority of courts to grant reim-bursement as “appropriate” relief pursuant to §1415(i)(2)(C)(iii). See School Comm. of Burlington v. Department of Ed. of Mass., 471 U. S. 359, 370.

Held: IDEA authorizes reimbursement for private special-education services when a public school fails to provide a FAPE and the private-school placement is appropriate, regardless of whether the child pre-viously received special-education services through the public school.Pp. 6–17.
(a) This Court held in Burlington and Florence County School Dist. Four v. Carter, 510 U. S. 7, that §1415(i)(2)(C)(iii) authorizes courts
2 FOREST GROVE SCHOOL DIST. v. T. A.
Syllabus
to reimburse parents for the cost of private-school tuition when a school district fails to provide a child a FAPE and the private-schoolplacement is appropriate. That Burlington and Carter involved the deficiency of a proposed IEP does not distinguish this case, nor does the fact that the children in Burlington and Carter had previously re-ceived special-education services; the Court’s decision in those cases depended on the Act’s language and purpose rather than the particu-lar facts involved. Thus, the reasoning of Burlington and Carter ap-plies unless the 1997 Amendments require a different result. Pp. 6–
8.
(b) The 1997 Amendments do not impose a categorical bar to reim-bursement. The Amendments made no change to the central purpose of IDEA or the text of §1415(i)(2)(C)(iii). Because Congress is pre-sumed to be aware of, and to adopt, a judicial interpretation of a statute when it reenacts that law without change, Lorillard v. Pons, 434 U. S. 575, 580, this Court will continue to read §1415(i)(2)(C)(iii)to authorize reimbursement absent a clear indication that Congressintended to repeal the provision or abrogate Burlington and Carter. The School District’s argument that §1412(a)(10)(C)(ii) limits reim-bursement to children who have previously received public special-education services is unpersuasive for several reasons: It is not sup-ported by IDEA’s text, as the 1997 Amendments do not expresslyprohibit reimbursement in this case and the School District offers noevidence that Congress intended to supersede Burlington and Carter; it is at odds with IDEA’s remedial purpose of “ensur[ing] that allchildren with disabilities have available to them a [FAPE] that em-phasizes special education . . . designed to meet their unique needs,” §1400(d)(1)(A); and it would produce a rule bordering on the irra-tional by providing a remedy when a school offers a child inadequatespecial-education services but leaving parents remediless when the school unreasonably denies access to such services altogether. Pp. 8–
15.
(c) The School District’s argument that any conditions on accepting IDEA funds must be stated unambiguously is clearly satisfied here, as States have been on notice at least since Burlington that IDEA au-thorizes courts to order reimbursement. The School District’s claims that respondent’s reading will impose a heavy financial burden on public schools and encourage parents to enroll their children in pri-vate school without first trying to cooperate with public-school au-thorities are also unpersuasive in light of the restrictions on reim-bursement awards identified in Burlington and the fact that parentsunilaterally change their child’s placement at their own financial risk. See, e.g., Carter, 510 U. S., at 15. Pp. 15–16.
523 F. 3d 1078, affirmed.

off to summer camp again

2009-06-22T12:20:00.004-04:00

things I dont ever want to forget:

singing to the Ipod in the car, and her stopping to look at me and tell me that "Hannah Montana is my FAVORITE pop star. Delighting in the words, and in this delicious little girl who wields them with a sparkle in her eye and a huge smile.

Seeing her RUN off the bus and into the arms of the Director, who greeted her with a hug and remembered her name.

Watching her sit with 2 little friends who also have DS, she has known forever, in beanbags at the front as the co-Director welcomes them back. When she asks what things the kids are most excited to do, Ciarra begs to sing "Going on a Lion Hunt" and the place lights up...."I remember that song!!!" from a hundred little voices.

Then watching her stand up and sing her own favorite song, the Spongebob theme song, perfectly right, exactly on key, not missing a word. and smiling as she wiggles her hips and points 2 fingers at her rapt audience as she calls out "Are you ready, kids...who lives in a pineapple under the sea" and watching them all shout back the words "Spongebob Squarepants!"

It is as if summer began for real today, in a light rain, on the shores of a beautiful lake, surrounded by friends. Summer camp is the most joyous thing for a kid, and my girl is no exception.

Oh no. You hurt my feelings.

2009-06-17T09:02:00.002-04:00

Geez. What the hell is it with people? Someone wasn't winning an argument real well, no substantive responses, etc. So they apparently thought they would get the BIG jab in, go for the jugular...is that the BEST you can do? I laugh in your...um...well, whatever.
Let me explain something. The world would probably be a lot better place if we were all "a little bit retarded". Maybe we wouldnt have so many wars, we wouldnt care about the labels on our clothes. We wouldnt let anyone go hungry or homeless. We would be much more likely to stop and smell the roses along the way and not be rushing hither and yon trying to GET MORE STUFF. Certainly, we would not be aborting babies and using them as the butt of our jokes...we would revere life, from a butterfly to a wooly mammoth. We wouldnt even dare to think nasty thoughts or be cruel to one another.
We would be much more simple in our thoughts, good and bad would not ever look the same to us. We would dance when the spirit moved us, laugh freely without embarrassment. Being mentally retarded would make us a little less conscious of each others faults. We would love unconditionally, even our enemies. We would know kindness and eloquence and dignity, and no one could ever take that away, either by posting supposed "jokes" about our intelligence or about our worth in the world as a human being.
I guess your silly little post was meant to hurt me, to embarrass me. But it has the opposite effect, you see? I am stronger for having my child in my life. Even a "defective, retarded" child...ANY child....teaches us to be kinder, better people. You should maybe consider that, when you are done being stupid and childish and petty yourself. When you can see past your own value and find it in another person. I wont hold my breath. ;)

PS: I like this version better.

Posted by Michelle at 10:38 AM

love this!

2009-06-13T19:11:00.000-04:00

the CUTEST boutique-y clothes this lady makes

2009-06-06T10:50:00.002-04:00

was looking through my old saved blogs from last year, catching up on who has brought their little ones home etc when I RE-discovered this adorable blog. O!M!G! The CLOTHES this lady makes!! I wish C was littler and I could get away with it....I just love her stuff. And even better, it all goes towards bringing her future daughter home. seriously, if you have a little girl, go LOOK! I dont know much more about them except I love the clothes, and they seem absolutely adorable as a family.

Conversation Partners- Communicating Partners

2009-06-05T08:10:00.003-04:00

Welcome to Summer,

Since you and your child may be spending time with some new people or
family this summer, you will have the chance to invite them to help
your child interact and communicate more. The hopefully more relaxed
times of summer often help children make real gains in socializing.

As your child meets more and more people, you can help him a great
deal by coaching family and friends in ways that help him socialize
and communicate. The more people he interacts with the more he will
learn and the and less alone he will be.
Anyone who knows your child can help.

You might begin with a few suggestions, such as

Say one thing them wait for him or
Make the sounds he makes. or
Talk about what he is doing or
Question less and comment more or
You dont have to talk, playing quiet will help him.
He does best when you act like him. And
She can do a lot more than you may expect.

Show and discuss this with anyone spending much time with your child
family, sitters, teachers, and aides. Keep this list in your purse or
wallet so you get in the habit of changing your childs world in his
favor. Be proud of your child and find new friends for him or her.

Let us know how it works.

Dr. Jim

HOW YOU CAN HELP MY CHILD DEVELOP.

When a child is delayed or not socially outgoing, he or she needs
people to interact in different ways than is typical. When a child has
autism pdd, aspergers, Down syndrome, cerebral palsy or other
conditions effecting communication, they have special needs of their
life partners if they are to learn and build relationships with
them. Think of the guides below similar to ones you would give to
people if you had a child with diabetes, heart problems, allergies,
special fears, or different learning styles. For example, for a
diabetic child, you would let everyone know how to and how not to feed
and treat them. Similarly with late talking children we need to
let their life partners know how to interact so the child will show
his best and so they will truly see what the child can really do.

HELLO! You can really help my child develop. You do not need
training; you just need to be his partner. The more real friends he
has now, the more he will learn and fit in the world.

Thanks for connecting and helping my child grow.

_______ Family.

My child can do more than you think!
My child will learn, communicate and care about you more when you
do some of the following:

Interact WITH not AT my child.
Enter physically in his world and observe him silently for a short
while.
Become aware of his interests and ability level.
Then, gently join into his activity without disrupting it.
Do what the child is doing.
Do not do a lot more than he is doing- but be active.
Match his movements; act in ways he can try to do.
Respond to his movements with similar, related movements.
Talk about the here and now, about the childs experiences.
Be animated: be more interesting than what is distracting him.
Do more of what you do when he stays with you
Do less of what you do when he leaves you.
Match his speech: talk in ways he can now talk (this will help him
talk more.)
Respond to his speech: show him you are interested.
Wait silently for him to take his turn
Dont just praise him: enjoy him instead; your response is the best
reward.
Take turns with action and talk: be sure to give and take.
If you dont understand him, treat it as a foreign language and simply
give him an English word that fits the situation.
Limit your questions and demands: comment instead.

Bottom line: the more you enjoy each other, the more my child will
learn with you.

PS: ALL OF THIS WILL HELP YOUR CHILD
BE MORE SOCIAL AND COMMUNICATIVE AND LEARN MORE.

COMMON PROBLEM:--TOO MUCH TALKING

PARTNER TALKS SO MUCH

THE CHILD GETS TOO LITTLE PRACTICE.

Why is this a problem?:
Not enough practice for a conversation habit.
Learns to be passive.
Learns to talk about others ideas.
Fails to learn turn-taking.
Believes his ideas are not important.
Partner usually gives talking models that are too complicated.
Conversation are short lived when one person runs the show.
CONVERSATION LEADS TO A SOCIAL LIFE MORE THAN LANGUAGE ITSELF.

What can you do to help?

THINK OF CONVERSATION AS A GIVE AND TAKE, A PING-PONG
GAME NOT A LECTURE OR A TEST.
Wait silently for partner to have his turn.
Clearly expect and anticipate him to participate.
Allow his turn at times to be physical and nonverbal.
Accept and respond to a turn even if it is unclear.
Let person know that you want the conversation to continue.
Remind your self that he will learn more when you do only half.
Your child learns language best in conversations.
Make conversation out of physical interactions.

EXAMPLE:
LESS LIKE THIS

MOM: Your birthday's coming. What do you think you will get? I bet
Grandma will get you clothes again. Who will get you toys? What toys
do you want?
Child: Computer games. The ones that...
M: Interrupting. Oh not more of those. you just hide away and get
stuck on those.
C: You can play with me on the computer.
M: Oh you know I am always busy. And I don't understand what you see
in them.
C: You could learn.
M: Oh I have too much to do.

EXAMPLE
MORE LIKE THIS:

MOM: Birthday's coming. Waits looking at child.
Child: I want a train cake. With an engine and a caboose.
M: Any tender cars?
C: Yes one for pigs and horses.
M: They might fight together.
C: Okay, lets have two tender cars.
M: Good idea

CONVERSATIONS DEVELOP BEST WHEN BOTH PARTNERS PARTICIPATE AS MUCH AS
THE OTHER. THE CHILD LEARNS MORE LANGUAGE TOO..

For more see http://www.jamesdmacdonald.org/

the greatest fan of your life

2009-06-02T16:54:00.003-04:00

Ciarra is currently in 4th grade, and doing very well. She is spending a few hrs a day now in the Resource Room, which so far seems a really good fit. She is excited to be having a birthday coming up, and some school friends have already asked if they can come.

So far, friendships are still going strong for Ciarra. She has a few very good friends, one best friend (Julianna) and "school friends". She continues to be very lucky in this regard, at lunchtime for instance, she rarely sits alone, and has a group of very nice girls that seem to genuinely enjoy her company. Not sure she notices, but Mom sure does, these are some of the most popular girls. (yay!)
I think that some changes we made this year in terms of friends have been very positive for her, it was very difficult to draw lines between she and her former best friend, but it has been a very good decision. Thankfully, Julianna jumped right in. She lives next door and they truly love one another, she spends a lot of time here, they play on the same baseball team, etc. I imagine the summer will be full of mud pies and picnic lunches. It is sweet to see them every morning waiting for the bus, they always hug one another like it has been years. sweet sweet moments to treasure.

Ciarra plays catcher again this year in baseball, and LOVES it. she seems to be getting better and better at hitting, too. Being on the team is so good for her, she learns so much about working together. Not sure what next y will bring, she will have to move up to softball for bigger girls, we will play it by ear, as always.
Ciarra LOVES monster movies! Monster House, Coraline, Monsters Inc. She wants a Coraline birthday party, and wants to be Boo from Monsters Inc next Halloween. She is a funny kid. Her speech is just rolling along, most people understand most of what she says now, and she makes a point of making sure they do. She is funny, gregarious, and also a bit moody, which must be from being a girl and hitting puberty. :)

Healthwise, things are going very well. We have found a wonderful ENT who is really aggressive in searching for answers to this ongoing issue she has. we really like him. She has been much healthier this year, fewer ear infections, sleeping well, and growing like a WEED! She is in a size 12 now, about 76 pounds, and tall and strong. she used to be such a wisp, now she is solid like a rock. Very little chub, just SOLID. She has begun to run much faster (baseball!) and talks a lot about healthy foods, although she still likes her Pepsi and chocolate. ;)

We recently went camping with friends, and she had a blast. She and I worked to start the campfire, and I really let her do it. She gathered twigs, newspaper, and firewood, and I lit a small branch so she could get the fire going. She did it so proudly. She husked corn, helped set up chairs around the fire, fished, hiked, rode 4 wheelers, and laughed a LOT. The girl LOVES fish!!! she must have eaten 3 salmon and a trout in one sitting. Crazy kid... smores too....there went healthy, huh? :) she thought reeces cups were a GREAT idea for smores, and she was right! she hiked several miles, forded a river 4 times, and made it all the way up to Angel Falls. She continues to amaze me with her tenacity and willpower.

10...almost 11....has brought more joy and respect for just LIVING than I could have ever imagined. Having Ciarra in our lives has been a gift, and she is one of the neatest kids I know. Someone once told me that she was little and cute at 4, but by 10 she would be miserable and lonely. I can only wish I was as easygoing, popular, and happy as this child. she lives life so fully, laughs often, and just exudes confidence. And she is beautiful, inside and out. Ten has not been any kind o downer, instead it has been another year full to the brim with love and happiness. Here's to 11!

Jesse and Kristin are doing well, also. Jesse will graduate 8th grade next week. He seems to like a little girl in his class, EEK! He is a good kid, smart and funny. Kristin is enjoying her young adulthood, she isnt in many of the pics because she just isnt with us as much as when she was younger.

Make photo slide shows at www.OneTrueMedia.com

George Tiller is DEAD

2009-05-31T13:19:00.002-04:00

gunned down in front of his church this morning. an eye for several thousands of eyes, I guess.

my baby boy will graduate 8th grade this week

2009-05-31T09:32:00.004-04:00

last night was the dance. Along with wrestling, throwing balls at one another, and general little big boy stuff, there was some dancing. Sigh.

all that matters

2009-05-31T09:27:00.001-04:00

“Blessed are they who have the gift of making friends, for it is one of God's best gifts. It involves many things, but above all, the power of going out of one's self, and appreciating whatever is noble and loving in another.”

Idiots.

2009-04-28T11:04:00.000-04:00

I am not alone...thank God.

2009-04-09T09:12:00.001-04:00

BORN AGAIN AMERICAN
By Keith Carradine

Just a workin’ man without a job
It got shipped off to China via Washington, D.C.
And I know I’m nothin’ special, there are plenty more like me
Just the same
I thought I knew the rules of the game
I stood up for this country that I love
I came back from the desert to a wife and kids to feed
I’m not sayin’ Uncle Sam should give me what I need
My offer stands
I’ll pull my weight you give me half a chance

I went up to a congressman and said to him “you know
Our government is letting people down”
He said he’d need a lot of help to buck the status-quo
I said there was a bunch of us around

I’m a Born Again American, conceived in Liberty
My Bible and the Bill of Rights, my creed’s equality
I’m a Born Again American, my country ‘tis of me
And everyone who shares the dream from sea to shining sea

My brother’s welding chassis at the plant
He’s earning what our granddad did in 1948
While CEOs count bonuses behind the castle gates
How can they see
When all they care about’s the do re mi

It’s getting where there’s nowhere left to turn
Not since the crash of twenty-nine have things been so unfair
So many of our citizens are living in despair
The time has come
To reaffirm that hope’s not just for some

The promise of America’s surrendering to greed
The rule is just look out for number one
But brace yourself ‘cause some of us have sown a different seed
A harvest of the spirit has begun

I’m a Born Again American conceived in liberty
My Bible and The Bill Of Rights
My creed’s equality
A Born Again American, my country ‘tis of me
And everyone who shares the dream from sea to shining sea

It’s clear my country’s soul is on the line
She’s hungering for something that she lost along the way
The principle the framers called upon us to obey
That in this land
The people’s will must have the upper hand

I felt the calling once before and took a sacred vow
And faithful to that vow I have remained
I hear the calling once again, my country needs me now
And to her cause I have been re-ordained

I’m a Born Again American conceived in liberty
My Bible and the Bill Of Rights, all people living free
A Born Again American, my country ‘tis of me
And everyone who shares the dream
From sea to shining sea
And everyone who shares the dream
From sea to shining sea
A M E R I C A

convergence insufficiency-things you should know

2009-04-03T08:38:00.003-04:00

convergence insufficiency, a new term in our little world. I took Ciarra in for some testing recently for school, in effect it is "IQ testing". The Dr that tested her noticed some very odd things in the results, and once she showed me, I saw clearly what she meant. In some parts of the testing, Ciarra got the answers wrong, one test that comes to mind was a keyed box thing where you had to put the coded answer according to the key above into a little box, there were 15 or so little boxes under the key code. Ciarra got them all wrong...sort of. When we looked closer, she had most of them correct, but diagonally wrong by one box, she put them in the box under and to the left of the correct box. But they were for the most part correct, of course she was scored as missing them.

It was a clear indication to the Dr that something was going on with her eyes. Test after test came back as showing visual problems, of course there was plenty she got wrong just because she didnt get the question, etc, but clearly something was up with her eyes.

We had Ciarra tested a year or so ago by an eye doctor who prescribed glasses, and sent us on our way. I have had a strong feeling something more was going on, she just seemed to struggle with reading...not how to read, but the mechanics of how she held her body. It is a bit hard to explain. She always tilted her head while reading, and I have come to recognize that I do the same thing, although I know I am having terrible trouble seeing these days, I thought it was just me.

Turns out, Ciarra and I both have something called convergence insufficiency, also known as exophoria. In all my reading and trying to stay on top of medical issues with DS, I have never heard of this one. Luckily, the doc that did her IQ testing knew of a "developmental eye doc" that does very specific testing. I was honestly stunned to see the difference between regular eye exams and this one. In depth is an understatement. wow.

A few things I learned about CI:

During the act of reading, the demand is for the two eyes to turn inward so that they are aimed at the reading task. If the eyes have a tendency to deviate outward, the child must use excess effort and energy to maintain fixation on the reading task. Most studies have shown that the greater the amount of effort involved in reading, the lower will be the comprehension and the lower will be the performance. When reading, the eyes do not move smoothly over a line of print. Rather, they make a series of fixations looking from word to word. When an exophoria exists, each time fixation is broken and moved to the next word, the eyes will tend to deviate outwards and they must be brought back in to regain fixation. Human nature being what it is, the child generally has an avoidance reaction to the reading task. This is compounded by the fact that anything the child doesn't do well, he would rather not do. This is the child who looks out the window rather than paying visual attention. He is commonly given labels. He is often accused of having a short attention span and not trying. He is told that he would do better if he tried harder, but he has tried harder to no avail. He is often labeled as having dyslexia, minimal brain dysfunction, learning disability, etc. Commonly, he loses his place while reading and/or uses his finger or a marker to maintain his place. While making the eye movements during the act of reading, he might not land on the next word, but rather land a few words further on. Consequently, he commonly omits small words or confuses small words. Often, he just adds a word or two to make the sentence make sense. If the two eyes are pointing at the same point in space, a person will see the fixated object as being single. Double vision or overlapping vision (Figure #3) results if the two eyes are not exactly pointing at the same point. Don't expect a child to tell you that his vision isn't clear. He has no yardstick of comparison to inform him that his vision differs from the vision of anyone else.

A Parent's Checklist
Look for these signs and symptoms.

If you check off several items on the following checklist, consider taking your child for a vision exam.

You observe the following behavior in your child:

one eye drifts or aims in a different direction than the other (look carefully -- this can be subtle). This is significant even if it only occurs when the child is tired or stressed.

turns or tilts head to see

head is frequently tilted to one side or one shoulder is noticeably higher

squinting or closing or covering of one eye

excessive blinking or squinting
short attention span
daydreaming in class
poor handwriting
poor visual/motor skills (often called "hand-eye coordination")

problems moving in space, frequently bumps into things or drops things
clumsiness on playground or at home

While reading or doing close work your child:

holds the book or object unusually close

closes one eye or covers eye with hand

twists or tilts head toward book or object so as to favor one eye

frequently loses place and fatigues easily

uses finger to read

rubs eyes during or after short periods of reading
reversals when reading (i.e., "was" for "saw", "on" for "no", etc.)
reversals when writing (b for d, p for q, etc.)
omitting small words
confusing small words
transposition of letters and numbers (12 for 21, etc.)
loss of place when reading, line to line and word to word.
child's ability to learn verbally surpasses his ability to learn visually.

Your child frequently complains of:

only being able to read for short periods of time
headaches or eyestrain
nausea or dizziness
motion sickness
DOUBLE VISION!
Say no more. If your child reports seeing double, please take your child for a binocular vision evaluation immediately. You are invited to request a free referral at the Directory of Vision Care Providers.

Reading Skills and Binocular Visual Skills
One of the tests used in optometric offices is to have the child read words while looking into an instrument called a Telebinocular. The performance is compared between reading with either eye alone and with both eyes together. The difference in performance is often quite dramatic if there is an eye teaming problem. One eye performance might be quite satisfactory, but reading with both eyes together will be slower and many more errors will be made.

Every child with difficulty reading should be given the Convergence Insufficiency Symptom Survey pdf to see whether convengence insufficiency is contributing to the problem. The mean score for children wtih convergence insufficiency 30 vs. 8.4 (for more info, see here).

The symptoms can include eyestrain, headaches, blurred vision, sleepiness and trouble retaining information when reading. Other symptoms associated with convergence insufficiency include a "pulling" sensation around the eyes, the rubbing or closing of one eye when reading, words seeming to "jump" or "float" across the page, needing to reread the same line of words, frequent loss of place, general inability to concentrate and short attention span.

Children with this condition will not benefit from tutoring, special education or extra help from teachers until the condition is diagnosed and treated. A child can have 20/20 vision and still have this disorder. It's not routinely checked with eye exams, and schools don't test for it.

I suspect that many children out there are undiagnosed or misdiagnosed and going untreated. The treatment for convergence insufficiency disorder is noninvasive, effective, and much of it can be done at home. It involves special vision therapy that can help retrain the eyes. Interestingly enough, as the Doc spoke yesterday, I "got it" so well because she was describing ME as well. Hopefully the therapy we do for Ciarra will benefit me as well. If not, there are special prisms we can get for my glasses that will help.

http://www.add-adhd.org/vision_therapy_FAQ.html

What is Vision Therapy or Visual Training?

Vision therapy (visual training, vision training) is an individualized supervised treatment program designed to correct visual-motor and/or perceptual-cognitive deficiencies which have various causes, such as:

inadequate sensorimotor development
trauma to the nervous system (i.e., birth injury, brain trauma, closed head trauma, etc.)
stress
in some cases, contributing hereditary factors (i.e., crossed-eyes, wandering eyes)
Vision therapy trains the entire visual system which includes eyes, brain and body. However, it is important to understand that vision therapy is a form of neurological training or rehabilitation (it can be compared to some forms of occupational therapy or physical therapy). The goal of vision therapy is to train the patient's brain to use the eyes to receive information effectively, comprehend it quickly and react appropriately.

Vision therapy sessions include procedures designed to enhance the brain's ability to control eye alignment, eye movements, focusing abilities, and eye teamwork (binocular vision). Visual-motor skills and endurance are developed through the use of specialized computer and optical devices, including therapeutic lenses, prisms and filters. During the final stages of therapy, the patient's newly acquired visual skills are reinforced and made automatic through repetition and by integration with motor and cognitive skills.

Can vision therapy help children with learning problems?

Yes! Vision therapy can be an important part of the overall treatment of a child's learning problem. Vision and sensorimotor deficits can cause eyestrain, headaches, blurred or double vision, loss of place while reading, and difficulty maintaining attention on close work. Even intelligent, highly motivated children can be severely handicapped by these problems in the academic environment.

Correcting these deficits allows affected children to benefit from academic remediation and to achieve their full potential in the classroom.

Approximately 20% of school-aged children may be affected to some degree by learning related vision disorders. This percentage dramatically increases within the special education, learning disabled and remedial reading populations, where as many as 70% of the students have a significant visual component to their learning problems.

I have high hopes that Ciarra and I both can get our eyes working better. And I thought you might be interested in knowing about this hidden condition that just might be masking some of those awesome abilities our kids have. If your child fits the description, start asking questions!!

Here's looking at you, beautiful girl.

looking in ~ Ciarra's life

2009-03-27T13:48:00.003-04:00

I have had the opportunity several times this past week to see Ciarra more from the outside looking in. It has been a distinct pleasure.

Last night, I had to run her brother to the Docs, and left everyone eating supper. she was at her table in the living room. when I got home, she said the dog had eaten her supper and would I mind taking her to McDonalds? Now, Ciarra is a homebody. she likes to be here and rarely can be talked into going out. shes a tad (ok, a lot) spoiled in that she doesnt really often have wants that are unfullfilled, so it is hard to bribe her. She likes to be home, she likes to sit in her Library room and read, watch tv, color, etc. But she wanted McDonalds, and off we went. (I was thrilled she wanted to go!) I sat down, gave her the money, and let her order her meal. She did so, ver politely and carefully, cautiously enunciating every word. The lady at the counter was surely there just for us last night, I couldnt have asked for a kinder more tolerant person. She very politely took Ciarra's order and asked her questions, what grade, how old, etc. They had a very nice, normal conversation. another lady came over to give her her nuggets, and Ciarra engaged her as well. When she turned to walk to the table, I heard them say "OMG, isnt she the most adorable, polite kid EVER?" As a Mom, there are way worse things you can hear. I was proud of her, and every time something like this goes so smoothly, it gives me more faith in the future and her place in it. She will be ok, I think. As we were leaving, the lady asked me if she could give C a hot fudge sunday, and told me she thought Ciarra was beautiful and sweet. We enjoyed our meal together, talking and laughing, and I realized HOW big she is getting. I treasure these moments.

Then today I was at her school, and it was lunchtime, so I detoured to go say hi. I scoured the lunchroom, saw the aides that work in the life skills room, some of the kids, no Ciarra. she wasnt in the table I always see her at either. Then there she was, across the room, animatedly telling some story with 5-6 little girls listeningly intently, who all laughed when she was done talking. It was so normal it took my breath away. Little girls being little girls, but allowing her...special needs and all....to not only be a part of their group, but a treasured part of their group. The friendships she has are so important to her, and so fullfilling to see. They saw me coming and were all smiles. One stood to give me a hug, I noticed how tall she was and she must have read my mind, she said "Im wearinf high heels!" I love that these precious little people have been in my life for so long and that they truly and genuinely like my daughter. The one big fear I have always had was that she would not have friends. Some days, I think she has more friends than I ever will. I love that little circle of preteen heads, gathered close, whispering and giggling. I love that she is a part of it, I love that it is happening naturally, and that it is genuine. Thank God for the innocense of children, they give me hope.

beautiful song

2009-03-26T15:00:00.001-04:00

a beautiful spirit-need your prayers

2009-03-25T09:08:00.004-04:00

The song above is called Endlessslumber by Sam Chase. I heard this song a few years ago, through my daughter Kristin, who was friends with Sams sister and also with his little brother Leo. I spoke with Sam several times after, I had a feeling he was going to be somebody, he is a very talented young man. Kristin came home all excited last week because she had seen Leo, she really likes the kid.

Sam later joined with his friend Yuri to create a band that has an old sound, very reminiscient of Simon and Garfunkel.

http://www.myspace.com/samandyuri

Two Glenburn brothers were injured Sunday night when the driver lost control of his car about 6:30 p.m. as it was headed into Bangor on Broadway. A witness, who asked not to be identified, said the driver lost control just after the white station wagon passed under Interstate 95. It crossed the oncoming lanes, became airborne and struck the side of an empty two-story frame house next to the Irving Mainway. The car landed on its roof.

Sam and his little brother Leo were seriously injured in a car accident this week. I understand that an unknown medical condition caused the accident. Your prayers would be much appreciated for these two beautiful young men.

I'm Goin' Home

2009-03-24T09:06:00.002-04:00

I needed to sort a few things out in my mind yesterday, and so I took a long drive. I never intended it to be quite so far, but before I knew it, my car was heading North up 95. I was going home, to the place I grew up.If I had planned this trip, I would have brought my camera, but I didnt, so the things I saw will have to remain in my minds eye, and maybe that is for the best.
when I was born, my mom was 17 years old. she was the youngest of 15 kids, dirt poor, and had never been raised with much of anything, especially love. Somehow, she managed to have a very strong maternal instinct, and an innate ability to survive. Although I would say they made a fair number of mistakes, I understand that they were SO young, and she came into it with so little preparation. One thing she always did was love us, even when her own internal battles raged and she was not the mom from Leave It To Beaver, in her way, she loved us better than many moms who are born with silver spoons in their mouths. But we were poor. I used to think she just didnt like to eat much, then I realised she was giving my brother and I the only food there was, many times. I am not sure how we made it, no car, little food, 2 babies being raised by a teen girl. She carried us to work with her, one on each hip, a year and eleven days apart, frostbite on her own legs, but us believing it was a fun adventure.
I drove into "The County" as we call it, Aroostook County, Maine. It is a 31/2 hr drive each way. Although I am firmly rooted here in my town and have lived here virtually all of my adult life, the call of "home" is strong. Driving past the potato fields, harvesters and diggers, Mount Katahdin, and the University Of Maine at Presque Isle was an awesome feeling. I was almost home, that other home of my childhood, the place where I came from, and I was determined to take the time to see the places I havent seen in 15-20 years.
I came over the hill into Caribou, the place of my birth, and felt a rush of emotion. No matter where I go, there will never be another feeling like the one I have driving through the places of my childhood. My Aunt Betty's house, a tiny little yellow bird of a place, it never changes, although no longer hers. There is still the huge propane tank in the yard, it looks like a submarine, and thats what we used it for as kids. My cousins Beth and Lisa and Barbara and their brothers Bobby and Duane would climb inside it, pretend it was a sub, and have great adventures. Driving by the house took barely 10 seconds, but in that flash of time I remembered Barbies tomboy ways, the little hideout under the house, Beth ann trying to fly off the neighbors roof with just an umbrella to break her fall. we really believed it would work, it did for mary poppins! I remembered my Uncle Phillip getting so drunk he passed out on the couch, and us kids broke out Bettys makeup kit, and painted every inch of his face in garish colors, did his toenails and fingernails, and tied little bows into his hair. He would wake up screaming mad, and then laugh and chase us out of the house. I remembered when we lived there, before my biological dad went to prison, before Betty moved in, sitting in the dark at the kitchen table, with my dad furiously mad and me quietly trying not to gag down the cold food I despised. And I remembered me and Duane as teens, sitting in his car, up on blocks, singing Leather & Lace by Stevie Nicks, the only thing that worked on that car was the radio, but I was about 13 and hero worshipped him. I will never forget that day, and the friendship we shared. It was only a few months later that I called his house after school and lisa answered, I asked for him, and she said he couldnt come to the phone just then. I heard it in her voice, something was wrong. I was sitting at dinner that night, my mom was at work, when my stepdad answered the phone. He took a message, then dialed my mother at the nursing home where she was working, to tell her that "your idiot nephew hung himself today". And I sat there, trying to swallow, my heart was racing, but I couldnt show emotion or he would turn on me. And i knew it was my Duane, and he had promised me he never would, and I had believed him. I remembered his funeral, and a neighbor trouble maker who pulled down his turtleneck, and showed everyone the marks on his neck. I remembered my Grandmother, who had been told a different story, and the shock and dismay on her face when she knew. And I remembered going there a year or so later, when Lisa gave birth to her first child, Nikki, standing over the crib in the newly remodeled house, admiring the baby, and then realizing with a chill that I was standing in the exact spot where his body had hung, and I looked up, and the patched hole was still there. I never went back there again.
I kept driving, and checked on a property we own up there, my bio dads old family home, a trailer on a little plot of land. It was snowed in, no footsteps, meaning no one had been there causing trouble. Nothing to see, snowbanks too high to get inside, and a sigh of relief. I hate dealing with that place, the anger and resentment are still too strong. deal with it in the springtime, when we can figure out what to do with it.
I drove on, and came to the little trailer park where we lived when I was small, in the days just before my dad went to prison (again). dell-wood trailer park. I drove in, not expecting to see anything familiar, but I had forgotten that trailer parks never age, and 3 doors down on the left, there it was. Maybe it is my mind playing tricks, but I dont think so. I remembered jumping off the porch and hitting my head on the rollout window, I remember that there was an awful secret propagated there...and I remembered the little boy named Richie Plante who lived across the way, who was my brothers best friend, and who had some kind of liver or kidney disease and needed a transplant. I drove around the road and out, back onto the highway. I wanted to visit the place I spent the happiest days of my childhood. Loring Air Force Base.
When my mom remarried, a guy named Ray adopted us. (I havent seen him in 20 years) I used to think he was just a jerk, he was way too strict, and had a mean streak. But he was a few years younger than even my mother, meaning when I was 7, he was barely 21. She was 24. hardly old enough to take care of themselves, let alone 2 little kids. But they did. It makes more sense now why they screwed up sometimes, but back then I just thought he was mean. But he was in the military, and he brought us out of poverty, and to this little piece of Heaven AF base. There were green lawns, a Rec center, pool, movie theatre, woods to climb in, lakes to fish in, sports teams, and a courtyard of friends to play with. I wanted to see those places again. I hadnt been on the base since I was about 17, 23 years ago. The base actually closed in the early 90s, but in my mind, it has always been the same, just with new occupants.
I drove past what used to be the main gate, where you had to show ID to get in, and it felt a little weird just driving in, I looked to see if there was anyone in the gatehouse, but it was empty. It was a very emotional thing for me, to go back there. But it was instinctual, too, although I had not had a license when I lived there, I had ridden my bike through all of the roads that werent heavily guarded. I knew it even now, and every road filled me with memories. But as I drove, I was disappointed. Damon elementary was gone, apparently torn down. I passed beaver Dam, where we crossed the little stream to get home every day, and I could almost hear us laughing. In my minds eye, i could see myself, too, running from a boy named paul on his motorcycle, chasing me with the promise of more touching that I didnt want. I shook the memory away and kept driving. I planned to go through the housing, but there was a huge snowbank in the way. My mom told me later last night that they tore all the old houses down. acres and acres of houses...what a shame.
I drove down the main drag, past the hospital which is now some kind of adminsitrative building. Past the Youth center where I spent many many hours playing. It was closed up, unpainted, the road into its driveway blocked by snow. The playground still stood, but you could see it hadnt known the laughter of children for a very long time. Part of the roof was caved in, and it made me cry. I was sad to see the places of my childhood so neglected and unloved. so many memories, baseball games, cars lined up for a mile, parents sharing laughs the same way we do now for ours. It was all gone.
I drive through the base, past the old theatre where i watched all the early Disney movies, eiding our bikes there every weekend to see what was playing and buy the jolly rancehrs candies we loved so much. I last went there when I was a teen with Jim and our friends Peter & Theresa to see Children of the Corn. I remember Jim and I snuck out early, it was pouring rain and pete came out to bring the car around. Jim and I were hiding in the backseat, when he got in I grabbed his shoulder and said in my scariest corn voise "He wants you too, malachi!" peter jumped. I laughed as I drove away, remembering that day and the fun we used to have there. Past the old pool, the heavy air and the smell of sweat from the locker rooms. I often dream about that place, and I wonder how we as kids were able to stay safe in a building chock full of young military men. Respect, trust, whatever...we were always safe there. Past the NCO club, where my mom won my hope chest at Bingo one night. To the flightline, and the hangars, where housands of us gathered to watch the air shows, the Thunderbirds roaring overhead, Blue Angels too. The low building where we climbed to watch the planes, sitting in the belly of a KC135, walking on the wings of the biggest military planes of the day. Running through the hangars, watching the younger guys salute my dad, sitting in the boom of a tanker, imagining what it was like to fly. The hangars were all chipped and rusty, doors closed. In my mind I could see the sharp military men and women, the pride in the upkeep, the gleaming windows and smartly painted doors. And I cried. It felt sad to be there, remembering the roar of the crowd, the decency and kindness of the people there. In my mind, I said goodbye to Ray, and I thanked him for giving us those years. He did the best he could.
I drove past base Ops, where I met Jim on a bus one day 25 years ago, Feb 25th, during the winterama, when boy and girl scouts gathered to spend the weekend in the snow. I had a group of little girls, I was a jr leader. he had a group of little boys, he was one of the older kids who helped with the troop. It was pouring rain, and I had just sent all my girls off for the day, they were too little to spend the night. I was waiting for my bus, when I heard one honk. I thought it was mine, but it was Jim. he had seen me standing there, and wanted me to look up. said he wanted to see my eyes again, he had seen me in the base Ops building. I had taken my glasses off because of the rain, and was half blind. I ran to the door, thinking it was my bus, and was too cool to let them think I made a mistake, plus he was sitting there so handsome, looking down at me with a shy smile. I climbed on board and found a seat in the back, asked if they would mind me catching a ride. It wasnt long before he was sitting beside me in the back seat, holding my hand. Memories....
I left the base, past the old restaurants, through the town we moved to when we moved off the base. Past my high school, my childhood best friends Lisas house. I couldnt believe it when her parents still lived there. Her mom came to the door, peeked through, hollered "Bernie, can you believe it, its Lisas friend Michelle!" MANy pounds heavier, many years older, but she knew it was me by my eyes, she said. she gave me Lisas new number, hugged me 50 times or so, and told me to keep in touch. I got the distinct feeling this was goodbye for real, and there were tears in my eyes when I said it.
Past Main street, which is mostly boarded up now, the little grocery store I worked at gone. Up my old street, past the twiins house where we climbed trees. past Cindys house, where we had parties we shouldnt have. Past my neighbors house, who hid the big black leather bar Ronnie and I bought my parents one Christmas (which is the one thing from my childhood i still have) and there it was....my house. so much happened there, good and bad. Prom, divorce, abuse, love, sneaking pepsis from the fridge, latchkey kids who dared to tough dads stereo even though it was clearly against the rules. Listening to my parents friends, drunk and laughing, wishing I could be a part of the fun, wondering why they thought it was funny to sing into the vacuum hose? My mom kicking me out, and me getting arrested for kicking the door down and taking my stuff. Michael standing in the doorway, telling me Wnedy was pregnant and he was leaving for the Army. My parents sending me to bed, sitting Jim down to have "the talk". Ronnie going away to join the Air Force, Ray leaving, the little car he bought himself, that seemed like a slap in the face because we were eating with the help of food stamps. Science fairs and poetry contests, a little puppy named Charlie in the mailbox, Dutchess the lab who was our glue. Late nights, when 5 minutes late meant I was grounded, the little cubby closet in my room, papered with Shaun Cassidy and leif garrett posters, only big enough for me to squeeze into, to be alone and away fromt he noise. The house is much prettier now, fancier. It is the same house, but too different. Just memories, keep driving.
I drove into Jims hometown, two towns over from mine. Catholic, french-speaking people with strong values and work ethics. I didnt even drive through town, not past his families old house, not past the ancient trailer we lived in when kristin was born. straight to the nursing home, to see his mom. It has been over 5 years, and I am ashamed to admit that. she is in late stage Alzheimers, and I have been scared. I go to the door, and am asking the nurse at the desk if she can show me to her room, when another nurse walking towards me pushing a wheelcahir says "Oh, right here And I look down into the chair at this tiny woman with grey hair and a frozen smile, and it takes me a minute, and I am ashamed. I wheel her back into her room, pull up a chair, and hold her hand. I cant be sure she really knows it is me, but I think she does. I tell her all about the kids, and Jim, tell her how sorry I am, how beautiful she is...and she is....alzheimers can ravage the brain, but she still has the same eyes of the man I love, the same beautiful skin and small hands. I love this woman in a way I cant explain, and I need her to know that. I try not to cry, but I cant help it. The floodgates open, and I am telling her that I miss her, her cooking, her laughter, the way she held us all together as a family. I tell her that we dont lock kristin in the closet anymore (an inside joke) and I swear she smiles at that. she tries to whisper something, although I have been told she doesnt talk. I listen close, but I cant catch it, although I am sure the word love is in there. I squeeze her hand, now covered by my tears, and tell her I love her too. Her room is full of pictures and beautiful things, unlike that of her roomate, it is clear that she matters to people. I am sad for both of them, and as sad for her as the other, because caring for someone doesnt just mean sending photos at Christmas. It means sitting there, holding their hand, being there, even if there is only the slightest glimmer of recognition. For her, not for me. And I am sad that I have allowed fear and business to consume the years, that Jim has managed to get here half a dozen times without me. And I promise her I will be back, that it doesnt matter how far away we live, we want to see her. and I tell her her youngest baby is doing well, that Jim is successful and happy, mostly, and that we are ok. And I know the smile is there because she hears me. I kiss her forehead and tell her I have to go. and I take her to the lunchroom so she can be fed, and I hold her hand for a minute and contemplate the promise I just made, as I look around me and notice the elderly man holding the hand of the wife who seems not to even know he is there, telling her stories about their grandchildren, devotion. We make time for so many other things, we HAVE to make time for this woman we so love. I hate leaving her, and I cry all the way to the door, where a sweet elderly man tells me the combination to the door code, and I think with amusement about how he could escape, if he wanted to, but instead he makes it a point to be the one who is the gentleman, escorting guests out, showing them how to be free of the place that he may never leave. Life is ironic, isnt it? We hurry to grow up, then we want to revisit our childhoods. we think we want to get older, and then we look it in the eye with fear. I feel like I said goodbye to some things today, and maybe grew a little as a person in the meantime. I hope so anyway. It was a long drive home.

not funny at all-Obama makes Special Olympics joke

2009-03-19T21:45:00.002-04:00

President Obama sat down with Jay Leno on Thursday for a late-night TV interview that spanned a range of topics -- from the economic crisis to the presidential dog -- and even, at one point, featured the president joking that his bowling ability was suitable for the Special Olympics.

The bowling comment was a reminder of his poor performance on the lanes last year during one of his campaign stops. Obama bragged to "The Tonight Show" that he recently bowled 129 on the White House alley.

"It's like Special Olympics," he said.

how's that, Obama? It is like the SO in what way, exactly? The folks I know who bowl for SO could kick your liberal butt at it. Kinda like "retard" with a spin, I guess? If you suck at sports, you must be "in the Special Olympics"....only....the Special Olympians are better than you by far. and Im guessing most of them have more class, too. wonder how Tim Shriver likes your idiotic "joke"?

Jesse's Allstars Basketball

2009-03-18T09:54:00.001-04:00

Communicating Partners- a review

2009-03-16T09:20:00.003-04:00

Play To Talk: A Practical Guide to Help Your Late-Talking Child Join the Conversation. Book Review by Michelle Harmon. E-mail: mome23kjnc@roadrunner.com. Copyright © 2008 Michelle Harmon. All rights reserved. Reprinted with the permission of the author.

Dr. James MacDonald has worked tirelessly for many years teaching parents to be their children's most effective communication partners and has trained over 1500 therapists and teachers to work with language delayed children. "Dr. Jim" was a professor of Speech and Language pathology and Developmental disabilities at the Ohio State University from 1971 -1995. He directed the Parent Child Communication Clinic at the Nisonger Center during those years. In 1995, he took early retirement to devote his time to building parent-based programs and to direct the Communicating Partners Center.

Communicating Partners (CP) has provided information and hope to families and the children they love for many years. With the release of his latest book Play To Talk: A Practical Guide to Help Your Late-Talking Child Join the Conversation (Perfect Paperback), Dr. Jim has brought his strategies and practical ideas to life in an easy-to-read, practical guide format.

The book uses real-life stories and lots of photographs to teach the methods he espouses, and that have worked so well for the families he has devoted his life to helping.

The book is both a Home Coaching Model, rife with day to day suggestions and ideas to make communication with children playful and interactive, and a Professional Model, a clinically-proven model for Speech and Language therapy that has been tested for over 30 years.

CP meets the needs of parents and professionals alike, because it is child-focused and responsive to the child's strengths and innate abilities. Rather than focusing on a lack of speech, the program reminds its users to focus on what the child can do, and to meet them at their level through play and gentle interaction. This approach allows "Speech Therapy" to occur even with the youngest of infants, as it builds on sounds and behaviors all children make, with turn-taking, imitation, and humor.

All children have stages of Communicative Development, but without practice and a clear understanding of the role a partner in that communication plays, they can get "stuck" at certain intervals and stop trying to communicate. What adults can do to create communicative children is:

-Increase the child's social interactions by using any behaviors the child can already do.

-Help the child learn social play, turn-taking, imitating and vocalizing. As these skills grow, CP urges more intentional, focused communication, with an early emphasis on non-verbal communication prior to words. With the groundwork laid, a Communicating Partner moves on to

-Help the child use language for a variety of reasons, especially social reasons.

-Refine conversations skills.

-Help the child learn how to be social and communicative in civil, empathetic and socially productive ways.

The second chapter of this amazing book deals with the real reasons why CP is so effective. It clearly shows the different ways children and adults see their world, and how to bridge the gap between them by teaching the adult how to enter the child's world. Children live mainly in a world of sensation and action. Adults live mainly in a world of thought and language. "When adults only talk with children they often miss the child's world of experiences and fail to connect. The more connections you share, the more development happens." Those connections are generally through play and imitation, rather than through words. The book gives terrific ideas of how exactly to enter a child's world and how to be balanced, responsive, playful and affirming.

One of the key differences in the CP method versus that of other Speech Therapy methods is Balance. Rather than see the adult as the provider and the child as the consumer, the program addresses the need for "balanced communication".

Understanding Balance

"In many years of research and clinical practice, we have found that a majority of interactions with children with developmental delays are out of balance. Partners often dominate the child with talk and action, often unwittingly forcing the child into a passive role. He listens and watches more than he communicates or acts. ....Balance is a strategy that parents can use to help the child play a more active role in interactions. When partners learn to allow the child time to do or say what he can, they often discover that he can do much more than they realized."

Another vital point CP makes is that an adult must be responsive to the needs of the child.

"A common concern with children is that they often make more sounds when they are alone than when they are with people. They seem to not have learned that sounds can be powerful ways to communicate. When parents begin responding to a child's sounds, even unclear ones or just playful ones, the child learns that sounds are for communicating: a critical step toward talking. Your child can begin to communicate with absolutely any physical or vocal behavior that you respond to regularly. If you sensitively respond to a behavior as if it were a meaningful communication, it will become a meaningful communication over time."

Play to Talk teaches the important skill of matching.

"Matching is about being 'developmentally possible' for your child. Matching involves doing actions your child can do and using sounds and words you child can say. To help your child learn new actions, sounds and words, try 'progressive matching'— do what he is doing or make sounds like the ones he is making then show a next possible step. Add another step or a new idea to an action sequence. Expand language in small steps by translating sounds into words or by expanding a one-word statement into two words. Add to whatever your child is currently doing in order to help him take a next step."

With the methods explained in language that makes perfect sense, the book moves on to creating a practice plan. The chapter provides step-by-step guidance for creating a practice plan, a straightforward, written plan of action that details how and when partners will practice the responsive strategies with a child. The chapter helps a parent evaluate where a child currently is and what the immediate and long-term goals will be. It evaluates the parent, the child, even the environment, with questions meant to really delve into a plan of action. Examples of plans are given, and Dr. Jim gives advice on how to record progress.

Chapter 4 explores the nitty gritty, how to create activities and possibilities to practice the CP methods you have learned about. It explains People Play, and the necessity of teaching a child to enjoy playing with people rather than objects early on. It uses the obvious infancy games of peek-a-boo, tickling, etc to learn turn-taking and interaction with people for fun. But CP reminds its users that the games are done with the intention of fostering communication and give-and-take that is so vital to speech later on.

In Chapter 5, clear examples of how to make CP work in daily life are given, as well as insights into things that can affect communication negatively, such as sensory issues and behaviors. CP focuses on natural partner responses as the primary reward or reinforcer. The key to natural reinforcement is to continue to do socially whatever keeps the child interacting in desirable ways. Dr. Jim offers insight into possible causes of problem behaviors, and really explains why a depressed, bored, or over-stimulated child will act out. He gives great suggestions for reconnecting with the child and returning to a good balanced relationship.

The book goes on to discuss daily activities that promote communication and speech, and how learning to be a communicator has profound effects on the entire life of the child and the family.

As a long-time user of CP and a mother of a child with Down syndrome, I can personally attest to the methods and theories Dr. Jim espouses. When my daughter was 2 years old, I found his program. From that day forward, I began to change how I interacted with her, and learned to be a much better communicating partner for her so she could be one for me, and she has blossomed into a child who is quite capable of holding her own in a conversation. I especially like that Dr. Jim recognizes the power of parents in their children's lives, it is a position far more powerful and capable than that of any speech and language professional. His methods of mutual respect, humor, and kindness really work. I like to say that what we are looking for is not really "Speech", it is communication, and there really is a difference. Communicating Partners gets that, and this new book brings real life context to the ideas, and makes them easy to understand and pursue. I would recommend this book, and Communicating Partners in general to any parent of a child with Down syndrome, from infancy to adulthood, who worries that their child will not be able to communicate their wants and needs to them. Not all children will have a full language, but with Dr. Jim's suggestions, virtually all of them will be able to communicate their wants and needs well and to be able to feel heard by the people who love them. I highly recommend this book.

a discussion on waivers, medicaid eligibility, etc for kids with DS

2009-03-13T09:27:00.001-04:00

WAIVERS BY STATE

MR WAIVERS, WHAT THE HECK ARE THEY?

IN MAINE, THE WAIVER IS AS FOLLOWS:

Home and Community Based Waiver Services for Persons with Mental Retardation (HCBW)
This is a federally approved alternative to ICF-MR services. It is intended to reduce the reliance on institutional care in Maine. It offers a wide array of services that allow each person's unique needs to be planned for and addressed in a community setting. BDS determines eligibility for this benefit. The most commonly used services in the waiver program are:

Residential Training services: Offered only in a DHS licensed home, this service provides training and support in areas such as activities of daily living, social and adaptive skills, and community inclusion.

Personal Support Services:Services offer assistance and support in independent living. Also these services help the individual cope with the demands at home and in the community.

Day Habilitation Services: These types of services focus on health and social services such as behavior management, skills development, and physical development.

Supported Employment: This service provides ongoing support to those who need it in order to perform in a work setting at the prevailing wage.

Other Waiver Services: The following are additional services available through the Waiver: respite care, environmental modification, communication assessment, crisis intervention, and consultative services. (These services have limited availability or specific criteria for eligibility.)

EACH STATE VARIES. PLEASE CLICK THE ABOVE LINK TO FIND YOUR STATE. MR WAIVERS ALLOW WHAT IS CALLED A "FUNDING STREAM" FOR YOUR CHILD AS THEY BECOME ADULTS. IT ASSURES SERVICES WILL CONTINUE. IN MANY STATES, THERE ARE VERY LONG WAITING LISTS. MANY SUGGEST THAT YOU APPLY AS YOUNBG AS AGE 10 TO GET ON THE WAIVER WAITING LIST. IT IS IMPERATIVE THAT YOU DO SO AS YOUR CHILD APPROACHES THEIR TEEN YEARS.

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Waiver programs are so-called because they involve the 'waiving' of some statutory rule(s) of Medicaid such as the requirement that all eligible persons within a state be offered the same services. States apply to the Center for Medicare and Medicaid Services (CMS) for waiver approval. Medicaid waivers can be tailored by states to meet their local needs and so may have specific eligibility criteria applied (e.g. serving a particular population group or area). States can limit the number of people served on waiver programs by specifying a certain number of 'slots'. The waivers have limited time duration and states are required to apply for extensions if necessary.
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Types of Medicaid WaiversQuote:
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Two Medicaid waivers frequently used by states are 1915(b) and 1915(c) waivers (referring to different sections of the Social Security Act). 1915(b) waivers provide managed care services to Medicaid populations and 1915(c) waivers enable states to provide HCBS to people who would otherwise be institutionalized. There are different sub-groups of these waivers, for example 1915(c) 'model' waivers are intended to allow states to test new HCBS and have an upper limit of 200 slots. Programs authorized under Section 1115 of the Social Security Act allow experiments, pilot or demonstration projects that promote the objectives of the Medicaid policy1.
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THE MR WAIVER IS ONE OF THOSE TIMES YOU WANT YOUR KID TO "TEST DOWN" OR BE HALF ASLEEP DURING EVALUATION. IT IS ABSOLUTELY NOT THE TIME TO TOOT THEIR HORN AND TELL THE CASE WORKERS HOW AWESOME THEY ARE AND THEIR NEWEST FEAT. THE WAIVER IS DEPENDANT ON THEM NEEDING A CERTAIN LEVEL OF CARE. THAT LEVEL IS OFTEN CALLED "INSTITUTIONAL LEVEL OF CARE" ALTHOUGH IT DOESNT MEAN YOUR CHILD MUST BE IN AN INSTITUTION, JUST THAT THEY COULD BE, BASED ON THEIR NEEDS.

MR WAIVERS ARE MOSTLY "CONSUMER DIRECTED". MEANING THEY ARE SET UP WITH THE SPECIFIC NEEDS OF THE CLIENT. THEY CAN OFTEN HIRE FAMILY MEMBERS TO DO THEIR DAILY CARE NEEDS, OR EVEN ARRANGE FOR PAYMENT FOR AN APARTMENT OVER THE GARAGE FOR WHICH THE RENT IS PAID BY THE WAIVER TO YOU, THE PARENTS. THIS PROGRAM IS THE KEY TO FUTURE RESOURCES FOR YOUR CHILD. REMEMBER, AFTER AGE 21, AFTER SCHOOL IS REQUIRED TO HELP YOU, YOUR CHILD WILL STILL HAVE NEEDS. THEY WILL NO LONGER HAVE IEP'S, THEY WILL NEED THE MR WAIVER.

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the following is copied from an old post...years old, most of the info still pertains, but please check with your local agencies:

you may be applying for the MR Medicaid Waiver. This is a funding stream for a lifetime of adult services, so you have to be able to show "a continuing need." It is important to stress that your child may never be able to live completely on his own and would always need support.

When applying for adult benefits, it is not time to "show off" what a person can do. It is time to show in detail the "level of support" a person needs. I know it is very hard to do when you are still in a "school mindset," but it is necessary.

For example - If he can't be left alone at home on his own, then he does need continuous daily supervision.

Does he Cook? - Well this really means can he cook what he wants, when he wants, using anythng in the kitchen on his own. So in terms of supervision, he probably does not cook.... or within very limited and defined means.

- Microwave only,
- Microwave and stove top only,
- Microwave, stove top and oven

- Any time on his own
- Any time an adult is in the house
- Only if an adult is in the kitchen
- Only if an adult is one-on-one with him

When I give parents an example of what to think of, I say to imagine their child was placed in a brand new apartment or even house on his own, but knowing there was say a two-way mirror or something so he would be in no imminent danger, but no one would be there to assist him directly on anything or even monitor him. Then from the time he got up until the time he went to bed,what could he do - AND HOW WELL COULD HE DO IT?

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The Mental Retardation Medicaid Waiver in Virginia can be applied for at any time, and here it done through the Regional Community Services Board or the MR/MI agency. To actually get a waiver slot, one does have to be eligible, if not using, Medicaid Health Insurance. I advise applying for this ASAP as there are usually very long waiting lists.

If one applies and recieves SSI for even one month, then you can request the short two-page form for your teen from the local Dept. of Social Services and it is a pretty routine process.
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Any person with DS can apply at any time for a Mental Retardation Waiver funding stream. For example ^&*() several months ago got it for her out in Iowa as there was no waiting list in her area and maybe in the state. %^&*( is a middle school student, and her Mom is using it for respite and some community based outings. The great thing is that once accessed the funding will be there later on for day activity programs if one is not able to work, for in-home services, respite and residential placement, too.

Again, it is good to get on any official list as soon as possible. One needs to see how a state uses a Waiting List. Some may base openings on length of time on a waiting list, while others may strictly base it on necessity or urgent need.
And, you just never know when a legislature might allocate more money so that there might be several openings at one time, and you would hate to not have a child or adult on the list. I mean it could be that a young child with a family in crisis who might be at-risk of immediate institutionalization might be given a waiver if the need was judged to be the most acute.

Once approved through a verbal Level of Functioning Test/Inventory, then ask about criteria to get on the Emergency or Urgent Waiting List. Let your Case Manager know of any factors which might raise your chance of getting bumped up the list. (parents age, health, emotional issues) I hate to say it because right now in so many states an MR Waiver is "crisis driven," it is not really something you wish to get, although you really need it for adult services.
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1- Supplemental Security Income - SSI which is the cash benefit which at age 18 a teen can apply for as a "family of one." Currently a full payment is $658 a month. *Call Social Security Administration 800 line or the local area office for information and a form. Also look online for great information.

2- Medicaid Health Insurance - Again at age 18 can be applied for by a teen at age 18 as a "family of one." You want to establish the eligibility because you need this eligibility if you want to qualify and get a waiver. You could also use it as a secondary insurance if your teen can be on your family policy. Or you can use it as the teen health insurance policy. *Call your local Department of Social Services for a form. Again, if the teen can get SSI for even one month,you can use the much shorter two-page form.

3- Waivers - Each state has different kinds of waivers - which in the case of the Mental Retardation Medicaid Waiver means that it provides funding for services to keep one at risk or institutionalization in the community. Don't get too upset because the criteria for "institutionalization" are not all that severe overall. There are other kinds of waivers for different disabilities including perhaps for those with mental illness, those needing assistive technology etc.

a- Usually it is the Mental Health Agency that one contacts about whether there is an MR Waiver in your state. Again you can apply for it at any age.

b- Usually, there are waiting lists whether at the state level or at the community level because of limited funding for slots. Again, you need to see if your state maintains just one huge state list or how it is devided by regions or communities. Then contact where you fall for more details. And then see how the waiting list is done - is it length of time on the list - if so, get on it at birth. Usually, however, it is based upon emergency need criteria, which in many cases means aging out parents or a "family crisis" of one sort or another.

c- First off, find out the process to qualify and do so for a child, teen or adult.

d- Second of all, find out how to get on the Emergency Waiting List - if you meet any of the criteria because this is usually where all placements are made from.

e- Do check out all criteria for receiving an MR Waiver now or in the future in terms of income, resources, working and earnings just to know.

Quote:
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Everyone with a child with Down syndrome needs to:

1- Find out what Waiver programs exist in their state.

2- Is there a statewide waiting list or a more regional one? Then is there just one big list or an Emergency or Urgent Need sublist and what are the criteria to be placed on that?

3- Find out how placement are made - ie. from length of time on the waiting list or based upon the need of the family/applicant's situation. This will give you an idea if applying early is of necessity or not.

4- ALWAYS ACCEPT A MEDICAID WAIVER SLOT because as long as you use one service with a certain time period of being offered, your son or daughter will be able to access the range of services offered in your state.

5- Note a Medicaid Waiver slot is not portable from one state to another. Now the individual may be placed at the top of a list if really needy, but he/she may need to begin the process all over in another state.

6- Medicaid Health Insurance does not change from state to state. However, the services offered in each state will vary.

***And don't think that any discussion of cuts in Medicaid may not well impact just how much state funds there are for Medicaid Waiver slots. A Waiver is a federal/state match of funds.
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Each state has different waiver programs, which means the program waives the normal requirements and expense limitations on Medicaid funds to allow for use by the disabled. So if you wouldn't normally qualify for Medicaid because of your income, that is waived because you or a family member has a disability. However, its complicated - each state has different waiver programs, and each program may have different eligibility requirements for either need or income.

The link I posted at the top is where you can find all the waiver programs for any state

And yes, if you're already on regular Medicaid, a waiver might pay for additional services or equipment, so it's worth applying for. The best policy is to always apply - if you aren't eligibile, then you'll know, and if you are, then you'll get the benefits or get on the waiting list. Generally, a waiting list is just that - you get nothing until your number comes up, and then you get everything. At least that's how it works in my state.

Quote:
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In Virginia, the Developmental Disabilities Medicaid Waiver does not cover individuals with Mental Retardation because there was the Mental Retardation Medicaid Waiver in place. The DD Waiver in Virginia does not provide funding for residential programs so this is one key difference.

In Virginia, the DD Waiver provides services for those with cerebral palsy, autism, and other developmental disabilities which result in cognitive delay and other limitations.
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The MR waiver is often thought of as a "ticket" because services such as respite and community supports are not tied to family income as so many other supports for special needs kids are. Once you are on the MR waiver it makes the whole path for services and medicaid so much easier .

QUESTIONS TO ASK...YOU USUALLY CAN APPLY FOR THE MR WAIVER AT ANY AGE

This can be a very confusing topic because you are actually seeking information on a few things:

1- Who in your state can qualify for Medicaid Health Insurance birth to 18/19 as a child? There is an income or means test.

2- Who in your state can qualify for a Mental Retardation Waiver? There is a level of functioning test.

3- When can one apply for a Mental Retardation Waiver slot, especially if there is a Waiting List?

4- What are the criteria to be placed on the Emergency or Urgent Care Waiting List? (This is the list to be served first if there is a Waiting List.)

- PLEASE NOTE: THERE IS NO INCOME GUIDELINES TO BE MET TO GET AN MR WAIVER. IT IS BASED ON THE DISABILITY AND LEVEL OF FUNCTIONING OF THE INDIVIDUAL. MOST INDIVIDUALS WITH DS WILL MEET IT EASILY.

***********************************************************

there are tricks and secrets to getting Social Security, one is knowing the laws

SS RED BOOK

disability secrets/

I am SUCH a dog lover...forgive me

2009-03-09T18:38:00.000-04:00

but THAT is some funny doodoo.

advocacy alert-write to the editor get this removed

2009-03-09T05:25:00.003-04:00

http://www.newdesignworld.com/press/story/9641

People with Down syndrome in blue collar job

People with Down syndrome in blue collar job

Posted by seodowns 4 hours ago (http://www.downssyndromeinfo.com) View profile
Category: World & Business | Tags: beat down syndrome treatment for down syndrome cures for down syndrome defeat down syndrome

An ugly face, disability in self caring, low IQ and a many similar characteristics are normal identities of Down syndrome. Though, the person suffering from Down syndrome is not self responsible for the disease but still bears the tag of mental retarded personality. Being the victim of 21st chromosome or Down syndrome is like stigma in the society. So, the premier online website downssyndromeinfo.com has taken a wise initiative and launched its all new e-guide for the friends and family of Down syndrome victims.

It is an ultimate fact that there are no absolute cures for Down syndrome but we can minimize its ultimate impact on our day-to-day life. This guide helps in removing the stigma of parasite for all Down syndrome victims. One must understand that even Down syndrome victims are normal person as we are. There are laws in almost every country for the ensuring proper growth and career prospect of Down syndrome victims. For instance, one can check out section 504 of The Rehabilitation Act of 1973, The Education for All Handicapped Children Act of 1975, and the Americans with Disabilities Act of 1991. Even, the federal laws were passed to ensure adequate protection for the people with Down syndrome.

http://www.newdesignworld.com/press/contact-editor/?Amy-Stringer-in-World-&-BusinessAmy stringer is the Editor for this Business page. Contact her and let her know what we think of this disgusting "journalism". I have yet to see an UGLY child, DS or not. And neither Ciarra nor I nor any other person I have ever met with Ds is a VICTIM. Go on, take a stand. send her a picture of your ugly kid.

Nathan Vredevelt died today.

2009-03-05T17:54:00.000-05:00

“Hi guys, I’m home! Jesus is awesome! I’ll see you when you get here!!” Love Nathan

Nathan Charles Vredevelt experienced heaven this afternoon. A memorial service will be held Tuesday, March 10 at 7:00pm at East Hill Church, 701 N. Main, Gresham, Oregon. The community is welcome to attend.

The funeral service will be private.

John Vredevelt (aka Dad) is pastor of RADIANT – A Jesus Church. RADIANT is a non-denominational church that will hold its inaugural service on Sunday, March 8th at 10:30am. At this time, John and Pam (aka mom) are scheduled to speak. RADIANT meets in the gym of Portland Adventist Elementary School at 3990 NW 1st Street, Gresham, Oregon. The church’s website is www.radiantjesuschurch.tv.

tragedy in the little world of Down syndrome-Angel Behind the Rocking Chair

2009-03-05T08:54:00.004-05:00

when Ciarra was born, someone very dear to me sent me a copy of the book Angel Behind the Rocking Chair, by Pam Vredevelt. It was the first book I had ever read about DS, and it touched my heart. It was about a little boy named Nathan, who has DS, and the ways he taught them to be closer to God.
Chapter 10 was called "Wanderings" and for any parent of a child with DS who has been labeled an "escape artist" you will know what that chapter is about. In this story, it was about Nathan's constant wandering, and his family's battle to keep him safe. The broader story was about how we all wander from God sometimes. The chapter detailed some humorous, but scary times that nathan wandered off. To a neighbors house, to the snowy front yard, to anywhere his tiny feet could carry him in search of adventure.

Fast forward ten years. Nathan is now a teen, and he loves the Portland Trail Blazers. He is at the Rose Garden with family and friends, and Nathan the wanderer finds a bathroom door locked, and goes looking for another one. somehow, he gets turned around, and ends up outside. For reasons no one will ever know, he tries to cross Interstate 5. This time, there is no one to catch him before danger strikes. Hit by one car, he is hurled headfirst into another. Critically injured. His family, looking for him, hears wors that a young teen has been struck by a car on the highway. With sinking hearts, they know it must be their Nathan.

Nathan Vredevelt is in critical condition at Legacy Emanuel Hospital & Health Center. His injuries are extensive, including fractures and massive head trauma. His family is with him. His sister Jessie writes:

Nathan Vredevelt is 16 years old and loved by so many.

Sunday night March 1, 2009, Nathan was struck by a car in Portland, Oregon. Nathan is in critical condition. He sustained broken thighs, pelvis and a head trauma. We are in the waiting game now; waiting for the swelling of his brain to go down before the Doctors can estimate how extensive his injuries are. He's being well cared for by the staff at Emmaunel Hospital and by his family.

We ask that everyone please continue to pray for Nathan and for our family as we navigate this difficult time. For the time being, the hospital is limiting Nathan's visitors to immediate family only.

We set up this site to pass on updates from our family and as a place for people to share their love for Nathan. We look forward to the encouragement we will get from your stories and memories with Nathan. We feel your prayers, your support is overwhelmingly beautiful. Jesus is Lord and he is cradeling Nathan as the Doctors keep him comfortable. God is good and the best is yet to come.

**Update Tuesday, March 3rd 11:26 am

Mom and Dad went home last night and finally got some sleep. Ben, David Dempsy, and Alex Lesser stayed with Nathan through the night, playing the guitar and singing worship songs, I know in my spirit that Nathan was participating in his spirit. I came in to be with Nathan this am at 9 and the boys went to bed. Nathan's wonderful nurse Noel updated me that the pressure in Nathan’s brain had increased from a stable pt.5 to the 30's this am at around 6. They scheduled him for CAT scan later today. They are preparing to take him down now as I am typing this. Good news is that around 10:30 am Nathans cranial pressure went back down to pt.6 this is stable and our nurse is happy with where it is at.

The night of Nathan's accident they took Nathan in for neurosurgery and preformed a crainioctomy (spelling?) They removed a portion of his skull on the right side of his head to relive the intense pressure from the impact. Nathan was under the care of one of the best neurosurgeons in the Portland area, Dr. Jeff Chen. His quiet demeanor put us all at peace, even as he was very straight forward about how bad Nathan's condition was. Mom asserted to Dr. Chen that she was getting the feeling that he wasn't hopeful, Dr. Chen said that the procedure went without a flaw but the extent of the brain injury is probably sever and that he, indeed, wasn't hopeful.

We are praying that God will free Nathan, whether that means complete healing and restoration, or, heaven. I can honestly say we all, Mom Dad Ben and I, have total peace. If Nathan goes to be with the Lord we are all jealous. Dad was saying how Nathan will be a choir director in Heaven... He'll be rocking out with Jesus all day long and he'll be able to sing on tune!

I will update with results from the CAT scan. Thank you for your prayers, we feel them, we are being carried by God's love and I can feel Jesus cradling Nathan. We love you all. Jessie

Nathan's story has inspired so many people, he was a very real person even though we never met him. My heart goes out to his family. I hope that you will send prayers for him, too. Having watched our friend's son Nicholas make a miraculous recovery from a very similar accident (right down to the broken femur) we know that God hears our prayers. Join me in making them extra loud and insistent?

ketchup

2009-03-02T15:01:00.005-05:00

catching up here:

I and the kids had a nasty virus/cold thing for a few weeks, it kicked our butts. Coincidentally, my computer ALSO caught a bug, it was really imeding my writing abilities, dropping letters etc, it was driving me nutty frankly. Thankfully, we are all better now. So some "ketchup":

Valentines was nice, Jim brought all of us gifts, which was very sweet. Ciarra is such a daddy's girl.

Jesse is on the allstars basketball team. He is not as strong in basketball as in football, but I was very proud of him for trying out this year. He has refused to for years because he knows he won't be "the best", and he is very self conscious of himself when it comes to sports. He is a very good football player. The experience he is gaining on this team has been wonderful. His coach does an amazing job of playing all the kids, even the less capable ones. Jesse is very good at defense, he is a mean rebounder, but not as great at offense. He has had some good plays and some not so good. Regardless, his team won the tournament this weekend! I was excited for them. He is #31.

A friend of ours young son was involved in a terrible car accident. His name is Nick. He suffered massive head injuries and other broken bones. 6 weeks after the accident, Nick left the hospital. The kid who wasnt supposed to make it did, and he is thriving. He still has some effects of traumatic brain injury, but he is a walking talking miracle. we are SO profoundly grateful he was spared. he has a wonderful community and a terrific family, SO many prayers went up. Thank God for the biggest favors.

another little friend was not so lucky. Our little buddy Joshua died this week. Joshie was 15, he had hypoplastic left heart syndrome, and he was never supposed to survive infancy. Joshs big dark eyelashes and beautiful smile will remain with us forever. His funeral is tonight, althought we are getting walloped with snow and may not make it over. Watching two young boys go through so much makes us treasure every minute with our own children. There is a commercial that says "Life happens fast"...that is so true. Hug your kids today.

while I was wallowing

2009-02-14T09:17:00.006-05:00

a few months before Christmas last year, I re-discovered Reece's Rainbow. Immediately my heart became heavy, the weight of so many children with Down syndrome and other disabilities with so much need was tremendous. I have a heart that doesn't do well leaving things alone, and so I found myself sucked in, desperate to help. One little boy grabbed my heart so tightly, his name was Aleksa, and oh, how I wanted to make him mine.

Aleksa had the softest little smile, I imagined teaching him to ride a bike and dressing him in warm jammies, snuggling in with him and loving him so much that he would never even remember that he had been an orphan once. For months, I poured my soul into RR, wanting to make a difference for these precious children. I helped spread the word, and in some tiny ways maybe made a difference. I was heartened to see several of the kids on the list coming home, and grateful to be closely involved when one family went to bring their children home and helping from a bit further away when another came home needing some help with feeding. I loved being a part of RR in my small way. But it was never enough.

Children were still dying, bureaucracy was still costing these children families, costs were exorbitant. I was thrilled to see so many coming home, but at the same time growing more and more sad because I couldn't resolve my own desires with reality. I wanted Aleksa, and he needed a family. But he needed a mother who was absolutely sure she wanted him for him, and that the ghosts of another little boy named Alex weren't playing a part in the overwhelming desire to bring him home. Aleksa was not Alex, and I still needed to get my own head screwed on straight. There was also the matter of a promise we had made to one another, that we would never foster or adopt again, because of the pain of losing our Alex. It was unfair for any child to be brought into a family that weren't all committed to him 100%, and we couldn't be, that was just the truth. We also didn't have enough money, enough space, and frankly the time needed to do this right. Owning our own business means long hours, and I would not go into this unless I could give this child everything they needed, having a frazzled, emotional mom would have been the last thing he needed.

I felt like adopting was something my heart desired, but my mind knew better. And I also felt like we had been drug through a war once before, and I was terrified to bring any chance of that same hurt to my family again. I let go of the dream of adopting, but my heart was still in RR. I could be, as they said, a cheerleader on the sidelines. I could live with that.

Aleksa eventually was adopted by a wonderful family that could meet his needs much better than we could have. His smiling face on their blog was precious to me, he was home. It still hurt a little, I had imagined him in my house, in my arms. But he was alive, and he was thriving, and his new mom loved him so much, and the decision to bring him home was one they all made, together. I felt a sense of relief, but also an overwhelming sense of being so useless and ineffective for these children. I wondered if my friends and family were sick of me shoving pictures in their faces, asking for just one more dollar.

When the children Iknew by name started to die, I started to fall apart. I took it personally, I couldn't save them, and it was eating me alive. It was incredibly egotistical to think *I* could. I was just a tiny piece of a huge movement to bring these kids home. I would never be "Mom" to any of them, I would never have enough money to make any kind of big difference. My heart was being broken. I began to pull back, and to just go to the sites of the families who had brought children home already, to celebrate the ones that were saved, Ava, Alex, Micah and Emma, Evan, Xander & Grifyn, Owen, Vitya, Katie and David, beautiful Caleb. And I tried to forget those haunting faces left behind. This year's Christmas angel program went off without a word from me. I saw the requests for money on the blogs, "another one". I chose to look away, to spare myself that kind of agony. I didn't want to see any more children die. I didn't want to see another adoption fall through at the last minute because some overblown ego somewhere decided to play God with a child's life. I wanted to protect myself. It was one of the most selfish things I have ever done.

The little girl pictured above died this week. Her name was Margarita, and she died waiting for a family to come for her. Through RR, I had seen how many people had desperately wanted her, but been unable to get her because of money. I thought what a wonderful sister she would make for Ciarra, but she never felt like "mine". She did feel like "one of ours" though. I saw her precious face and knew her days were numbered, but I always believed she would come home, because so many people wanted to make her theirs. She would come home like the others before her, be doted on and adored, taught what it means to be loved unconditionally. Soon, we would see her dancing in her tutu with her sisters, cradled by her new daddy, loved...home.

In the months of me turning my back because it was too painful to look, she died, alone, never knowing the love of a family. I am ashamed of myself in a way you cannot understand unless you have been here, too. Have you? Have you gotten so you are afraid to look, afraid to love? Have you allowed yourself to think "another one" and move on with your day? Do you, as I do, feel a great sense of selfishness, that maybe if you had kept trying, she would have had a chance? We CANNOT save every child. We will always have to face losing some of them. But that can't stop us from saving some of them.

In the time when I was too busy worrying about my own emotional comfort level, Katerina died. she shared Ciarra's crazy eyebrows, clear skin, and genetic makeup. She had a chance, but she needed people like me (and you?) to keep caring. Katerina, nobody's daughter, died this week, alone. Where was I when she passed into her Father's arms? Where were you?

It hurts, and it is going to keep on hurting, to care about these children. andrea runs Reece's rainbow, and she lives with it every day. More importantly, the children live with it every day. They don't have the option of turning away. They are dying hungry and unloved, sick and needing us. Maybe we cannot save them all. But we can try. Or we can live with the face we see in the mirror every day.

TODAY, choose to do something. Don't turn away. They need us.

reposting

2009-02-11T09:20:00.000-05:00

I have been asked by several different people HOW we got Ciarra reading. I thought it might be nice to have things in one place, to refer to as needed. So here goes!!

Nouns & Sounds was one of the earliest CD Rom games we used. It is a FANTASTIC and easily modified program for teaching kids about the world around them. It has the child match the SOUND of something to the onject that makes the sound. You can have a very few objects to choose from, or LOTS of different choices. This program was hands down hugely responsible for teaching Ciarra the NAMES of things.

you can request a demo CD to see if you like it.

STORY BOXES make reading interactive. An old shoebox with various items that are illustarted in the story can help make the story come alive for visual learners:
A story box is a way for young children to experience a story. When selecting a story for you child, choose one that is simple and tells about familiar objects and concepts. Collect corresponding items in a box or bag. As you read the story to your child, allow him/her to hold the item. Examples:

Chicka, Chicka, Boom, Boom, by Bill Martin Jr. and John Archambault, National Braille Press, Simon & Schuster, (Print/Braille)
Contents Magnetic Alphabet, Drum, Coconut

Jennifer's Messes, by Suzette Wright, American Printing House for the Blind.
Contents: Cheerios, Barrettes, (2) Coins, Comb, Pencil, Keys, Doll, Pretzel

Giggiy-Wiggly, Snickety Snick, by R. Supraner, Parents' Magazine Press.
Contents Hard, Soft, Bumpy, Smooth, Tickly, Sharp, Sticky, Stretch, Cold, Hot, Crunchy, Squishy, Fluffy, Curly, Straight.

Good Night, Everyone! By H. Ziefert, Little, Brown & Co.
Contents Stuffed Animals (Bear, Monkey, Mouse, Lamb).

Hello Kitty's Bedtime Search, by S. Bright, Random House.
Contents Socks, Necklace, Tee Shirt, Blanket, Teddy Bear.

If You Give A Mouse A Cookie, By Laura Joffe Numeroff, Harper & Row.
Contents Cookie, Cup, Milk Container, Straw, Mirror, Scissors, Dustbroom, Sponge, Blanket, Pillow, Crayons, Tape, Paper

Suppertime with Frieda Fuzzypaws, by Cyndy Skekeus.
Contents Cookies, Plate, Cup, Pasta, Paper Crayon, Paper Cookie.

Teddy And The Mice, by Brain Ax, Terry's Friend's Series (Board Book).
Contents: Small Wagon or Dump Truck, Blocks, Mice, Nuts, Teddy Bear

The Foot Book, by Dr. Seuss, Random House.
Contents Slippers, Towels, Cotton Balls, Toy Clown, Big Shoes/Small Shoes.

The Gingerbread Man, A Pudgy Pals Board Book.
Contents Cookie, Cookie Cutter (Tin), Stuffed Fox, Cat, Cow

The Indoor Noisy Book, by M. W. Brown, Harper & Row.
Contents Household Objects That Make Sound: Broom, Spoons Clinking, Door Slamming, Eating Raw Carrots or Celery, Slurping Pudding, Footsteps, Telephone Ringing.

The Jacket I Wear In The Snow, by Shirely Nellzel, Scholastic Press.
Contents Red Wool Hat and Scarf, Zippered Jacket, Sweater, Boots, Long Underwear, Socks, Jeans.

The Little Engine That Could, by Watty Piper, Platt & Munk Publishers.
Contents Dolls, Balls, Toy Engine, Sailboats, Toy Animals, Clown

The Longest Noodle, by Suzette Wright, American Printing House for the Blind.
Contents Noodle, Fork, Shoelace, Jump Rope, Ribbon, Yarn.

The Runaway Bunny, by Margaret Wise Brown, Harper & Row.
Contents Toy Fish, Rock, Gardening Tools, Watering Can, Toy Bird, Sailboat, StuffedBunny, Carrot.

The Saucepan Game, by J. Ormerod., Lee & Shepard Books.
Contents Pan with a Lid, Stuffed Toy Cat.

The Sweet Smells of Christmas, by Patricia Scarry, (Scratch and sniff). Golden Press
Contents Cinnamon, Pine Cone, Candy Cane, Spirit of Peppermint, Ginger, Cocoa

The Three Little Kittens, by Kate Gleeson, Golden Books.
Contents (3) Stuffed Kittens, (3) Small Pie Tins, Soap, Mittens; Optional Clothes Line & Clips.

The Three Little Pigs, Golden Sound Story, Golden Press.
Contents Brick, Sticks, Hammer, Hat, Straw.

Underwear, by Mary Elise Monsell, National Braille Press, (Print/Braille)
Contents Different Kinds of Underwear, Slippers.

Scholastic offers some FANTASTIC learning programs based on Clifford the Big Red Dog. Unlike many other kids software, the Clifford CD Roms dont skip around, they work through word families, one by one, until they are really learned. They are very short, engaging activities, and they are VERY user-friendly.

Clifford Phonics CD rom and book set is a GREAT resource!

CLIFFORD BIG DOG MUSICAL MEMORY GAMES CD-ROM
can be found on EBAY very often

Clifford the Big Red Dog Thinking Adventures is also an Ebay find.

Next, we swear by Cricksofts line of products, expecially Clicker 5 and Clicker paint. They utilize many different kinds of graphics programs such as PECS, etc to help children write using symbols. As the child grows, the program adjusts, less symbols, more words, visual and verbal prompts, spell checking, etc.

Adding Clicker paint to the product enhances it tenfold. Both programs work in concert with the FREE grids at learninggrids.com , where you can download and use thousands of pre-made grids that teach VERY specific topics. Your child can write book reports on virtually any subject, use the word processor to talk for them, insert their own drawings into reports and stories, or even capture JPG or BMP files off the home computer to use in their stories.

well, there are some of the suggestions I give when asked. More than anything, though, READ yourself. Show your child that reading is fun. Enjoy it, show them that. Make books available at all times, and dont worry about mess. Just live in the moment.

Aislynn's First Birthday

2009-02-07T12:21:00.001-05:00

Maine boy with DS scores BIG

2009-02-05T08:35:00.000-05:00

na na na na

2009-02-03T15:42:00.004-05:00

Two weeks ago today a bunch of liberal Democrats gleefully sang this song to George W. Bush at Obama's inauguration, a disgraceful display of bad manners and gloating.

Heh, this one's for you Tom Daschle:

Tom Daschle has withdrawn his nomination for HHS secretary.

Na Na Na....Goodbye.

Hat Tip http://2conservativewomen.blogspot.com/

and here I thought I had thought of everything...

2009-02-02T08:24:00.002-05:00

We have a wonderful Pediatrician who has seen Ciarra since before birth. He was there when we got the news she might have DS, there when we decided not to test further, and there when she was born. I treasure his advice, his groundedness, even his humorous put downs (we go back and forth). But he is a Pediatrician, and Ciarra is not going to be little forever. Already, we deal with "big kid" issues, puberty, periods, even boobs. I thought I had thought of everything. But this, I haven't thought of!

The incidence of adult disabled patients staying with their pediatricians long after their 18th birthday is one of many issues raised in a report released today by The Arc of Massachusetts, an advocacy group for people with intellectual and developmental disabilities.

The study, "Left Out in the Cold: Health Care Experiences of Adults with Intellectual and Developmental Disabilities in Massachusetts," found that many disabled adults face longer waits than most people finding good internists, and that prevents them from get ting the best care for common adult conditions such as hypertension, heart disease, or thyroid disorders.

The report found that, among other reasons, many internists avoid disabled patients because of uneasiness with them.

Our Ped has seen my oldest daughter a few times, past 18. Stuff like sore throats, turned ankles, etc. We have been talking about needing to get her moved over to our Primary Care doc, my doc, but it had never occurred to me that while it might be easy for Kristin, it may not be so easy for Ciarra, when the time comes.

We still have a long time before we will need to start planning that move, but knowing that it is on the horizon gives me time to look around, make a studied decision, and prepare for possible trouble before we really need a doc that will see an adult with Down syndrome. She loves the Doctor, and has no real issues with going, but the future will hold progressively more difficult tests etc for her, and it is good to think ahead and try to be prepared.

my son is the little kid magnet

2009-02-01T09:42:00.001-05:00

it never fails, when we are out, if little kids are around, they are on or near him.

Whats in the stimulus that scares me most

2009-02-01T08:59:00.000-05:00

American Recovery and Reinvestment Act of 2009

The bill’s health rules will affect “every individual in the United States” (445, 454, 479). Your medical treatments will be tracked electronically by a federal system. Having electronic medical records at your fingertips, easily transferred to a hospital, is beneficial. It will help avoid duplicate tests and errors.

But the bill goes further. One new bureaucracy, the National Coordinator of Health Information Technology, will monitor treatments to make sure your doctor is doing what the federal government deems appropriate and cost effective. The goal is to reduce costs and “guide” your doctor’s decisions (442, 446). These provisions in the stimulus bill are virtually identical to what Daschle prescribed in his 2008 book, “Critical: What We Can Do About the Health-Care Crisis.” According to Daschle, doctors have to give up autonomy and “learn to operate less like solo practitioners.”

Keeping doctors informed of the newest medical findings is important, but enforcing uniformity goes too far.

New Penalties

Hospitals and doctors that are not “meaningful users” of the new system will face penalties. “Meaningful user” isn’t defined in the bill. That will be left to the HHS secretary, who will be empowered to impose “more stringent measures of meaningful use over time” (511, 518, 540-541)

What penalties will deter your doctor from going beyond the electronically delivered protocols when your condition is atypical or you need an experimental treatment? The vagueness is intentional. In his book, Daschle proposed an appointed body with vast powers to make the “tough” decisions elected politicians won’t make.

One quote from the book that is very telling:

"Daschle's solution lies in the Federal Reserve Board, which has overseen the equally complicated financial system with great success."

Commentary by Betsy McCaughey
http://www.bloomberg.com/apps/news?pid=20601039&refer=columnist_mccaughey&sid=aLzfDxfbwhzs

Critical: What We Can Do About the Health-Care Crisis by Tom Daschle
lo and behold, Senator B0 endorsed this book, saying:

The american healthcare system is in crisis,
and workable solutions have been blocked for years by deeply entrenched ideological divisions. Sen. daschle brings fresh thinkin to this problem, and his Federal Reserve for Health concept holds great promise for bridging this intellectual chasm, and, at long last, giving this nation the health car that it deserves."

Imagine the implications for those of us raising children society has already signed off on as "less-than"? When will treatments be withheld so "nature can take its course"? Will heart surgery for the mentally retarded not be "cost-effective" enough?

"Meaningful use" feels an awful lot like "Life unworthy of life", to me.

"A lack of resources caused Germany and other countries to favor those who would recover versus those who would need constant care."

Propaganda slide featuring a chart produced by the Reich Propaganda Office showing that in 1936 the total cost of caring for 880,000 people ill with hereditary disease was 1200 million Reichsmarks, which was almost double the 713 million RM spent on the administration of the national, state, and local government.

Date: 1936
Locale: Germany
Credit: USHMM, courtesy of Roland Klemig
Copyright: USHMM

In 1920, the concept of living beings not worthy of the life they embodied gained impetus with a tract published by two university professors, Karl Binding and Alfred Hoche. Permission for the Destruction of Life Unworthy of Life articulated key implications for people with disabilities. Binding and Hoche called for the killing of people with disabilities, whom they viewed as "incurable idiots" having no will or sense of living. Killing them, therefore, was hardly involuntary euthanasia, that is, the imposition of others' will upon them. This shifted the burden of human existence from simply being alive to requiring an explicit justification for living.

For Binding and Hoche, therefore, the right to live was to be earned, not assumed. One earned the right to live by being a useful economic contributor to society. Chief among the individuals they saw as being useless were those who seemed to have little or no human feeling, or in their terms, "empty human husks" whose only societal function was the consuming of precious resources while contributing nothing to society in return. In Binding and Hoche's terms, they were "useless eaters" whose "ballast lives" could be tossed overboard to better balance the economic ship of state.

Binding and Hoche's polemic was furiously debated across Germany. One strident critic of the Binding and Hoche position was Weald Meltzer, the director of an asylum in Saxony, who held that many of his charges did indeed have the ability to enjoy life inasmuch as their disabilities would allow. In an attempt to support his belief, Meltzer surveyed the parents of his patients to ascertain their perceptions of disability and euthanasia.

To Meltzer's astonishment, the survey results showed a widely held contradiction among the parents that although they had strong emotional ties to their children, they simultaneously expressed, with varying degrees of qualification, a "positive" attitude toward killing them. The results were a harbinger of future public and official perceptions and actions toward people with disabilities. Meltzer's survey was later used as a major rationale for the killing of thousands of people with disabilities under the National Socialists, whose long-held social perceptions of difference coupled with official state prejudice delineated a series of genocidal markers that doomed significant numbers of people with disabilities during the Nazi era.

Propaganda slide featuring three portraits of mentally ill patients. The caption reads, "Idiots!"

Date: Circa 1934
Locale: Germany
Credit: USHMM, courtesy of Marion Davy
Copyright: USHMM

...by the end of World War I, an implicit but palpable public perception of higher economic worth was attached to people without disabilities, and lesser worth was attributed to people with disabilities. Later, the economic worth of human life under the Nazis proved a key distinction for creating and sanctioning genocide against people with disabilities.

ask questions, research, do not just swallow this mess whole. The road to socialism is hidden in the technical language.

ohhhhhhhhhhhh boyyyyyyyyyyyy

2009-01-31T18:49:00.002-05:00

came home to find BIG sister had dolled up LITTLE sister....mascara!! ACK! She is too little to look this BIG.

Maybe I'm crazy, but

2009-01-25T15:50:00.004-05:00

I was lying in bed last night thinking about today being Alex's birthday. He would have been 12, and truth be told,I cant even imagine anymore what he would look like. Twelve is so far from 3. I was thinking about his last day, I had read the report that he was home alone with the man who killed him while the mans wife went to the store to get stuff for burgers. Alex never met a burger he didnt love. :) He never got that burger. That boy loved food so much, and in this mommas mind, he should have his burger.

So today I went and got his Birthday ballon, and a little red truck like the one he so treasured, and a burger. And I went to his tree and left it. No, Alex wont ever really have that burger. But maybe he will know that his Mom really loved him, and wished he had had the burger, and gone to Disneyworld, and grown into the fine young man 12 would have brought.

I cant change the past, but I can honor his memory today. Cheeseburger, just ketchup, no pickles...just like you liked it, boy. Happy Birthday

Sometimes Thou may'st walk in Groves,
which being full of Majestie will much advance the Soul.
- Thomas Vaughan, Anima Magica Abscondita

signs of the times

2009-01-22T20:37:00.004-05:00

Ciarra says:

"Michelle, this bra is wicked awesome. But I would like it to be in hot pink. Can you get that for me, please?"

Her: "Michelle, please dont tell Julianna that I love Barney. Julianna doesnt like Barney. But she likes Barbie Diamond Castle and Hannah Montana. Its ok if I like Barbie Diamond Castle and Hannah Montana. It is NOT ok if I like Barney. Don tell her,ok Michelle?"

(I tell her it is ok that she still likes Barney, that she should not be afraid to be who she is.)

HER: "I do. Just dont tell her that, ok?"

Her: Mom, these skates are broken.
ME: They arent broken, its just hard to balance on skates.

Her: Well, then my feet are broken, cause this is not working.

Her: "Michelle, when you was a little girl, did you like Barney?"
ME: When I was a little girl, Barney wasnt born yet.
Her: "Wow, you must be really REALLY old."

My little, BIG girl.

<

The Waiting List

2009-01-13T15:02:00.002-05:00

(there are seveal parts, keep watching.)

Hudson's Heroes!!

2009-01-10T10:32:00.002-05:00

My young friend Alex is raising money for a very worthy cause, Special Olympics!!

The MSP Polar Bear Plunge benefits Special Olympics Maryland and the 10,000 children and adults with intellectual disabilities who experience the life-changing benefits of participating in the organization's year-round training and competition programs — all at no cost to themselves or their families.

Join me in my efforts to support Special Olympics - Maryland!

This will be Alex and his dad Chip's third year jumping into freezing water! Alex is an awesome 17 yr old young man who happens to have Down syndrome. He is a go-getter, a charmer, and even though he is too grownup for me to call him cute, he just IS. Adorable even. If you can help in any way, please chip in a few bucks, they take PayPal.

Good luck Alex!!

Friendship

2009-01-08T08:04:00.002-05:00

“A friend is someone who lets you have total freedom to be yourself.”

~Jim Morrison

neurons and synapses and cells...oh my

2009-01-06T10:09:00.002-05:00

http://www.pubinfo.vcu.edu/secretsofthesequence/

fascinating stuff. Someday, DS will be cured. Will that be a good thing or a bad thing? I guess it depends on who you ask.

updates on life

2009-01-06T09:18:00.002-05:00

Well, regular readers know that we made the decision ( a HARD one!) to have Ciarra spend afternoons out of the regular classroom. We started this just before Christmas break, and yesterday was her first day back. She is a MUCH happier little girl now. Huge sigh of relief, I think we did the right thing.

Still, it is hard to let go of something I fought so long and hard for. I believe in Inclusion, theoretically. I think that it is probably the best thing for our kids with DS...if the schools are set up for it to work. Don't get me wrong, our school truly bent over backwards to make it work. But Ciarra was the first to really have a significant disability and be fully included, every step was like re-inventing the wheel. No one had any experience with modifying curriculum, there is no "Inclusion Specialist" as there is in bigger schools. We all gave it our best shot, but for Ciarra, it was incredibly stressful.

Easy for me to believe in Inclusion, but she is the one who had to go in every day and struggle through it, with people who were also struggling through it, all doing their best to make it work but with NO parameters and no previous experience of any sort. 4th grade is not the time for Mom to be hanging out, helping pave the way, it is a time for independence. Independence is hard to come by when you are in a classroom with 22 other kids who generally "get" things much more easily than you do.

I imagine it had to be really tough on her to have to work so hard to get things right, only to find the other kids had already moved on to the next subject. Dont get me wrong, Ciarra is academically doing very well. She is currently working on an Abe Lincoln project she is really into. She loves math, she loves to read. But for her, every subject requires that much more concentration, that much more time, thought, and desire to get through. To always be trying to keep up is hard, never getting a breath or being able to be first with an answer. Like her momma, my daughter likes to be first, fastest, smart enough. She is incredibly competitive. Who doesnt want to be right more often than they are wrong? It was destroying her will, and killing her desire to even go to school.

So for today, this works. I am still wrestling the demons of Inclusion in my mind, still wishing it might have worked better. But in the end, it is Ciarra who matters most. Her happiness is so much more important than her academics. Hands down, if I had to choose, it would be a happy and well-adjusted child over "fully Included"...any day of the week.

Letting go of that has been very different than I expected. I expected to feel guilty, to feel beaten, to be very sad. It was letting go of normal, again. What I have discovered is that it has been very freeing. I love to see her smile, as she tells me about her day. I have asked her at least ten times if she wants to go back to the other classroom, or if she likes the new schedule. She doesnt just like it, she loves it. She is excited to go to school, she loves to tell me about her days. She wants to work hard, she is happy. That is all I need to know to be sure this was the best decision...for her.

Christmas was saved!

2008-12-26T10:18:00.002-05:00

I wanted to update anyone who is reading. The family below that we wanted to raise some funds for ended up with a HUGE turnout. Not only did Christmas get covered, but a few extra bucks for some bigtime bills did, too. THANK YOU to all who dug deep and managed to make it a priority to spare a little (or a lot) extra for someone else at this overwhelming but beautiful time of year. We raised almost a thousand dollars!! Thanks especially to Renee G, your generosity and kindness at the drop of a hat is amazing, and I am forever indebted.

Can you spare 5 dollars?

2008-12-19T08:57:00.004-05:00

I have just discovered a fellow blogger is going to REALLY go without for Christmas. Young kids at home, dh just got laid off, the week before Christmas. He works in the auto industry, which we all know is taking a HUGE hit right now. I found out quite by accident, and she didnt ever say a word asking for help. She just let slip something that clued me in, and a few questions later I knew this was going to be a really really hard Christmas unless some elves jumped in. I know a lot of people are strapped this time of year. I know we are. But I can find $5 bucks. You will have to trust me on this one, I cannot and would not reveal names, and you likely wont ever know what came about in regards to their Christmas. I can blog a tiny bit, but there wont be much on details. If you trust me, if you have faith in me that I know real need when I see it, would you please consider making a small contribution to a VERY worthy cause? Good people, these folks. First in line to help anyone they ever hear is in need. Now they are struggling, quietly. And their babies are expecting Santa, too. Please help?

Renee, at Life With My Special K's is going to be the lead Elf here. She will handle any donations via paypal. She is good people, too. Go to https://www.paypal.com/us/ and click on SEND MONEY. Put in an amount...ANY amount you can do...and enter her email addy as recipient:
CAmommy2KJ@aol.com

She will take it from there, and do the shopping, then go Elf this very deserving family.

Please help. and please, spread the word. I know we can do this folks. I still believe in Christmas.

a very sad goodbye

2008-12-18T22:25:00.002-05:00

when I was a little girl, I longed for a Grandma. Not just any Grandma, she had to be funny, and playful. She had to smile a lot, and she had to love me very much. We would bake cookies and play games like Hide and Seek. She would be fun, witty, and beautiful. My Mom's mom was alive, but she was not very involved with us, she had 15 kids and by the time her youngest child's daughter came along, there wasnt much left. She gave me some neat memories, for sure. But she wasnt fun, funny, or particularly interested in me. My dad's mom was so wrapped up in her own family, my parents were divorced and we rarely saw them after about age 5. I remember being very proud when I went for a visit once and my picture was hanging in a frame in her kitchen. I felt really special, I mattered. But she never baked cookies or played games. I felt like I was missing out. My mom remarried, and his Mom was my Grandma. But she was never MY Grandma, really. Her husband was my Grandpa, he laughed and played with us, took us to amusement parks. But they lived far away, and she wasnt really Grandma material, baking cookies would have meant flour on her expensive pantsuits, and kids were messy and noisy. I loved them, those Grandmas of mine, but they werent like the Grandmas in the story books. I grew up not ever having that connection, and even as an adult, I craved it.
My Mom remarried when I was well into my own life. The man she married is gregarious, funny, charming, and so decent a man that I can barely believe my luck. I love him, and have told him many a time I wish he was my real Dad. I dont call him Dad, but I wish I was brave enough to. He tells me he loves me often, and we chat on the phone easily, with no self consciousness or discomfort. I love him dearly, and thank God I have him. I always wanted a Daddy too, and he is the best thing I could have gotten in that department.
A few weeks ago, we visited Florida, and spent Thanksgiving with them. My brother and his family drove down from Georgia, and we all crammed into their little retirement community home. It was very nice, MUCH bigger than expected, and full of good food, laughter, and family. Thanksgiving Day I finally met Vern's Mom. It was love at first sight. She was funny, charming, interested in everything I had to say, and a delightful lady all around. It sounds silly to say that I loved her. I know people say it all the time...." OH I LOVE her, shes so cool." But I felt a genuine love for this woman, she raised my Stepdad, after all. The connection between us was automatic. We sat and giggled and laughed and talked for an hour, she asking me questions and checking out my Ipod videos of the kids. The next day, she went shopping with us at a huge mall. We went into stores together, walked together, sat on benches outside together and laughed for no reason.She felt so real to me, so mine. It is hard to explain, but I felt like Finally, I got my Grandma. I like to think it was kind of mutual. I think she and I are a lot alike, same crazy sense of humor, same love of gadgets, and the same love for our families. We dropped her off at home that night, and we hugged goodbye. We would be leaving the next day, and I told her how nice it was to finally meet her, and how much fun I had had with her. I didnt tell her that she had already stolen my heart, that I felt a hole filled up with her. She isnt my blood, but she couldnt have felt more real to me if she was.
Vern was on his way to see his folks this afternoon when his Dad called, and said "Come now." He walked through the door to see EMTs doing CPR on his beloved mother. Massive heart attack, and she was gone. She didnt suffer, I guess. It happened very quickly. And just as fast as it happened, just as fast as her heart stopped beating, I lost the Grandma I had longed for for my whole life. And I am sad. Sadder than I would have ever imagined. I never really "knew" her. I never had the privelege of baking cookies, or watching her bustle around the kitchen. But we laughed, and we had a connection that was instantaneous and deep. My Step Dad told me she had mentioned me many times since that day, how much she liked me, how funny I was, and smart. Like a genuine Grandma, she was bragging about me to her friends.
I feel like I lost something too huge to name today. And yet, I feel deeply honored to have known her, to have known her kindness, enjoyed her laughter. I got my Grandma, it wasnt for very long at all. But I got her. And I will treasure that always. Rest in peace, Grandma Record. You were a treasure.

awwwwwwwwww! Thanks, Ruby's Mom!

2008-12-18T16:49:00.002-05:00

I just got home and found I had been nominated for an award. someone thinks my blog is FABULOUS....why THANK YOU!!! I peeked at yours, too, and omg, that is one CAYUUUUTE baby. Ruby's Mommy, who is new to the DS world, nominated me. Very very sweet. Go check out her blog, give her a few words of encouragement...and by the way, did I mention how CUTE lil Miss Ruby is? Yep, THAT cute. :)

Now I have to pick 5 others to send it to:

Shea has a blog that I love to read. It is basically a love letter to her son, Oskar, whom she has never met...yet. Her words move me to tears. She hopes to bring him home soon. He is beautiful...see for yourself:

See, the thing is, Oskar is my child. Maybe he is not my birth child, but he is mine. So as more time passes and the more real to me he gets, the more I worry. Like every mother I want the best for my children, even if that means I go without. So I worry about whether he is loved, held, told he is handsome and smart. I worry if he has a tummy ache. I wonder of someone cuddles him when he is sick. In the midst of all this worry, I feel totallly helpless. It's the same as when someone else looks after your kids. You know that NO ONE is going to do it the way you have. That being said, I am utterly confident that they take good care of Oskar. So with every delay, I have to step back and trust that he is getting what he deserves and needs. My mind tells me he is and that he is very fortunate to live in the country he does, reside in the orphanage he does, and have such caring workers to look after him. However, my heart knows he needs his mommy. So each delay makes me feel like I am loosing control(not a good thing for a control freak). I think I deserve to feel a little bonkers at times. This whole hague thing is enough to make you loose your mind. It does not help that when I do anything I jump in with my whole heart and soul. If I love I do it passionately and with everything I have. I refuse to be afraid, but worry sneaks in when I least expect it. I'd rather do that afterward when I have something to be afraid of. I just want him home. I want him to know that I HAVE LOOKED ALL MY LIFE FOR HIM.

Beautiful, huh?

Ok, how bout number 2 is Charrissa? She is a funny, amazing, AWESOME Mommy of a handful of little ones...and she does it with STYLE. She adopted one of the apples of my eye not very long ago. You can read all about them over there, Miss Ava is just BLOSSOMING. Sigh...its a love story, Im a sap. ;)

Number 3-Shelley. Ok, ok, another adoption blog. Adoption might be why I found them, but it isnt why I keep reading. SOMEHOW she takes it all in stride, young kids, Army husband, several moves, medical stuff. Shes awesome, dont take my word for it...go read.

Number 4- Meredith

I had the absolute pleasure to meet she and her REALLY BEAUTIFUL family recently. Wow. 4 BABIES...little ones...and she makes it look easy. Her hubby is a sweetheart, her kids are angels..honest...and oh yeah...2 of them are adopted. But I knew her before the adoption, so this one doesnt count. :)

Number 5 is Adrienne. She doesnt really know me. But I can honestly say I think of her at least once a day. She is an AWESOME Mommy to a precious little guy named Owen. Her story will make you laugh and cry and everything in between. Seeing Owen grow and change over the last yr or so has touched me deeply. Lucky, lucky boy...and lucky parents too. If I could give one miracle for Christmas, it would be to Adrienne, and I bet she knows what it would be, You will too, go read....

And I have to list 5 Fab. things:

toradol-its a pain med. Im currently on it, spent the day in teh ER, kidney stones...yippee.

my family- I LOVE these people. I even like them. And it just keeps getting better.

Christmas-isnt Christmas FUN? I love this time of year. I just got back from sorting gifts for a Christmas is for Kids program we do through the school every year...some little ones are going to have a GREAT Christmas, and I get to be a part of that. How cool is that?

New friends- Jen & Billy. What would I have done if you guys hadnt wandered into my life? To say I am grateful is an understatement. Where have you been all my life, Jen? Love ya.

Down syndrome-the people this syndrome has brought into my life NEVER cease to amaze me, touch me, make me see things more deeply. I am so grateful to have had my eyes pried open.

Tree Farm 08

2008-12-15T12:04:00.000-05:00

Aislynn's First Steps

2008-12-15T10:22:00.001-05:00

Make photo slide shows at www.OneTrueMedia.com

Let There Be Peace on Earth

2008-12-11T08:13:00.001-05:00

Florida 08-Ciarra

2008-12-10T10:37:00.001-05:00

choices

2008-12-09T17:50:00.005-05:00

Ciarra is in 4th grade this year, and truth be told, it is hard. Hard on us, hard on her. Just hard. Academically, she is doing pretty well. She is not having any real behavior issues at all, and for all intents and purposes, she is doing "ok". But something is sliding away from us, from her, and it is worrying me. Her class size this year is MUCH bigger. The teacher really and genuinely likes her, but doesnt seem to come equipped with that THING that makes a kid like Ciarra fit into a classroom easily. She wants to, but she just seems not to have that magic that last years teacher had...and did I mention she has 10 more kids than last years teacher had?

Something about 4th grade is tough. We fought so hard for inclusion, and in many ways we still believe it is the best thing for our daughter. But at the same time, we want HER to have what SHE needs, too. This isnt about me, or ideaology, not about some belief in a place that is :the best" for a kid with Down syndrome. It is about Ciarra, her needs, her wishes, her heart. What she needs to feel right about herself in the world she goes off to every day without me. For the first time ever, I believe full inclusion just isnt the best fit...right now. Who knows what tomorrow will bring, what teachers, what settings, what changes in Ciarra will come to be? Right now, today, as hard as it is, I feel like the best choice for this blossoming little girl of mine is to be in a place that does not stress her so much. I want her to love school. Not tolerate it, not suffer through it. I want her to have a place where she can be successful, where she can raise her hand and be sure she is right, where the people around her know that even the rambling answer she might give is valuable. I have decided to ask for some time in the special education room. We have a new teacher, a man who seems intuitively to know what she needs. He has initiated touch math, with great results...something I asked for for years...something familiar, the same math I learned on. Ciarra likes him, a lot. She likes the classroom. She likes the other kids. There are a variety of kids in there, one other child with DS, one with high functioning autism, one lesser so. A few with just general learning challenges, but all of them delightful, wonderful kids. I feel like on the qwest for "Inclusion" sometimes, we are led to believe that having our precious children in a classroom where they might...GASP!...model BEHAVIORS...of other kids that are less than desirable...is a bad thing, something to avoid at all costs. And yet, in my heart I know the children in that room are no scarier than she herself is. They have learning disabilities, they have beautiful smiles. And their behaviors as a whole cant be any scarier than those of other, typical, 4th graders. (Said from the perspective of a mommy who had to explain why the middle finger her former best friend showed her is a BIG no-no.)

Ciarra is growing up. She has a right to the best place for her, to be happy in a place where she is appreciated just as she is, and not because she can keep up. Keeping up is killing the spirit that she has. I saw some of that beautiful spirit last week, on vaction last week, when she danced in dressup clothes, pretending to hold the hand of her Prince. It was short-lived, too short. That beauty and uninhibited charm she has is shackled by her desire to be a big kid. It is as though her heart and her mind are at war, and she is learning to put away all of those things that make her smile. She wants so badly to please, but after being wrong a few times, she no longer raises her hand.

She is caught in such a mixed up world, so innocent and yet at the same time so grownup. It struck me last week, as we hurtled from Curious George to one of the world's biggest rollercoasters, from tea parties with her favorite cousin to starting her period on vacation. She is in so many places right now, emotionally, physically, developmentally. What she needs most is the security to be her in a world that is changing fast. I see her fighting back the innocense, trying to be big. That hurts to see. I do not want her to give up the best parts of herself to fit in, to be accepted by the crowd. The kids love her, will they love her when she is not there amongst them everyday? I think so. I want her to succeed, and this is the best decision I can make for her right now. I feel like saying this more or less publicly means I am letting others down. Some people look to us as sort of the trail blazers, and I have always been so strong a supporter for Inclusion. I dont want people to think it cant work for them, or that I have disappointed them, or given up. I am doing what I think is best for MY child, and I hope they will do whats best for theirs. But time and circumstances change, kids change, teachers change, and life changes. I have to keep evaluating, see what works, feel it out for awhile, and make the best decisions I can make..for her. The ego part of me would like to see Ciarra be a superstar in school, get all the answers right, wow them with her intelligence..and she does in some ways. But it is taking a toll on her personality and her heart, and more than I want anything in this world, I want her to be happy. I want to keep her innocense intact, to let her talk about Santa Clause and Barney and Curious George if she wants to. I want her to bake cookies and never know she is learning about measuring. I want her to laugh more than she cries, to succeed more than she fails, and to enjoy this life that is hers, not mine. Tomorrow we meet with the teachers, and we begin the process of cutting down reg ed time. And I feel like this is the right thing for her. I pray it is.

Dear Alex

2008-11-21T09:31:00.003-05:00

I am thinking of you today. In my mind, you are still 3, tiny hands and feet, impish smile. The last time I saw you, your beautiful hair was all shaved off, but in my mind I see the blonde curls. In my mind, I guess, you are still three. It is hard to believe that you would be turning 12 soon. I try to imagine what you would be like, but my mind is stuck, you will be forever 3, I guess.
Your brother is 13 already, big and strong. He plays football, and I often wonder if you would have joined him out there, though I doubt it. I imagine you as an artist, or curled up under the covers reading Harry Potter with a flashlight. Jesse doesn't talk about you much anymore. He remembers driving home from your funeral and asking me where you were, if you were with God. I can still hear his little voice, and see his stubby finger pointing at the sky, "I see Alex and his gang on that cloud, Mom." I ache for him, because I see his desire for a little brother in every little boy that comes through our lives.
I know with all of me that you and Ciarra would still be close. She is big now, this little sprite of a girl you called "my baby". She is ten. Alex, do you know she still talks about you all the time? She asked me the other day what your favorite song was. I laugh and cry at the same time, remembering you screaming out the words to "Who Let The Dogs Out". That is your song, you are stuck with it, buddy. Ciarra seems to have a connection with you that will never break, and I wonder how on Earth she can still remember. She was only 2 when you left us. But she remembers, there is no doubt about it.
Kristin talks about you a lot more now. She has been begging us to let her get a tattoo on her wrist. She wants it to be your name and your dates or birth and death. I worry that having the pain of you so close will be hard on her. I suppose it is no harder than what she already feels. She was old enough to remember it all, and to feel guilt and grief in the way only preteens can. I know she understands, but I also know that your loss changed her forever. She is going to be 20 soon. I imagine she would do the same with you she does with Jesse, harrass and laugh, tease and love with everything in her. They have discovered they like each other, finally, and I know you would be right in the middle of that, complaining and laughing all at once.
Andrea is a mother now. She has a beautiful baby girl. She talks about you often, too. At Halloween we laughed and laughed remembering you going to the patio door when you heard a knock one Halloween when you were small, and screaming your silly head off when she walked in in an alien costume. You were so scared. I have never seen anyone so scared. Sorry we laughed, but I am glad we have that memory. Andrea loves you, and I know she will read this, and Andrea..he loved you too kid. Rob and Wendy have a little boy too now, Hunter. They moved away, they live in Florida now. We will get to see them next week, we are going to visit Grammy and Papa. Grammy made me a photo quilt, and I was so happy to see that you were not left off it. So many people forget to include you, or they dont want to mention it. I am always happy to see your little face peeking out at me from it. I may have 3 kids now, but in my heart, the answer is always "I have 4". You are not forgotten, baby, you never will be.
Daddy doesnt talk about you much, not ever, really. A few months ago, I asked him why, and he started to cry. That was answer enough.
Alex, I visit your tree a couple times a year. On your birthday, and on the days you left us, the day I last held you, the day your spirit went to Heaven, and the day your body did. Christmas is coming, and I will drive to the tree and decorate it again. Last year, when I went back on your Birthday in Jan, others had added deocrations too. I think your teachers maybe go there, too. Your tree is so big now. Sometimes I see how tall it is, and it is hard. When the leaves are coming alive in the Spring, you are not, and that is always hard to see. But I love watching it grow. I just wish it could be you I am watching, instead. But this is what we have now, and I will be grateful for it.
I wrote to you today because I realized how long it has been since I found a toy you once played with, or a sock that somehow still pops up in the laundry room. I havent seen the box with your clothes in it in awhile. But I dont forget you. You are in my mind often, when I hear a song, or see a little boy that reminds me of you, or a picture. We love you, Alex, every one of us that knew you. Even when we dont say your name every day. Even when it is too hard to talk about you. Dont ever forget that.

" I wouldn't want to live like...that"

2008-11-21T08:46:00.002-05:00

Many times as Ciarra's mom, I have talked to people who would oppose kids with Down syndrome ever even being born. Moms who have aborted, Doctors who think it is somehow an ethical duty to rid the world of kids like mine. Sometimes it is hard to view the world without rose-colored glasses, because taking them off means seeing that society as a whole deems kids like Ciarra less-than, undesirable, disposable.

New tests to detect it in utero are being fast tracked to the world, the race to be the first with a 100% effective tool for detection and elimination is on. Soon, kids like her, with their gently slanted eyes and their supple and soft little bodies, will be rare. Sure, many folks will continue to choose life for their babies. But society seems to think the best thing to do is be rid of them, and how long will it be until we hear "We can't help you, you CHOSE this for your child"? I suspect not long. That we could have prevented these incredibly special lives from ever seeing the light of day ("it's painless" "just a blood test" "no risk of losing a normal baby!") will be seen as poor parenting, or worse.

I have lived long enough now to have seen some of the worst the world can offer to those born "different" or made different by some travesty in their lives.

Baby Doe, starved to death because he happened to be born with Down syndrome and a 100% repairable feeding issue his parents chose not to treat. His life was seen as not worth living, but his death gave us new laws that granted some care and oversight to those born disabled and needing care.

U.S.C.A. TITLE 42, CHAPTER 67, Sec. 5106a. Grants to States for child abuse and neglect prevention and treatment programs:

(B) an assurance that the State has in place procedures for responding to the reporting of medical neglect (including instances of withholding of medically indicated treatment from disabled infants with life-threatening conditions), procedures or programs, or both (within the State child protective services system), to provide for--
(i) coordination and consultation with individuals designated by and within appropriate health-care facilities;
(ii) prompt notification by individuals designated by and within appropriate health-care facilities of cases of suspected medical neglect (including instances of withholding of medically indicated treatment from disabled infants with life-threatening conditions); and
(iii) authority, under State law, for the State child protective services system to pursue any legal remedies, including the authority to initiate legal proceedings in a court of competent jurisdiction, as may be necessary to prevent the withholding of medically indicated treatment from disabled infants with life threatening conditions;

Terri Schiavo, whose agonizing death captured the nation for 14 days, and made us all silent witnesses to court-sanctioned discrimination, if not murder. Why? Because despite her smiles, despite her seeming reactions to the mother who adored her, her husband and the state decided her life was not worth living.

And then there is the case of Haleigh Poutre, a beautiful little girl whose stepfather beat her so severely she was brain-damaged and seen as being in a vegetative state. The courts ordered her life support removed, too, but Haleigh fooled them all. Her will to live kicked in the week before life support was due to be taken off, and her recovery since has been miraculous, although she will likely never walk again, and her brain damage has done so much damage that many people would procliam they "wouldn't want to live like that." Apparently Haleigh wants to, she seems to enjoy her life, and is making steady gains. That she will never be a college professor or Rhoades scholar is sad, but then, how many of us will be, either? Haleigh's life is just that, Haleigh's.

Who are we to decide whose life is "worth living"? Stephen Hawking lives his days in a body ravaged by ALS, and yet he is seen as a scholar and brilliant mind. He, according to society, is deemed "good enough".

Is it because he has a mind still sharp as a tack, that he never suffered from being less smart, just less able? Why do we allow this judgement to pervade our thinking, that smart is everything?

I cannot fathom a world without the Haleigh's, the Terri's, the Ciarra's, and the Stephen's. We would be the lessor for it. Their need for us to be tolerant, sensitive and able to see their higher graces despite their struggles makes us a better people. We all need to remember that we are a heartbeat or a breath away from being in their shoes, and treat them as we ourselves would want to be treated. With dignity, respect, and kindness. Because God let them live, just "like that". And that is plenty good enough for me.

"electic bills will necessarily skyrocket"

2008-11-03T12:50:00.002-05:00

MY bill is already extremely high, we have hydro power here, plus extreme temps. HOW can anyone believe this man is right for us?

Redemption in a blog.

2008-11-03T09:06:00.002-05:00

I have seen a lot of people who I have long respected make arguments for why Obama is so good for us, why it is ok to vote for him, and I have sat by and watched. I have not been able to articulate my own thoughts well enough, I guess. My overriding feeling is that abortion IS a big enough issue to not vote for him. But I was thinking maybe that was just me, that maybe it isnt a good idea to marginalize myself, be a "one isue voter". Well, today I read this article, and every word rang true to me. I am quoting part of the article. I know what the Bible says, and THAT is what I am voting. Not a man, not a party, but the BIBLE, God's word. Moral equivalance aside. It really is ok to take a stand.

Forget the words of men, forget the media coverage of the presidential race. Just think about these words of Almighty God:

If the people of the community close their eyes when that man gives one of his children to Molech…I will set my face against that man and his family and will cut off from their people both him and all who follow him… (Leviticus 20:1-5)

Do this so that innocent blood will not be shed in your land, which the LORD your God is giving you as your inheritance, and so that you will not be guilty of bloodshed. (Deuteronomy 19:10)

He sent them to destroy Judah…Surely these things happened to Judah according to the Lord’s command, in order to remove them from his presence because of the sins of Manasseh and all he had done, including the shedding of innocent blood. For he filled Jerusalem with innocent blood, and the LORD was not willing to forgive. (2 Kings 24:2-4)

There are six things the LORD hates, seven that are detestable to him: haughty eyes, a lying tongue, hands that shed innocent blood… (Proverbs 6:16-19)

Therefore as surely as I live, declares the Sovereign LORD, I will give you over to bloodshed and it will pursue you. Since you did not hate bloodshed, bloodshed will pursue you. (Ezekiel 35:6)

Every Christian should take these teachings seriously. Is the unborn an innocent human being? If you claim to be prolife in the historical meaning of the word, then your answer is yes. Is abortion the shedding of innocent blood, the taking of human life created in the image of God? If you say you are prolife, your answer must be yes. (Please do not redefine the meaning of the word prolife and say "I'm prolife" if you're really not.)

So, is the candidate’s stand on the issue of shedding innocent blood important enough to disqualify him as a candidate? Yes. While a single issue can’t qualify a candidate, it can disqualify him. In my opinion, this issue clearly disqualifies Barack Obama, just as it disqualified Republican Rudy Giuliani.

I don’t think someone is a good candidate just because he is prolife. But he cannot be a good candidate unless he is prolife. Personally, if he is committed to legalized child-killing, as a matter of conscience I must vote against him.

John Piper takes this same position in an article he wrote about one-issue politics.

Now, when someone says, "But still, abortion isn't the only issue," I agree. I care very much about the poor and racial equality. That's why if John McCain was committed to legalizing the killing of the poor and the killing of ethnic minorities, I would not vote for him either.

But suppose you have two candidates, one who has promised to defend and further the legalized killing of one group of people (any group: women, minorities, disabled, unborn, poor.) You disagree with the other candidate in areas that in their own right might be important, but do not involve the merciless slaughter of millions of people. Furthermore, the second candidate—whom you consider boring and disagreeable—believes that same group of people has the right to live, and he says he will defend their rights, and appoint judges who will defend it. Now, which candidate should you vote for?

If neither candidate were committed to the legalized killing of people, any people, then I would say, by all means weigh and measure those other important issues and make your choice. But can you seriously argue that these other issues trump the killing of millions of innocent children, not just now, but in the decades to come under a proabortion Supreme Court that could have been a prolife Supreme Court?

Don't you believe that though there were other issues in Nazi Germany besides the killing of Jews, Gypsies and the disabled, that all those other issues were trumped by that one? If Lincoln's platform involved ending slavery yet you agreed with Douglas (who wanted slavery to remain legal) in lots of other areas, would you feel right voting for Douglas, knowing you were voting for slavery?

So I say OF COURSE THERE ARE OTHER ISSUES. I don't minimize them. All I can say is the differences between the candidates on those issues don't stack up, even cumulatively, to the legalized killing of human beings. It's a matter of relative importance, not just a number of issues. A man who is a good husband in most respects, but who beats his wife, is not a good husband. That issue outweighs all the others.

In a previous blog comment, someone said they wouldn't vote for McCain due to his failures in his first marriage. I too am troubled by John McCain's treatment of his first wife. He has said it was a failure on his part, but whether he has repented, I don't know. This is one of several things I don't like about John McCain. But his past failure in marriage is not comparable to Obama taking a present stand for the legalized killing of children.

I am not excited about John McCain in every area. But when I compare him to Barack Obama in the overriding issue of our day, the right of preborn children to live, there is a stark and radical difference. In America right now, the rights of Jews to live and slaves to be free are not on the table. The right of unborn children to live is on the table. The killing of the unborn is the holocaust of our day. Where do you want to have stood on this issue? Where do you want the man you vote for to have stood on it? If your grandchildren ask you one day whether you voted for or against the right of children to live, what will you say?

Yesterday someone else left a comment saying, Hurry and compose a blog to the under 30's Christians who are planning to vote for a 3rd party candidate in hopes of "sending a message" to the RNC! FOCA could very well be the last nail in the coffin.

I sympathize with wanting to send a message to the Republican Party. I have done this both in state elections and once on the presidential level. One year I wrote in a third party candidate Alan Keyes, an African American who has boldly stood up for unborn children. There is a time to do this.

But is this the time, when failing to vote for McCain could ultimately remove hundreds of laws limiting abortion at the statewide level—informed consent and parental consent and late term abortion measures? As a physician commenting on my last blog said, prolife physicians and nurses and hospitals could find themselves with a federal mandate to perform abortions, and lose their licenses if they refuse. The Freedom of Choice Act, which Obama promised Planned Parenthood he will sign if elected president (my previous blog has this on video), could ultimately do all this and more. It may also make life very difficult for Pregnancy Resource Centers.

Would John McCain be a great president? I don't know. Maybe he wouldn't even be a good president. There are so many claims by both candidates that their words seem like wind to me. I don't feel like I know a lot. But I do know for certain that one candidate defends the right of the unborn to live, and the other is utterly committed to be sure that it remains legal to kill them. And on THAT issue I know what God says is right and wrong.

Yes, I realize Obama is cool. As I said two blogs ago, I really wanted to vote for him, so I could be cool too. John McCain is not so cool. And he's a Republican at a time where being a Republican definitely isn't cool. The question isn't whether I'd like the Republican Party to change. (I would.) I'm not voting for the Republican Party. In one sense I'm not voting mainly for John McCain. I am voting for McCain because it's my only way in this election to vote for the right of unborn children to live rather than die.

Now, if you think that's an overstatement, that the difference between the candidates isn't that great, or they will not influence the future of abortion in this country, I challenge you to look at Obama's dogged commitment to the legalized killing of unborn children, backed up by his 100% proabortion voting record. And look at McCain's repeatedly stated commitment, also demonstrated by his voting record, to oppose the legalized killing of children. If you think your presidential vote is not for or against unborn children, you don't understand the significance of the Freedom of Choice Act or the significance of the balance of power of the Supreme Court with the Obama judges who are certain to be pro-legal-abortion and the McCain judges who are virtually certain to be anti-legal-abortion.

My conversations with fellow Christians who are prolife but are voting for Obama have common themes these days. They always emphasize "Obama is prochoice, not proabortion." To which I respond, "actually he is pro-legalized-abortion." This is emphatically true, based on his own words and 100% consistent voting record. It shouldn't be considered a matter for debate. What politician in the country is more strongly committed to legalized abortion than Obama is? Every radical proabortion group knows this, and everyone of them have been working tirelessly to get him elected.

news article

2008-10-18T09:10:00.000-04:00

2008-10-16T16:54:00.001-04:00

Photo and video editing at www.OneTrueMedia.com

Inspirational story, bring your tissues

2008-10-13T09:03:00.001-04:00

Dear Mr Obama

2008-10-09T09:33:00.001-04:00

Life is not a gift a politician can grant. It is a right, guaranteed under the Constitution. Barack Obama voted against saving the lives of babies born alive after attempted abortions. The baby he specifically was being asked to consider was a baby boy with Down syndrome. Mr. Obama voted NO. Senator Barack Obama and his campaign staff have made many conflicting claims in an attempt to "explain" his opposition in 2001, 2002, and 2003, while an Illinois state senator, to the Born-Alive Infants Protection Act, legislation to provide legal protection for babies who are born alive during abortions. The language of the Illinois bills was very similar to the language of the federal Born-Alive Infants Protection Act (BAIPA), which was first introduced in Congress in 2000 and enacted into law in 2002. For much more extensive documentation on the Obama record on this issue, see http://www.nrlc.org/ObamaBAIPA/index.... Assertion: On many occasions beginning in 2004, and as recently as August 13, 2008, Obama and his official spokespersons said that Obama opposed Illinois BAIPA because it lacked a 1 sentence "neutrality clause" that was added to the federal BAIPA before it was enacted, and that he would have voted for the federal bill (if he had been a U.S. senator when it passed) because it contained the "neutrality clause." This "neutrality clause" read as follows: "Nothing in this section [that is, the entire bill] shall be construed to affirm, deny, expand, or contract any legal status or legal right applicable to any member of the species homo sapiens at any point prior to being born alive as defined in this section." Obama said that such a clause prevented the federal law from conflicting with Roe v. Wade. The Obama campaign asserted "there are major differences in state and federal bills, including the fact that the federal bill included a neutrality clause." Response: In the first place, the original federal BAIPA introduced in 2000 was only two sentences long it merely defined as a legal person any human, "at any stage of development," who achieves "the complete expulsion or extraction from its mother" and then shows signs of life (heartbeat, breathing, or "definite movement of voluntary muscles"). This bill, which received initial approval from the U.S. House of Representatives 380-15 in late 2000, said nothing in either direction about the legal status of a human prior to birth. Therefore the "neutrality clause," added in 2001, simply made explicit what had originally been clear if implicit that this bill dealt only with the rights of babies who had already been born alive. Obama insisted that the purported lack of a "neutrality clause" in the state BAIPA was all-important. NRLC uncovered, and publicly released on August 11, 3 documents that proved that on March 13, 2003 Obama, as chairman of the Illinois Senate Health and Human Services Committee, actually presided over a committee meeting at which the original state BAIPA (SB 1082) was revised to make it virtually identical to the federal law including the addition of exactly the same "neutrality clause." Yet, immediately after that change was made, Obama voted against the amended bill, and it was defeated on a party-line vote, 6-4. In other words, Obama led the way in killing a bill that was virtually identical to the federal law the federal law that, since 2004, he has insisted he would have voted for if hed had the chance. Obamas campaign continued to misrepresent these events. For example, on August 13, they submitted to the Chicago Tribune a chart that purported to contrast the "2003 Legislation That Obama Opposed" with the "Federal Legislation That Obama Would Have Supported" this chart falsely claimed that the "neutrality clause" was a "failed amendment, not included in final legislation." On August 16, when David Brody of CBN News asked Obama (on camera) about the NRLC charges, Obama said that we were "lying." He repeated his claim that he would have been "fully in support of the federal bill that everybody supported which was to say that you should provide assistance to any infant that was born even if it was as a consequence of an induced abortion. That was not the bill that was presented at the state level."

On August 25, the independent group FactCheck.org (www.factcheck.org) issued a review of this question that concluded, "Obamas claim is wrong. In fact, by the time the HHS Committee voted on the bill, it did contain language identical to the federal act. . . . The documents from the NRLC support the groups claims that Obama is misrepresenting the contents of SB 1082."

Best Friends Forever

2008-10-02T07:58:00.004-04:00

when Ciarra was four, a neighbor stopped down to see Jim, bringing with him the granddaughter he and his wife were raising. She was a wild child, scrappy and stout, loud and sometimes incredibly mouthy.

We watched as he guided her, he has a voice like sandpaper, roguh and choppy, but gentle and sweet with this little girl. How he loved her was so obvious. To this day, 6 years later, he calls her "the Baby".

Ciarra is "The Baby" too, and he has come to adore her almost as much as he does his own. It is funny to watch this hard, worn man love these girls, he dotes on them, spoils them rotten. Last Christmas, he helped Jade design and build an end table that looked like a reindeer, they cut it out, sanded it till it was butter smooth, then painted and trimmed it. It was a beautiful thing, and all the more so for the hours of love and companionship they put into it.
As Jade has grown, she has started to settle down a bit. Visits arent always drama anymore, the girls have slipped into an easy pattern. Their friendship has grown as they have, 6 years of dressup and arguing, 6 years of illnesses and best friend bracelets. 6 years of holding hands on long walks, arts and crafts and glue all over the carpet. 6 years of knowing someone will be holding a spot for you on the bus.
It has not always been easy to let them be, there have certainly been issues and struggles, and I am sure there always will be.

I used to wonder if they would outgrow one another, now I see...best friends forever dont outgrow one another. Thier friendship is so rock solid, it is a beautiful thing to see. In the world of Down syndrome, we worry so much about relationships and friendships, will our kids know that kind of love.

I have been so blessed to see that the answer is yes. It is not without a lot of work. Sometimes I want to send them both to their respective rooms and not let them play together for awhile. Sometimes Jade's grandmother thinks the same way.

But for all of us, in both families, there is a respect for this thing they have created between them, arguments and all. It is a thing of beauty, it is a thing of fragility sometimes, but it is also a thing of terrific strength for both of them. How blessed they are, and how blessed we are to know that for both of our girls, Best Friends Forever is everything it is cracked up to be.

Eight years.

2008-09-26T08:33:00.001-04:00

Make photo slide shows at www.OneTrueMedia.com

Thinking of you today, boy.

Capella-the Lake

2008-09-21T20:29:00.001-04:00

The Lake at Capella

2008-09-21T18:37:00.001-04:00

thanks to Chris at Legin Photography

Boothbay Harbor 2008

2008-09-17T08:53:00.001-04:00