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He’s been misled

We had a med check with Little Man’s psychiatrist the other day. He’d been doing fine all day, and held his own during the appointment, somewhat responding to the doctor’s questions (he really has never bonded with his psych and I really need to find him a new doc). We got home though, and the wheels came off. His breathing escalated, even while doing things which normally calm him. And then he started crying. It wasn’t a meltdown cry, it was a heartbroken cry.

Little Man knows he’s autistic. He knows what that word means. He knows it means he’s different. We don’t hide his diagnosis from him. He is ten years old, and smarter than a whip. Even before he had the word, he knew he was different. So we talk about it, and what it means.

His words to me Tuesday afternoon were, “I feel I’m being misled.” I asked him what he meant, how was he being misled. He just looked at me and said, “This is always going to be hard, isn’t it?” My heart just broke. It is hard right now. It has been really hard the past ten months. I fully believe it is a combination of things…needing the right medications for him, getting the right services at school, the beginnings of surging hormones in his pre-teen body, increased social awareness in his peers. I fully  believe it will get easier for him. We are already in a much better place than we were three months ago, and an infinitely better place than we were last November. He will have some big speed bumps between now and adulthood, but I have evidence there is reason to hope.

We talked about those hopes, those beliefs. I am honest with him, as honest as I can be, not knowing exactly what goes on in that mind of his. I told him he will probably always have to consciously work at some things, but that it will get easier. That work will become second nature. It will be different than neuro-typical people experience, but it will be easier than it is now.

I think, from what I can gather from our conversation, he thought he would get better, be normal, if you will, not always be autistic. Poor boy. He will get better, be more capable of handling things, but he will always be autistic. He will always have to work harder socially and emotionally. That is by far one of the hardest things for us both to take in.

We’ve come back to that conversation twice since Tuesday afternoon. He had a rough night Tuesday night, with lots of tears. Some days are just like that. He is much more settled now that we aren’t traveling and don’t have lots of guests in our house. He’s much calmer knowing we are home for the duration, with the normal routines in place. He has started thinking about the upcoming school year, asking if I knew who his teacher will be, and if we can go shopping for school supplies (slow down there, buddy, we have another month left of summer). I know he’s working through this, processing in his way. It will come up again. That’s how he does. Trust me, I wish there were a magic pill or treatment that would make him better immediately, rather than having to face years of hard work. But it’s not to be. And we are where we are, we do what we do, he is who he is. I was struck by the words Michael Sam quoted from Arthur Ashe in his acceptance speech at the ESPY’s last night, “Start where you are. Use what you have. Do what you can.” Arthur Ashe wasn’t talking about autism when he said those words, but we are choosing to take them to heart. We are where we are. We will use what we have to make Little Man the best he can be. And we will do what we can given the gifts we’ve been given.

4 thoughts on “He’s been misled

  1. I can’t imagine. My heart breaks just reading that he asked if it was always going to be hard. Give him a squeeze from me:-) hugs. I’m rooting for you. I know you are going to make it through.

  2. This makes me wonder when my son John might have had such thoughts. The first semester of his freshman year was SO hard. He was really happy when we switched him to the certificate track from the diploma track. I have two or three bad days over that, so I really wonder what John has been thinking. Thank you for helping me see I need to check in with him more often.

    • Sometimes it takes my guy longer to articulate what’s in his head but I can usually tell when he’s processing something. Letting him come to it and get it out in his time gives him confidence.

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