Autism Watch: 2007

This week, I tried to enroll my son in an event where I thought he’d be okay. He knew about it prior, and wasn’t totally opposed. He’d stated a couple of demands, which were do-able, and agreed to go. I knew it’d be a stretch, but he’s done it before and while we never quite know what will happen on The Big Day (in front of an audience), no disasters. I knew we’d have to pick our battles while there, and not sweat the small stuff. I was officially involved, and planned on being accessible to him the entire evening. All the plans were set, and things should go smoothly, right?

Not so much.

As soon as we arrived and ds saw a lot of other kids running around, both young and old, his ADHD side came out. Big. Time. An instructor stepped in, wonderfully so, and got him back on task, though it wasn’t without some dancing on his part. Dancing is a battle I won’t fight; he wasn’t disruptive to the other kids, he wasn’t touching anyone else, and he was still doing what he should have been. But that’s when it went downhill.

Maybe, because I was in a place where I knew most people knew about him, a place where you wouldn’t expect judgmental stares, I got comfortable. Maybe I assumed people would be understanding, based on the environment and our longterm involvement with this group. Maybe I just figured that kids were kids, and parents would be just having fun watching their children in this event, and not really worry about someone else’s kid. I don’t know, but in any case, I was wrong.

It didn’t take long at all before I saw a few gestures. A few stares. The stares lengthened when my older dd tried to step in and help. Personally, I think she saw the stares and glares before I did, and her defensiveness came out, so she joined in to play with him and downplay (pardon the pun) his behavior, and I love her for that. But, I don’t think it helped. The stares continued. Sadly, I even saw a couple looks of total disdain, complete with scrunched eyes and curled lips, as though someone had brought an unruly poisonous naked snake to a mouse party.

And that was just the beginning.

We continued on with more preparation, and ds refused to cooperate. In fact, he hid under desks, chairs, and any other piece of furniture an adult couldn’t fit under. I resorted to calling dh and handing my very expensive new Smartphone to ds so dh could talk him out. He did do that — ds eventually came out — but by then, we’d missed most of the practice, and more and more people were walking by staring. I told ds he didn’t have to participate. He relaxed and started running around and smiling (noisily) again. And that was that.

Me though? I had to remind myself a few times that I was not going to lose it in front of people, particularly people who looked at my son like he was a wild out-of-control brat. I felt embarrassed, and then immediately ashamed of that embarrassment — why should I care what a bunch of people who are ignorant of my son’s issues think? I felt angry. How dare people look at him that way. They have no idea exactly how far he’s come, what an amazement he is, what a miracle. And how dare people be hypocritical, to look at my son, in this particular building, without the love and compassion and tolerance we’re taught to have?

For a few minutes, I felt the same helplessness and lack of control I felt in ds’s earlier years. The ‘what do I do now?’ panicky feeling, where you want to grab your child and run home because you have no clue what to do and you just want the event over with. Four years (to the week) after his diagnosis, and those moments apparently still come.

Thankfully, we have friends there. Their support curbed some of my anger and frustration. They expressed love for my child, and told me to ignore those who didn’t know him. They spoke the truth, but it can be hard to do. My husband reiterated it when I returned home, reminding me that WE know ds, and if ds is happy and behaving as we know he can or should be, that’s all that matters. I need to let go of making ds do something just because ‘normal’ kids do it. If he’s happy, I need to not worry about him missing out on something. Sounds so easy, and makes so much sense, but there are days it doesn’t just fall into place.

Later that evening, ds sat at his new desk in his new room, in his new red flannel soft polar-bear-covered pajamas, doing his math homework. His hair was brushed and curled over his collar. He declared his tiredness, and climbed into bed, after I fixed the proper blankets into their proper places. After a sweet goodnight prayer, where he prayed that I would have a good day and thanked God for all he does for him, he was asleep in minutes.

What a doll. I am so blessed. He’s an adorable, loving, smart doll who just happens to be hyper and have social and communication issues and meltdowns that’ll put hair on your chest. And he’s my doll. He’s my gift given to me to raise, and dh and I are the only ones who know how to do that. So for those who want to stare, go for it. Your actions aren’t just obvious to me, but to others. They speak volumes. I may not know your name, but if you think about it, you know even less of my son that enables you to be so disgusted or turned off by his behavior. (And for the woman who put up her hand to keep him away from you — I don’t even know what to say.) Everyone out there with children, it’s just the matter of a funky gene or a vaccine or some other environmental toxin that separates us from you. It’s not our parenting, and it’s not my child’s intentional behavior. It’s as much of my son’s personality as rudeness or lack of tact or judgmental behavior is to a ‘normal’ person.

And in the end? I’ll take my son’s behavior over that. I’ll also continue to be so proud of who he is and what he’s become. I’ll refrain from waving my hands to quiet the room to educate, when it’s really no one’s business, and instead, I’ll save my time and energy to continue to help my son. I refuse to let the issues of others make negative changes in my life. I can’t say that I am not disappointed. There are places you don’t expect that type of behavior, and this was one of them. I can’t say that I don’t feel like autism awareness has a LONG way to go — people out there still think it’s an excuse, or it can be medicated or disciplined away. I try to blow off what I see as selfishness, a refusal to realize that one’s own children aren’t the only ‘perfect’ kids out there, or to acknowledge that one’s own style of parenting isn’t the only way. And I can’t pretend not to be a little sad that people are missing out on the gift that is our children. I won’t let their negative energy make me miss out on it either. Every day with our kids, perfect, ‘normal,’ ‘neurotypical’ or not, is a gift. All kids are miracles. We’re all in this world together, and loving thy neighbor works a lot better when we move past the stares and instead work on acceptance — if we can’t accept small children, how can we really accept any adults.