I was leaving for work the other morning, walking to my car parked in the driveway, when I heard something that instantly got my attention. It was coming from the bus stop for the middle school kids, and it sounded like an argument or fight. I listened a few more seconds and realized that one kid was loudly “performing” while the other kids stood in a semi-circle around him, laughing, ganging up on him. My PTSD kicked in, my heart raced, and my blood ran cold. Neil had left several minutes earlier, riding his bike the opposite direction to the high school. I knew that the situation at the bus stop had nothing to do with him. But my body remembered how it felt, four years ago, to know that it had everything to do with my son. That he didn’t know how to interact with his peers so he “performed” for them, acting out a scene from a movie. They laughed at him, and he became agitated and angry, which made them laugh more. As a parent, it was horrible to witness. My instinct, four years later, was still the same as when it was my own child being targeted. I started to go over there to lecture them about not laughing at someone who communicates differently. But after I took a few steps, I realized that the kids at the bus stop were not doing what had been done to Neil four years ago. The louder kid was trying to engage them in playing along, and they were interacting, laughing together. It wasn’t what I thought it was. It was okay. And, still shaking with adrenaline, I turned and walked back to my car and drove to work, trying to contain the sobs in my chest.
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We recently had Neil’s annual IEP meeting. It was a big one, now that he’s in his junior year of high school. Yes, you read that right – junior year. We’re in heavy transition mode, moving into the “later phase” of transition as described in The Autism Transition Guide: Planning the Journey from School to Adult Life (which is a fantastic resource). We’re almost there, people, and I’m trying not to freak out about it. This is what we spend all our time, energy, and effort preparing for. This is where the money meets the mouth. The moment of truth. And we’ve got just two school years left. There’s a lot to do in little time. The “good” news is that by now, most of Neil’s IEP goals are executive function-based, as opposed to academic or even social. His social skills class has dropped down to twice a month, and I wondered if it was enough, wondered if his social interaction at school had really progressed to such a low-need level to not even necessitate an IEP goal, even though I agreed that the executive function goals are paramount at this stage of the game.
This past Friday was the high school’s Back to School Open House, and Neil argued that he didn’t want to go. “I spent over six hours there today!” It was the end of a long week, and I didn’t want to go either. But it’s incredibly important for special needs parents to attend Back to School Night, especially when your child is older and has multiple teachers. It’s a great opportunity to touch base with those who attended the IEP meeting and to make contact with those who didn’t. And I remembered that in previous years it had been awkward discussing Neil’s strengths and weaknesses with him standing in the classroom. So I agreed that he didn’t have to go, and he watched TV at home while I, hoping he wouldn’t have a seizure or light the house on fire in my absence, went to the high school alone, picked up his schedule and a map, and began wandering the halls to find his classes.
I have a pretty standard thing that I say to his regular ed teachers, which is basically to introduce myself, make sure they are aware that Neil has an IEP for autism, and tell them that sometimes, due to his autism, Neil will answer a question or make a comment and get off-topic with an idea that he’s passionate about. I tell them that usually a gentle redirect, to remind him of the topic, will suffice. I tell them that if they have any questions or concerns to feel free to contact me, and I thank them for their work with my son. You’ve got to keep it short and sweet because there are other parents waiting in line to do the same thing. But it’s so important to put in the face time, and so worth it.
Finally, I found each of his classrooms. The teachers who had attended the IEP meeting were genuinely excited to see me and tell me how well Neil was doing and that they were very happy to have him in their class. That comment alone, which I usually only hear from his special education coordinator and social skills moderator, was enough to generate a lump in my throat. But then, when I said my spiel about him sometimes getting off-topic in class discussions, not one, not two, but all of his teachers got a slightly confused look on their faces and said, “Everything he says is right on topic.” For a split second I thought, my kid? Really? They’re not confusing him with someone else? And then I casually smiled and said, “Great! I’m glad to hear that’s not an issue for him anymore!” But inside I was vacillating between wanting to do cartwheels and trying not to cry from sheer joy. He’s on topic! They’re very happy to have him in their class! That’s four years of social skills classes at work – that’s what that is. And fourteen years of speech therapy. And nearly seventeen years of believing that it would be possible, that one day he would fit in with his peers, still different, but greatly appreciated for who he is.
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Some time ago, my wise friend Elizabeth posed this question: “If you could go back, what would you have told yourself right after receiving your child’s diagnosis?” My first instinct was that I would tell my twenty-six-year-old self, who had a seventeen-month-old and a just-turned three-year-old, preverbal child newly diagnosed with autism, “It will be okay.” I had other things I wanted to say, like “Ask for help,” but mostly, I just wanted my younger, scared self to know that I would get through it. And yes, almost fourteen years later, there are still plenty of concerns for Neil’s future and many stressful things I need to do to facilitate everything. But for the most part, it’s okay now. What? Do I really hear myself daring to say those far-reaching words? Part of me says that time will tell. But another part of me says that no matter what happens, whether he’s gainfully employed or living independently in adulthood or not, it will still be okay. It is now, and it will be. That much I know. That much I still believe.
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