February 7, 2008
Our family’s journey to make sure our special son was included
(Page 2 - Previous Page)One thing that is certain: We reacted to Michael's accomplishments with all the same, if not greater, enthusiasm that we did to all of Jason's accomplishments. It was like having a first child all over again. Every achievement is amazing and worthy of a standing ovation.
Our immediate commitment to keep Michael within our community led us to Temple Israel's nursery school as well as other pre-preschool programs. The other kids didn't see any differences; they just saw Michael. And because it started that way, it stayed that way from nursery school through pre-K and into the temple's day school through kindergarten and first and second grades.
Jason introduced Michael to the school during Michael's first week in kindergarten one day during tefillah. We'd written a detailed letter to the parents, introducing our family.
At our request, the principal, Eileen Horowitz, explained in simple terms to everyone about Michael having Down syndrome, and then Jason spoke. He was just 8 years old. Horowitz invited the kids to ask any questions they'd like.
One child asked Jason, "What's it like to have Michael as a brother?"
Jason's answer: "Well, he stands in front of the TV sometimes when I'm watching, and he won't move when I tell him to."
Just like any other brother.
Another little boy who'd known Michael "forever" said to his mom, "What's the big deal? It's just Michael!"
Perfect. I got wonderful feedback from parents who loved having Michael at school.
We provided Michael with an aide and the teachers with as much support and information as we possibly could. But there were differences: Michael can't read like the other kids can. Math concepts are very hard for him. He wanted to play back on the nursery school yard, and he ran away every once in a while.
By the time he reached third grade, we brought in an inclusion specialist, but the curriculum became too complex; Michael's confidence began to take a hit. My heart was breaking as he began to act out; he had no other way to express his feelings of being left behind. I wanted nothing more than for him to feel a part of his community, but that was no longer happening.
In all the inspirational shows about kids with disabilities, this is the part that's left out. The hard part. The not-so-inspiring part. The part where you cry a lot and wonder, "why me?" and "why this sweet child?"
We began a long and painful part of the journey, first by moving to the public school system, which is required by law to provide for kids with special needs. We spent two years searching for the right place for Michael.
My heart broke a little more every day as I watched teachers try and fail to meet his needs; he ended up crying under desks at one school. I got calls almost every day from aides or school assistants asking for help or for me to pick him up as he melted down because of constant staff changes. It got to the point that I was afraid to answer the phone during the school day.
Michael waited half a year for a specifically recommended computer program; he ran away from PE classes that were too hard for him. He told me in the mornings that school was closed that day so he wouldn't have to go. He would have gone for almost six months without speech therapy, his most needed therapy, because there was no one on campus to provide it, and no one told me the therapist had left.
Despite extending myself and volunteering in classroom projects, I saw that teachers in the general education classes didn't really expect much of him, and teachers in the special education classes, who had very little support, were overwhelmed by their many students, each with different issues. God bless them all for trying.
It dawned on me that I have to give up my dream to have Michael always fully included to give him what he needs. Our ideal was not working for Michael. In fact, it was hurting him in every way. Socially and academically, our child lost two years of his life.
As any good teacher knows, you've got to step back and take your cues from your students. Michael was telling us what he needed. So we began the next phase of the journey, the search for the right place, not the ideal place.
Finally, we have done it. The Bridgeport School, a non-public school with funding from the public school system, is for children with special needs, part of The Help Group, and its wonderful teachers expect everything from him, and because they expect it, they're getting it.
The first four months were really hard; Michael had to adjust to his fourth school in two years. But the phone calls home stopped right away. The teachers knew what they were doing and how to handle "determined" kids.
Now, once again, Michael's confidence is coming back; his smile is coming back; he wants to go to school, and his sense of independence is growing.
Mine is, too, by the way. For the first time in a long time, I trust the people to whom I've entrusted my child; I see a light at the end of the tunnel.
I think some day my life might not be all about Michael's day, and Michael's homework, and Michael's behavior and might get back to being about me, as well, again. Selfish? Noninspirational? Maybe a little. But I gave up "me" 11 years ago in order to make life OK for Michael and Jason and Mark.
It's getting to be about time to get me back. But that's a story for another time.
Because of Michael's sense of well-being, we've also been able to bring him "home" again, back to our Temple Israel community for religious school on Sundays. As it turns out, he is probably the most spiritual member of our family: He loves to sing "Adon Olam," can't wait for his bar mitzvah, is empathetic to those in pain or need, loves the tzedakah projects at school. And his hugs are truly healing. Ask anyone.