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
Will he be entitled to a shadow? Is it a school that might have therapies as well?
I was told he will probably qualify for a shadow for 24 hours a week.
I don’t want him to have a shadow with him all that time, I prefer that his shadow be an extra support to any kids in the class that need it and help him as well. It’s not healthy for a child to have someone monitoring his every move, and it will keep him feeling different and will ensure he is seen as different by his classmates. He would benefit from extra support but doesn’t need someone on top of him all the time.
You can request this. I have a child who needs a shadow for medical reasons, and he has no idea the shadow is there for him. She helps out with all the children so he shouldn’t feel different while always discreetly keeping an eye on my child. It’s been working well for us.
I’m glad to hear this has worked well for you, Racheli! I discussed this with the principal and he was very open to it. We’ll have to see what happens as we move from theoretical to actual application.
My child as well has a shadow for medical reasons
This is incredibly inspiring. Kol Hakavod and good luck to your sons in school!
Thanks, Naomi!
“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.” YES! This is the challenge of our generation! To know our children as only parents can and to advocate for their best interests!
Wow, Avivah, what a huge challenge! I think you are brilliant for choosing to help Yirmi fulfill his individual potential. The decision will come with challenges as would any path, but this looks like what HKB”H would really want, considering He gave Yirmi the potential! I remember learning that נס has 3 meanings : test, miracle, and flag. May I suggest that when you pass the tests (challenges) H’ intercedes (miracles) and then you can hold the flag high for others to see and follow!
You are amazing, חזק ואמץ!!! Strength and courage!
I love your comment about neis, thank you! And thank you for all the other encouragement, too!
Avivah, you have already answered the question you are asking nine times. When you chose to homeschool, you were picking up both ends of the stick– the part where your kids would grow up very differently from their peers, but were more likely to meet their potential. I don’t know your kids, but you know, looking back, if the tradeoff was worth it. Why start treating Yirmi differently from the others now? <3
So nice to hear from you, Malkie!
When raising a child with special needs, there is so much focus on intervention of some sort, to fix your child. The idea is that more intervention and more support is always better. And here I am saying, he’s not broken and doesn’t need to be fixed.
It’s not easy when walking down this road for the first time to constantly be saying, no, I’m going to do it my way and I know best for my child. Because sometimes I worry that I don’t know best.
So with all the similarities to taking the road less traveled with regard to homeschooling, at the same time this is a different path in some key ways. What’s the same is going down a new path and not knowing how it’s going to turn out, and having to trust my intuition.
I don’t mean to belittle the challenge! These are questions that are huge and scary and there is no way to know the outcome. But at the same time, take a look at where Yirmi is now, and compare it to where he was predicted to be if you were a good girl and listened to the experts. The decisions you’ve made so far have gotten you to this decision, now– a decision you wouldn’t have gotten to make if you listened to those experts.
I didn’t think you were belittling, Malkie, I know you too well for that!
I understand better what you meant though, about picking up one end of the stick up. I thought you were referring to homeschooling in general, and the same idea applies then as well. Yes, we made choices and those choices have consequences. BH we’re glad we’ve done what we’ve done so far (though I know how much I wanted to do for him and have fallen short) and am glad to be where we are.
Way to go Avivah! Loved this post so much. Brave and inspiring, as usual!
Thanks, Regina, I really appreciate your feedback!
A beautiful video put out by a preschool in my hometown, about inclusion. So powerful!
http://www.jwire.com.au/inclusivity-and-inspiration-at-yeshivah-beth-rivkah-pre-schools/?fbclid=IwAR1z5ConC5eW4Q1Tr-pTiSdQc9oUElhiCjEX9PuxNpd-D1CSpqDEwsX0g6Y
Thank you for sharing that, Chani, it’s very touching! I look forward to the day when this is common practice and not considered noteworthy.