Yesterday I went for an interview with the Conductive Education Center of Orlando because they have a free Youngster program for kids with motor disabilities and we wanted to see if it could help Ava.
It’s a holistic educational approach that helps kids reach milestones by developing their physical and cognitive ability at the same time. An approach that combines learning with hands-on activity sure sounds like a great idea (18 years of youth ministry is not lost on me).
I got a tour of the classes. Elementary kids with dry-erase boards. Then, 6 middle schoolers, each with an aid, doing an activity together. It stirred me, how different it all looked from the clusters of middle schoolers I’m accustomed to spending time with. If you work with special needs kids, it was probably a normal scene But I don’t…which is nothing to be proud of as someone who’s committed a lot of my life to this age group…and then thinking of my daughter being in there was just overwhelming again. It wasn’t supposed to be this way. These glimpses into the future are hard.
Then I saw a high school class. Similar experience. She explained these students wouldn’t move on to further school, but to a young adult program.
Cheerful, young aids were everywhere helping kids practice walking. I saw one aid with Down’s syndrome carrying on a hallway conversation. Awesome. Another group of kids on exercise mats working with their aids, together.
Ava’s evaluation was pretty typical of what we’ve done so far with therapists. Observation of her interaction with me, how she handles tummy time, how well she sits, what she does with her arms, etc. Comments on how pretty she is, how sweet.
At the end, the conductor (this is what they call themselves…) told me she thinks they could help Ava this next year with the baby program as she works on her physical milestones. Like me, she sees this as a critical window of time in which we can help Ava’s brain develop and lay the best possible foundation for her to build skills for the future. Not everyone seems to feel this way, and I was really encouraged that we seemed to be on the same page.
Then she told me, gently, that she has worked with some Angelman kids, and that as Ava gets older she wouldn’t be a candidate for a center like this because she won’t have the cognitive ability, the attention span for it or the skills for working in a group that are necessary to participate.
That moment when you’re told your kid won’t be capable enough to attend special needs school…
Now, before any of you get too judgy on this woman for not daring to dream on Ava’s behalf…the truth is, she was right. She later commented that we don’t know what Ava’s capable of, and I know she sees value in helping her reacher potential. But there are some limitations attached to Angelman that we can’t get around. One of them will be her limited intellect.
This is one of those things that is a big source of grief for me, but it won’t be for Ava. I think most of us want our kids to delight in the things we love, even if it’s just wanting them to be fans of our sports teams. Often it’s bigger things than that, though. I won’t apologize for wishing my daughter could grow up to experience & love learning the way I do, because I would do anything to open that door for her. But it won’t happen…and yet…she will be full of joy.
I may spend the rest of my life in wonder at that.