Tuesday, June 30, 2009

My Kayak girl

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.

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

Monday, June 29, 2009

Saturday, June 27, 2009


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.

Tuesday, June 23, 2009

a VERY important SCOTUS decision-IDEA law


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
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–
(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–
(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.

Monday, June 22, 2009

off to summer camp again

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.

Wednesday, June 17, 2009

Oh no. You hurt my feelings.

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

Saturday, June 13, 2009

Saturday, June 06, 2009

the CUTEST boutique-y clothes this lady makes

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.

Friday, June 05, 2009

Conversation Partners- Communicating Partners

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


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
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
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.





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.

What can you do to help?

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.


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.


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


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

Tuesday, June 02, 2009

the greatest fan of your life

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.