Tuesday, December 09, 2008


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.


My name is Sarah said...

Hi Michelle, This is Joyce, Sarah's mom. You have so beautifully worded this dilemna. I so remember being at that same point. For us it was the begining of the 5th grade year. When we finally agreed that she would spend the morning in the life skills room and the rest of the day with her homeroom we somehow felt we were letting the "fight" down. Full inclusion had worked so well K - 4. My husband and I spent so much time talking about it and worrying about it. In hind sight, it was the best move we made for Sarah. All of a sudden she blossomed. She started to jump out of bed in the morning, take greater responsibility for self care and took pride in her work that she was accomplishing in a setting a little more structured. The best part is the kids in her homeroom in the afternoon started liking her more and including her more. I believe because she was more at peace herself. I will be anxious to hear how your meeting went. Good luck.

Hite Family said...

Look what I missed since I havent been around!! I have so been there done that still doing that.. Ashlie made the transition to Special Ed room more towards the end of 3rd grade and in 4th grade it was a final decision for us I have to admit a hard one but one i look back on now and am truly thankful I made. Ill log onto ROA tomorrow girlfriend!

My Opposite Boys said...

No words of wisdom from me, I am just starting this journey. I love that you have opened your life up to the world, I love your honesty and wisdom. I understand and aplaud you for your choices here. I absolutely LOVE the picture of her holding the hand of her prince, I am sure he is VERY charming.

jennifergg said...

I love this post. It feels intuitively right to me, though we haven't reached that point with Avery yet.

I think in the fight to be included, all the parents that have come before us have done so much good work. The point is that now, we have a choice. And I'm grateful for that choice. To do what we feel is best for each one of our children, in each of their lives, at each point along their journey.

Keep up the good work, you're doing great (both of you!)


datri said...

What a wonderful post. It really is about doing what's right for YOUR child.

Shannon @ Gabi's World said...

That must be a tough decision! Gabi has for the most part been in a Special Needs setting. She would just drown in a full inclusion setting. Every child is different and you are right. You have to do what is best for Ciarra. The photos are gorgeous by the way!