Onus

Second grade is in the books for my Boy, and now that it is August, third grade is just around the bend. This was a profoundly difficult year for all of us, as we struggled with growing pains and loss. Pete and I can try to use all of the tools we have as "typically-developed adults" to try and grapple with what this year has thrown at us and even with that advantage, we usually fail spectacularly.

PJ, however, does not have that advantage. While he has all of the feelings, fears, hopes and needs of a typically-developing 8 year old, Autism has left him without the tools to properly convey those things. There are a million amazing things about our Boy that float to the  top for the people who know and love him but often, his difficulties negate those things to people unable to see differently.

Let me say this: we are not trying to gild a lily here. The things that make life hard for PJ can, in turn, make things hard for the people around him. PJ can be aggressive, and it's not okay for the person on the receiving end of that. PJ has been aggressive towards peers before, and I wear every incident like a scar- who is ever okay with being the parent of "that" kid? He can use language that sounds scary when he doesn't have the words to describe what is bothering him. PJ doesn't have the social skills that make approaching a peer easy for him, despite that fact that connecting with peers and making friends is something he desperately wants. Instead, his behaviors may come across as off-putting or rude, and without someone to prompt PJ on how to approach someone, the connection is missed.

PJ had an amazing experience at day camp this summer. He tried out new things, met new people. He was welcomed by the camp staff and community- a strong special needs program meant that he wasn't just tolerated, but made a part of the group. At family night a few nights ago, we ran into staff who knew him, each with something positive to say. It was inclusion the way it should be, and because of that, PJ was able to feel like he was a part of something.

Still, there were difficult moments. Towards the end of camp, one of PJ's more annoying idiosyncrasies started getting on the nerves of another kid, who got in his face. This is something that happens to every kid, but PJ had no idea how to handle it and quickly dissolved into a meltdown that resulted in his having to deescalate indoors and miss free swim, his favorite part of camp.

This is not to say that it is okay if PJ hits another kid, or uses language that is frightening. There aren't words for how it feels when I get a call that PJ hit a peer. When we are in those situations, the best we can do is to redirect PJ's behavior and teach him an acceptable replacement behavior. We also have to understand why the behavior happened. Was he scared? Trying to engage the other child? Provoked? Understanding the antecedent is key as well, and means that we often have to be three steps behind and two steps ahead at the same time. We do this not just situationally, but also in at-home therapies and social skills training. It is more than just a disciplinary reaction- along with that (and yes, we do discipline our child) there has to be time taken to not only let PJ know not only that the behavior is unacceptable, but HOW to behave instead. By "how," I mean literally going over the situation with him, and telling him the words to use and ways to act in order to replace the impulse to behave negatively. It's work. There are hours upon hours spent at home, trying to teach PJ how to behave like a typical child. When your child comes home from school and hops on his bike or zips off with neighborhood friends, PJ is at the table in our dining room, trying to learn how to earn that right.

I'm certainly not ready to just scrap those therapies, but I have to wonder: Why is the onus of acceptable behavior taken on completely by a child with a disability? We work so hard to break PJ of those Autism idiosyncrasies and negative behaviors that put others off, but who is working to help our typical children gain tolerance, patience, acceptance? Why is the idea of having someone meet PJ in the middle so foreign? Frankly, that viewpoint underestimates kids who, more than anyone else, are able to see what is special and interesting about my son.

In most schools, inclusion is still a tricky thing. Some districts still completely eschew the practice, preferring to place our children in self-contained classrooms or schools completely dedicated to serving kids with special needs. Other schools offer some form of inclusion, but it is a club with an application process, and only when a child is working as close to "typical" as possible are they allowed in. I have heard other parents say that a child with a disability is a "distraction" or time suck that can funnel resources away from other children.  This is an attitude that suggests that our children are not equal, and that some children are more deserving of an education than others.

PJ is a child, no more or less worthy than another. Yet so much of the focus on him zeroes in on what his difficulties can take away from his peers, rather than what his many, many gifts can offer. And I get that not every kid is easy. It takes work and resources to make sure kids like PJ have their needs met while also having access to the same type of learning landscape that all children are entitled to. Studies continue to show that both typical and disabled children benefit from an inclusive learning environment but, in terms of implementation, public schools remain very far from that goal. It's broken system, one that relies on our differently-abled kids alone to close the gap.

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