AWESOME- thanks Jesse!

http://newmedia.funnyjunk.com/movies/Puppet.flv


sorry, had to delete the actual video, the sound came on automatically and jumped people.

Mr. Blue Sky-makes me blue

http://www.mrblueskymovie.com/main.html

Mr. Blue Sky Plot Synopsis:

An unconventional love triangle between three childhood buddies; two girls, one born with Down syndrome, and one boy, who all grow up fighting who they are inside, how they are perceived by society as a whole, and who they ultimately strive to become as individuals through the obstacles that are inherently present.

Mr. Blue Sky is a ground-breaking film that explores the romantic relationship of a woman born with Down syndrome and a "normal" male, as perceived by today's society. Mr. Blue Sky attempts to break down society's barriers, much like "Guess Who's Coming To Dinner?" did in the 1960's, as it aims to "change lives" through "changing minds."

Mr. Blue Sky is a heart-grabbing story that will ultimately change the way society views all people as "individuals" first and foremost.

The title is derived from a little girl's hope and love through the sun (Mr. Blue Sky.)

This new movie will be out soon, and I am having mixed emotions about it. It is a beautiful premise, girl with DS loves typical boy, they grow up and fall in love. It is a fairytale in a way Cinderella never was. Because Cinderella never had to overcome anything but poverty. Her beauty defined her, in the movie. We never got to know any more about her than that she was beautiful. For her Prince, that was enough.

My daughter is what many call "high-functioning", a term wrought with misunderstanding. Ciarra lives a fairly normal life. She has wonderful typical and some atypical friends. She attends a regular third grade and plays on a regular baseball team. But...Ciarra still has Down syndrome. As loved and accepted as she is, there is not a soul in her world who does not see her features and make some supposition about who she is. Not necessarily a correct supposition...but anyway. We who love her love her more for the DS, not in spite of it, but in ways we never may have had she been born "normal". She has taught us about dignity and unconditional love. And she has taught me about the world, the good and the bad. And that is why this movie scares me to death.
Normal is what we live every day, despite the DS. But I dont have any visions of Ciarra going off to college in the same way I do for my other 2, she will need some supports, or getting married to a typical young man. I dont dream of grandchildren through her. That is painful to write, more painful to feel. and I dont set the bar for my daughter. But I dont want her to think she has failed somehow if she doesnt attain...that...either.

Right now, she is 9, and we are enough. We fill her days with laughter, and take every opportunity to make it special. We adore her, dote on her, would pull the moon from the sky if we could. We live every day hopeful, with an eye on the future and one on the past. Ciarra, like many with DS, is breaking the old mold. Her life is wide open ahead of her. And yet...a life in which a handsome, healthy, beautiful young man with a normal component of chromosomes falls in love with her and overlooks her obvious innocense, her failure to grasp deep concepts, her...differentness...seems almost cruel to imagine. It is a beautiful theory, indeed. But every year that passes brings a new and knowing look to her classmates and peers. They love her, to be sure, but as much as that is true, they love her despite her DS, they do not overlook it altogether.

Perhaps I should wait to decide how I feel till after I see this movie. But right now, it makes me want to cry. Because as beautiful as it is, it really is nothing more than a fairytale. And a fairytale that my princess just might believe could come true. I dont want to have to pick up those pieces.

she's gonna be the death of me

we have this big, fat Maine coon cat named Callie. She is like 12 years old. Weighs probably 17-18 pounds. BIG furry cat. Ciarra loves her, and this poor cat loves C right back. Ciarra can do anything to her, she has dressed her like a baby, rolls her around in a doll carriage, has put clothespins on her ears, etc. Cat just doesnt care.
Yesterday Ciarra scooped Callie up to walk down to the bus stop with her. Holding her like a baby, belly up.I watch through the living room windows, buyt the driveway is long, and they are fairly far away. So I look, and there is C with the cat. Look again, and no cat. Ciarra is bent over her backpack, messing with the zipper. Bus comes, and she hoists this suddenly VERY heavy backpack up, and is trying to get it on her shoulders. Backpack isnt THAT heavy...wth? Then it occurs to me, faster than I can blink...shes got the damn CAT in her backpack! I go to yell, see her take the first step onto the bus, sort of teeter backwards from the weight shifting going on....and see one not very happy ears laid back freaked out cat come squeezing out of the TEENY little hole where she hadnt completely gotten it zipped, hit the bottom step of the bus, and tear off. Ciarra turns to my voice, shoots me an "ALMOST DID IT" grin, scrunches her shoulders as if to say "I dunno" and gets on the bus to a chorus of her best friend hollering her name....this kid is gonna be the death of me!

not just treading water anymore

sometime soon, I am going to take the time to post about Ciarra's new teacher, Mrs. C, and maybe even some of the incredible things she has written to me in our communication notebook. The notebook is something we have in the IEP, and have had for years. Until this year, however, it has not ever been anything more than an occassional tool to tell me what is going on in Ciarra's school life. This year, in so many incredible ways, is different. THIS year, we have Mrs. C.
Don't get me wrong, Ciarra has been blessed with teachers who were wonderful, caring, awesome people who did their best to make her school life the very best it could be. But there is something different about Mrs. C, something...awesome. Mrs. C is a former Special Education teacher now teaching a regular 3rd grade class. 15 kids (perfect!) who think she hung the moon. I am starting to believe it, myself.
I am still trying to wrap my head around the things she says about my daughter. Intuitive, remarkable, insightful, honest takes on what she thinks is best for this child of mine. I fought hard for Inclusion this year. At first, I was told it couldn't be done, that our school doesn't really have what it takes to make it work. They were wrong. Initially, they wanted to put Ciarra in the special ed room more often, to mainstream her versus including her. The difference between the two is subtle, but very real. Inclusion means the child is in the regular ed classroom for the vast majority of their day. mainstreaming means they are technically a "Special Ed kid", who is sent into the regular classroom for things like gym, art, music, and lunch. Mainstreaming is not what I wanted for my bright, funny, engaging daughter. But it is, in effect, what she was having up until this year. She was pulled out for 2 plus hrs every morning for reading and math, went from there straight to lunch, then recess, and then electives/specials. In the afternoons, she was pulled out for therapies, Speech, and OT. Her actual classroom time was nowhere near what I had believed it to be. I believed she was included, but she really wasn't.
At the end of 2nd grade, we had our IEP. I came into it knowing how little actual class time Ciarra had. I had seen for myself the many things she missed out on, for instance phonics. She is a STRONG reader, missing things like phonics with the class made no sense. Her schedule seemed to have no rhyme or reason. Why Spanish, for instance, for a kid struggling badly enough with English? Could that time not be used for speech, so she would lose less classroom time? The answer, I was told, was no. or, to be more accurate, "Ciarra couldn't handle it", "We can't teach her the things she needs, what will she work on?" "We don't want an aide sitting there doing the work for her." All very valid issues, when you get right down to it. It would be tough to make true Inclusion work, but it was her right, it was the law, and it was the right thing for her. Now, HOW to make it happen? I needed the school to believe, in themselves and in Ciarra, too.
The first thing we did was call in Maine's Disability Rights Center. They had an attorney work with me to figure out what I wanted, what barriers there were, and what steps needed to be taken. They sent an Advocate to the IEP meeting, and she made some wonderful suggestions. The school initially wanted to "wait and test her early in 3rd grade to see where things stood." That meant starting the year in the Special Ed setting, not in a classroom. Not with her peers. I voted "no". The Advocate suggested we get an evaluation by the Center for Community Inclusion, a group that helps schools make Inclusion work. The school wanted to hold off till this year, I fought to have it done right then, at the end of 2nd grade. In the end, I won. On virtually the last day of 2nd grade, a man came to the school and spent the entire day watching, making notes, observing Ciarra. He met with her teachers, the Special Ed Director and teacher, and he met with and listened to me. In the end, his report would point out all the great things they were doing that would facilitate Inclusion, made some great suggestions, and some poignant observations. Among them, that Ciarra was loved immensely in her classroom, met with a hug upon arrival, and enjoyed being there very much. He also noted that she did very well listening, and that she was definitely a candidate for Inclusion. With every word I read, my shoulders puffed up higher. She could do this. WE could do this. But...would they?

(more to come, soon!)

this is my normal

we are well into the routine now, up and going bright and early for school. It definitely makes life on a schedule necessary, unlike the lazy summer days when the kids have almost nothing scheduled. Ciarra, I must note, is not a morning person. If school just started at 10 instead of 8, she would be much easier to get moving in the morning. But alas, lol, I cant change the entire schedule just for her. And so every weekday I walk into her room at quarter to seven, snuggle in beside her and wake her up as gently (but firmly) as I can. If I have stuck to the schedule, she will have had her shower the night before, and clothes are laid out ready for her to argue over and re-pick. That is, after she is standing upright and semi cooperating in the morning rush. Motivation is the key with this kid. And so sometimes I have been known to resort to bribery. "If you hurry, we can call a friend to come over after school." Two weeks ago, after 15 days of school, the deal was she could invite a friend or two to go bowling.



Well now, Ciarra has a real problem with "one or two". I ended up with her PLUS 4 others!
(How do you say no, though, when you are so busy doing cartwheels that the kids WANT to come?)Apparently, someone forgeot to tell my daughter that "kids with Down syndrome don't HAVE friendships." Uh huh. Tell that to the kids clamoring to come hang out every time I walk through the door of her classroom.

And so we bowled










And we laughed, and we had tickle fights.









We played video games:




And made scary faces:



Played hide n seek...lol








And some air hockey:





I love these kids, I really do. And gosh they are cute! But I gotta admit, when it comes to cute, aint NOTHIN as cute as the one that's got the butt wiggle thing goin on.



9 years ago, you never could have convinced me that my life would be overflowing with laughter, happy children, hugs, warmth, and love. Now, it is normal. It feels natural to be known as "Ciarra's Mom" or "Jesse's Mom" or "Kristin's Mom". And it feels completely natural to have this amazing little spirit in my life, reminding me that normal is relative.

Season's Change

the nights are beginning to get quite chilly here, and the leaves are metamorphosing into liquid golds and candy apple reds. Fall is coming, the season is changing again. Here in Maine, Fall lasts about 2 months, and then Winter comes, and lasts about 5 months. This time of year is usually seen as the end of the cycle, the dying of the buds and blooms, the end. For my family, Fall is a renewal, the fresh crisp air is a harbinger of hope.
September is tough for us, with the loss of our son, which seems to stretch endlessly throughout the month. His leaving, his killing, his removal from the machines that breathed for him but were never really LIFE. I would skip September altogether if it weren't for Jesse's Birthday and the beauty all around me. My picture window looks out across the river, the mountain rises behind me, and the air is clean and tinged with the smell of woodsmoke. I feel alive in ways I do not feel the rest of the year.
And yet, the changing of the seasons this year brings with it a change of seasons for me, personally, as well. There is a sense of loss for a friendship that doesn't seem to be what it was, that has been tainted with pettiness and anger and seems beyond repair. Even though it seems to be nearing the time when the bloom will fall and the wind will blow hard and cold, it is important to me, valuable, it is a part of what has shaped me.
My summer was hot and passionate, my Fall will be cooler and more airy. My friendship has changed, and it will be different forever, now. But I held it in my hands as surely as I did the Lupine that grows wild and free to welcome Spring. Like the Lupine, it is drifting away from me, but the seeds are planted deep, and perhaps time will bring it back to me. It may have crumbled in my hands, but its beauty will always be with me. Maybe I will be surprised again someday, to see it growing strong and flourishing without a touch from me.
Lupine is strong, and I think...thought?...that this friendship was, too. Maybe it is just the changing of the seasons, maybe it is the strength of the winds that bend us that is pushing us apart. One thing I do know, the strongest and most beautiful wither and die with too much toil. And I have a knack for pushing too hard. I will leave it be and see if it grows back of its own will. The season is changing, and I am changing, too.

100% guarantee...you WILL laugh

We have made a discovery!

we have made a new and important discovery!! Bras are not comfortable!! They are really cute to look at, and fun to try on, but oh so not fun to wear, especially when they MUST be put on by oneself, and get all tangly. The answer, we discovered yesterday, thanks to an angel at Gap Kids, is a CAMI bra! Like a t-shirt with a built in bra section. All cotton. No tags! Smooth not "bumpy". Not itchy!! Yay. Life is good.

http://www.gap.com/Asset_Archive/GPWeb/Assets/Product/515/515493/big/gp515493-00vliv01.jpg

this is SO my mother...ok, its ME too ;)

sometimes I think everyone thinks I have it all together

And Im not supposed to have bad days or bad feelings, Im just supposed to keep on being all rosey and happy. But somedays I dont feel that way, and sometimes I need to be the one needing a shoulder. I think I have always handled everything, and people see me as strong or capable. maybe a little nutty, too, but strong and tough regardless.
Today I dont feel tough. I feel exhausted. I feel like I am teetering on the edge of exhaustion. Trying to help my dad out, and buy his house and land so the tax man cant get it. :( Trying to help him get into Senior Citizen housing...."but please hon, dont call it THAT." I am facing the future with this man who is still in many ways a stranger to me. And yet, he IS my dad. Whatever obligations he failed to live up to for me as I grew up dont matter now. I feel my obligation to him keenly. My mother despises him, and I made the mistake of discussing his situation with her very briefly, in an email. It opens the door to so many emotions, so much bitterness. I think that I have forgiven them both, but I doubt I will ever see the day either of them forgives and moves on. It is tiresome being in the middle, and Im almost 40, so it sucks out loud to feel 6 again, arms thrown wide, standing between them...hollering stop.
I am up to my eyeballs planning a birthday party fit for an almost 12 year old boy, to boot. Jesse, my darling son, is one year away from being a teenager. His voice alreadys breaks when he talks, and he is almost taller than me now. I mourn the little boy he was, and am excited about the man he is becoming. But it is a big job, doing this right. 8 little boys...it should be a blast, actually, if I can pull it off.
Just because Im a glutton for punishment, I planned Ciarra's "I did 15 days of school without whining" party at the bowling alley for tomorrow night right after school. 4 of her friends, bowling and pizza. I love that the kids want to come, and I wish I had a van. LOL. We will hurry home to be there for the above mentioned 8 boys arriving for a sleepover. It is going to be a busy weekend.
Found out Ciarra's ears are worse than before today. She has perforations on both sides, and pretty poor hearing. We will need the FM system at school, and possibly hearing aides. She just got glasses! I do know this is tiny in the scheme of things, and she is SO blessed in life. But it sucks, nonetheless. Dare I say that out loud?
Anyway, life is good, full, and fine. But it throws a few curveballs sometimes, to keep me on my toes. Oh well, everyone is healthy and relatively happy.