Inclusion – is it everything?

This past Fall, my son suffered a very intense series of what can only be termed panic attacks, attacks that led to psychosis and his very first hospitalization. His school team was sweet, supportive, and eager to learn — but nothing we changed seemed to settle his system. One Monday, my husband was called to pick him up from school and found him crouched under the principal’s desk, blank & shivering, rambling about lights that were going to fall on him at any moment. Over the course of that first six weeks, he went from full inclusion with minimal supports to a self-contained classroom to a private day school upon hospital discharge.

He was still in the hospital when the subject was broached with us — an ominous email that stated a need to “discuss placement”. I work in the field. I know what that means. I was angry. I felt pushed out. I felt that someone, somewhere cared more about what other parents would say than about what my son needed. It’s a knee-jerk reaction, and it was reinforced by several others — an advocate, a social worker… The schools, both public and private, could talk about the end-goal of transitioning back all that they wanted, but we all knew that rarely happens. Once you’re out, you’re out. I didn’t want my son to be out.

On the other hand, my entire career has been in these “segregated” settings. I’ve only taught students, thus far, who receive services in self-contained settings. Half of my career was in a separate, specialized (public) school. When I was in graduate school for early childhood special education, I was the lone voice arguing against switching all early childhood programs into a full-inclusion model. Some children need a higher level of supports, I said. Some children need specialized instruction at an intensity that cannot be delivered in a general education setting. Some children would simply become overwhelmed.

Here I was, though, facing the fact that it was now my son who was overwhelmed. I channeled all my disappointment into finding the “right” private day school, out of the extremely limited options that existed. I talked about how it would be for only this year, and then perhaps Little Man would come back and repeat first grade at his home school, or even in a self-contained setting. Halfway through the year, I realized that this was not going to happen (admittedly, our family therapist had been saying that for months!). He’s not going back next year. He probably won’t go back the year after, either. He may never go back. And not because the school doesn’t want him (though they really, really don’t), or because he’s not ready. He won’t go back because it’s not the right environment for him.

This whole year, while he’s been in private day school, we have taken him to a kindergarten inclusion religious school on Sundays. It’s been one of the most important things to us, and not purely for religious reasons. It was his only time in an inclusive environment. It was the only thing that was remotely like public school. It seemed that we had to keep going, because INCLUSION MATTERS(!!!) and “segregation” is the enemy. Since leaving the hospital, we’ve had these beautiful family moments, these connected moments, these quiet moments that stick in your heart. This weekend was not one of those. Little Man was angry. He was irritable. He bit myself and Husband multiple times. He threw things. He screamed. He needed a PRN medication for the first time in weeks. I decided this morning that he would not be capable of handling Sunday School. Once we told him, it all stopped. All the anxiety, all the fear — it just dissipated. We had that beautiful day — playing ball with his cousin, giving hugs to family members, and doing some gardening in the yard. You know, originally, he loved Sunday School. The other children are more mature now, though, about to be first graders and the demands are higher. Today, he told me that Sunday School makes him nervous, because he’s stupid.

I was reminded of two things, two very important things, that I read in Soloman’s Far From The Tree recently, I think by the same mother. If I remember correctly, her daughter is in a self-contained setting, and her closest friends all have the same or similar disabilities. When asked about this, she says that children “need role models, but they also need to be able to be a role model.” Little Man needs to be able to be a role model. It’s wonderful to have language models, social models, but it’s also important to not feel overwhelmed and “stupid” every single second of the day. Her second point, equally apt, is that her daughter’s best friends are going to come from her peers, her true peers, not her age-peers. You cannot expect a 17 year old to be true best friends (I’m in a crisis and I need your help!) with someone who is developmentally so much younger, she says. I see this with Little Man, who had no friends in his first grade class, but is slowly forming relationships at his new school. He needs friends and he needs to feel competent. He is in a place that gives him both. It’s not a public school.

And isn’t this what parenting is, after all? Learning to set aside our own expectations and entrenched philosophies for the individual needs of our child? It happens to me, again and again, as I realize that my dreams for my child are not necessarily his dreams for himself, nor are they what make him happiest in that deep, soul-filling way of contentment. Inclusion matters, and it is the best thing that could happen for some children. It is one of the best things, in my opinion, that has happened to our world. Neurodiversity is something we are all enriched by. That doesn’t mean it’s right for every child. It’s not right for my child. I’m learning to be okay with that.

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