This past week, ds12 started school. He started at the beginning of Chanuka and had the chance to get started when the days were shorter than usual and the class smaller than usual. He’s really enjoyed it so far, and I trust that he’ll continue to enjoy it after Chanuka vacation when the class routine gets back to normal.
I had a wonderfully productive conversation with the principal of the school that ds12 is attending, who agreed to accept ds6 for the coming year. They’ve never had a student with Trisomy 21 before, but he said, “The question isn’t if we’ll accept him, but how to make it work best for him.”
Such an amazing attitude and I’m so grateful that it was so easy. I was expecting it to be hard, to spend weeks researching different options and approaching different principals of mainstream educational institutions and trying to convince them to take Yirmi. I was concerned that I wouldn’t be able to place him in a school that religiously was similar to where I would send his brothers. This quick and heartfelt acceptance was Hashem’s loving kindness to me.
I let the principal know that I don’t consider school a babysitting service, I don’t want Yirmi to be mainstreamed just for social purposes but that he’s bright and we know he will learn – with modifications and support when necessary – and our hope/intention is to keep him in the same school through eighth grade.
I mentioned this to a friend who asked if I thought this was realistic – on the part of the school and for Yirmi himself. Yes, I do. As with any child, I expect there will need to be adjustments and re-adjustments made over time. As with any child, there are likely to be frustrations and disappointments.
I also know he’s capable and believe he will become more capable only by being challenged with new opportunities and being in a framework where there are expectations of him to rise up to. If I don’t believe in him, who will?
Sometimes I worry that I’m creating a situation for Yirmi where he won’t fit in anywhere – too advanced for peers in the special ed world, but still struggling to measure up in the neurotypical world. As with other choices I’ve made that weren’t the typical path, I sometimes wish I could see how it would turn out, to have a prototype child who goes down each path, so I could know now what my choice should be.
But none of us get that luxury. We have to listen to our intuition and make the choices that feel best for us based on the factors in front of us. As comfortable as it would be to take the path that is recommended by the ‘experts’, that path hasn’t been shown to lead to the kind of life I want Yirmi to have. All those who have raised their kids with results that I’ve admired, have done it in spite of the system – usually with great resistance from the system – and with great personal involvement.
So, I periodically have to remind myself, stop being so worried about taking the path that makes sense to me!
Back to that dilemma of mine about Yirmi not having a place to fit in. When I read the book Taking Tamar, written by a single mother who about thirty years ago adopted a child in Israel with Down syndrome, she expressed the same concerns. Her daughter was considered unusual in her accomplishments. Unfortunately, the author died a short time before I read the book; I would have loved to have spoken to her about this.
I brought up this concern to several parents who have children with Down syndrome over the last couple of weeks, who all agreed it’s a realistic concern. Then I circle back in my own mind and ask, what’s the choice?
To know how much he’s capable of, but to deny him opportunities to develop because it will push him beyond his comfort zone, to choose to push him on a track that would limit him because it could potentially be socially more comfortable? Can I consciously choose to let the bar settle wherever it settles, knowing it will decrease his functioning in every area of his life?
And what about my fear that at a certain point people won’t want to be his friend and will spend time with him as a charity case? That fear needs to be challenged. Isn’t it possible that people will like him for who he is, that he doesn’t have to be more or less than who he is to be appreciated and valued in the mainstream world?
Right now, he’s in a mainstream but personalized academic framework. He’s thriving, the other kids love him, the staff loves him, and he loves going to school. I’m really, really happy with where he’s at.
Sometimes I think it’s good to look ahead and plan for the future, and sometimes I think I’m borrowing trouble by worrying about the future when all I can do is live in the moment. Right now he’s doing great. Right now, it’s clear that being in a class with neurotypical peers would be most beneficial for him.
I don’t know what will happen down the road. I don’t know how we’ll deal with the challenges that come along and I can’t predict what those challenges will be. We’ll just have to make the choices that we feel are most supportive of him at that time.
Avivah