Revision and Reality

Things have been moving along with amending Clare's IEP and adding some services. We had a very successful meeting with her special education team, despite the nervous pit in my stomach and talking too fast at the beginning of the meeting. Her kindergarten teacher, special education teacher, and therapists all agreed that Clare is very behind academically compared to the rest of her class. Socially, she is doing a great job adjusting to kindergarten and interacting with her peers. But while her classmates are writing letters and words and learning how to read, Clare has only learned to write two letters and can only recognize about five letters (although she can rote spell her name out loud, she is inconsistent when it comes to actually recognizing the individual letters in her name). In our opinion, we have not seen any progress in Clare academically. One of the ABA specialists for the school was at the meeting as well, and she agreed that ABA would be a great way to help Clare learn her letters and numbers and is eager to start working with Clare. We have another meeting scheduled at the end of this week to formally amend Clare's IEP to include more academic goals and add ABA services. I am excited to see what progress Clare makes after beginning ABA services. And, after this meeting, I felt like we were finally working as a team to help Clare, and it is not her parents versus her teachers. I definitely felt much better leaving the meeting!

With all the concern over Clare's academic progress, I find myself sinking back into a Williams syndrome hole of pity at times. I have often said I wish we could put Clare back into her special preschool bubble, but that is for my sake, not hers. In that bubble, I know the other parents aren't looking at me wondering what the heck is up with that girl. In this new mainstreamed life, I am not so confident that the other parents aren't asking those questions. In reality, they probably could care less, but I still feel like we scream DIFFERENT!

Clare went to her first kindergarten "girls only" birthday party. It was a pony party at a barn, so I figured there would be some riding involved. Clare was beside herself with excitement about the birthday party and riding a horse. She was wound up by the time we arrived at the party and was running around everywhere. The other girls at the party were a little more subdued, but I couldn't fault Clare her excitement. The owner of the barn was a little gruff and had so many rules for the girls - no running, no screaming, no yelling, no feeding the horses, don't walk behind the horses, etc. I could barely remember all the rules, never mind expect Clare to remember them. When it came time to riding the ponies, I asked the woman if I could walk beside Clare in the ring (there was no one doing this, just someone leading the pony). She told me that was not possible, so I explained that Clare has some balance issues. She basically cut me off and said, "She'll be fine, we've done this before." And Clare was fine. She did a great job and loved every minute of it! She couldn't wait for her turn again. I, on the other hand, fought back tears and had to walk away for a moment before I really lost it. A couple of parents asked me if I was okay. My neighbor (whose daughter is in Clare's class) was very sweet and gave me a hug and told me that Clare was loving it and doing fine (she was the only parent there who knows about Clare). I know I looked like a crazy mom crying over my daughter riding a horse, but I was so full of mixed emotions. Scared of letting go and trusting that Clare would be okay (in the hands of a stranger who brushed my concerns aside). The realization that, although Clare had a great time at the party, none of the girls really played with her, and she was my buddy throughout the party. And joy that Clare loved every minute of the party.

I have to remind myself that it's not my perception of Clare being left out that counts - it's HER perception that really matters. And she does not feel left out. Maybe she will later in her life. I don't know. But right now, she enjoys being in the moment and does not worry about what others think. Clare does not hide her emotions. If she is happy, you know it. Excited, doubly so. And upset, triple! I know I could take a few lessons from Clare.