Our son, Scott, is 9. He was officially diagnosed with autism about a year ago, but had the “temporary” hold of a diagnosis of “Pervasive Development Disorder – Not Otherwise Specified” that expired on his 9th birthday. Basically, they knew there were issues but wanted in-depth testing, so for about three years we had this placeholder that allowed us to seek IEP’s in school — which is exactly what we needed — with an expiration date.
But, we’ve known. We knew he had Autism Spectrum Disorder, whether we had received the written and official diagnosis or not, and we researched the disorder for, literally, years. Being so widely researched, we have determined to focus our parenting on two questions:
- Is it disability…
- …or is it discipline?
When it comes time to force an issue or concede an issue, we have to constantly ask ourselves what is causing the issue — is it the stubbor n willful tendencies of a 9-year-old, or an autistic brain on overload? On top of that issue, we have to decide what battles are worth fighting and winning, and what battles do we just leave alone — because in the end, what our objective with him is to teach him to cope with the
normal (political correctness doesn’t allow us to use terms like “normal”) neuro-typical world out there. There’s going to come a day when he walks out of our home and begins to live away from our shelter and comfort, and he needs to be able to function when that happens.
One issue with him is that he is extremely interested in ONLY what interests him. Nothing else. At all. Ever. Period.
Take for instance, Playstation. We have one. It is only played on the weekends. Which means that all weekend long, no matter what we might be doing, Scott can only think that what we’re doing is taking away from Playstation time. This is why we only allow it on the weekends — otherwise, the obsession would overtake any and all schooling and weekly activities. He participates in other things, he even enjoys himself, but in the background of his mind, there’s this ticking of a clock that is counting down wasted Playstation seconds.
Last week, his school had spirit week. Monday was Crazy Socks Day. Scott wasn’t well Monday morning, so he didn’t go to school. Tuesday was Hat Day. Scott insisted that he didn’t want to wear a hat, but I put one in his backpack just in case. When I picked him up from school, he made a point to mention that it never left the backpack. Wednesday was “Twin Day”. Johnathan, our 7-year-old, had planned Twin Day for a week. He had the clothes picked out that he and Scott would wear and was so excited about it.
Wednesday morning, Scott refused to dress up in twin day clothes. Flat out burst that bubble of Johnathan’s. I told him that he needed to participate so that his brother could do it. He replied with, “I don’t care about stupid twin day.”
I said, “It isn’t for you. It’s for Johnathan.”
“Well, mom, the truth is sometimes I don’t care about him, either.”
I’m sure that this is true for most siblings around the world. The difference with Scott is that there is no filter. He doesn’t like something, he’s going to say it out loud. And, the truth is, he probably doesn’t care about Johnathan sometimes. That’s fine. So, I had to take a different tactic.
“If you don’t get dressed then you lose Playstation this entire weekend. You don’t have to wear twin day clothes, the choice is yours. Clothes or Playstation. You choose.”
I’m sure you can guess what he chose. And, with the attitude exhibited during pictures, and knowing how much he could dwell on what clothes he had on and let it spiral to a full-blown meltdown, I told him that if I got a bad report from the teacher for the day, he would lose Playstation for Friday after school.
I’m sure there are parents out there who are cringing at the thought. Why force him to participate when he clearly didn’t want to? Obviously, you’re being authoritarian. Let the poor boy wear what he wants because life is hard enough for him, isn’t it?
Yet, in the real world out there, sometimes, you have to do stuff you don’t want to do to please the people around you who love you and whom you love. Period. Even if you have to dress up like your little brother and slap a smile on your face for the camera, you do it. Because they’re going to sacrifice for you, too. And when you’re a
normal neuro-typical kid with an autistic brother who suffers from OCD tendencies, your life is full of sacrifices and concessions for your sibling. Occasionally, they need to sacrifice for you.
This was where those two questions I mentioned before were answered:
- Was it discipline? Maybe. Maybe some stubbornness that just naturally comes to 9-year-olds was coming out. It’s entirely possible that was the driving force.
- Was it disability? Maybe. Maybe the idea of this whole “Twin Day” thing didn’t make a lick of sense to him, and he couldn’t fathom why anyone would want to do something so absurdly pointless. What a waste of effort and ambition.
Either way, he needed to do it. He needed to cope with the fact that occasionally we do pointless things to please people we love, even when we don’t understand it or maybe even don’t want to do it.
And, he did it. And that kid picked up that Playstation controller at 2:35PM Friday afternoon and had the time of his life playing with it. Because, at that point, the ability to play with it felt like a victory. He KNEW he had sacrificed in order to have the option to play, so it was more exciting than usual. He felt like he’d slain that dragon and that he’d won a favor that he would relish.
As his parents, we know just how close to the truth that actually is. He’d slain a dragon. He put on a shirt and a pair of pants that he did not want to, and he survived it. He made it all the way to bedtime in the outfit and he came out of it still alive and completely unscathed.
Now, the next time a similar scenario rears it’s pointy head, we have something on which we can set an example, to remind him that it is definitely okay to sometimes do what is hard if the end result is that your brother smiles broadly for the picture. Because even if the truth is that sometimes you don’t care much for him, he wanted to dress like YOU for Twin Day, because you’re his big brother and there wasn’t anyone better in his mind he’d want to dress up with.
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