From time to time you see online one of those “what parents of children in the Spectrum want you to know.” I’ve read them all. I agree with some of the stuff on there; we want you to know our children are not unintelligent, unaware of what is being said about them, blah, blah, blah. That is a blah, blah, blah from a place of love and respect. I don’t want you to think I don’t appreciate what people are trying to do with these lists and essays.
There’s stuff I’d like people to know about J, he of the firm placement in the Autism Spectrum, that doesn’t quite “fit” the usual pattern of these lists.
- J is a pain in the ass. I love him, but this is true. When J wants what he wants, J is a total hard-ass about it, and it’s only through the lavish dispensing of patience and firm negotiation that we can get him to not be a total asshole about things he wants NOW.
- When J doesn’t like you, he will NEVER like you. He will, at best, tolerate your presence, but he will not last very long, and he will make sure you KNOW he doesn’t like you.
- We will say “oh, it’s only he gets used to you.” We will be lying.
- J’s concept of privacy does not extend to other people. He WILL walk into the bathroom while you’re on the toilet, and he will rush you to finish.
- Yeah, he knows how to unlock the dinky indoor locks with a butter knife. He will also use his thumbnail.
- While incapable of reading a calendar or understanding the concept of time, J will know when it’s not a day for Dada to be home. If we look too relaxed while having our coffee and watching Reading Rainbow (don’t judge us…the news was too stressful so we got rid of cable and LeVar Burton makes us happy,) J will get irritated, march upstairs, pick an outfit for Dada to wear to work, and then unceremoniously hand him the can of shaving foam. This is, in J’s world, the equivalent of handing the Black Spot, or a fish wrapped in newspaper. It’s an announcement. It’s an ultimatum.
- J’s sartorial sense is either very good, or he has memorized Dada’s work combos over the years. He never picks anything that clashes or looks like it’s meant to be worn for an occasion other than work.
- If J doesn’t want to go out, J will not go out. You can tempt him with anything you can imagine, but he will not budge. Even if you’ve made plans and are really excited about them, you will find yourself with egg on your face…the kid will not budge. He’s not interested in making US happy; he just wants to be happy. If that means he gets to screw us out of an outing, so be it.
- J’s single-mindedness can be truly irritating. This is made worse by the fact that, at times, he refuses to communicate when he’s obsessing about something.
- There are moments when being J’s parent is truly exhausting, and we yell at each other because we cannot yell at him.
- Some of the quirks can really drive us nuts. The flicking of the fingers. The tapping of the head. The band-aids. The turning the lights on and off three times, disorienting us old people who tend to suffer from vertigo…
- J cannot abide seeing the cell phone charging. It has to be putawayputawayputawaynownownownow… At least he doesn’t do it while out and about to other people…
The truth, and I know this sounds horrible, is that he pisses us off once in a while. Like him, we have our good and bad days, and there are times when we are just not in the mood to do what has to be done. We still have to do it. We do it while gritting our teeth. We do it while cussing under our breaths. J knows when we’re angry. I think it’s fair that he knows, even if he cannot always understand it. I think that J deserves to know that he is as much of a human as we are, and that these difficult interactions are part and parcel of the whole gig.
J is persnickety. J is demanding. J is obsessive compulsive, and annoying. He wants attention, and then he doesn’t. He wants affection, and then he doesn’t. He is careless with us; he loses his patience with us (sometimes very quickly and for no apparent reason,) and he hurts our feelings. He always thinks he’s right, until he realizes he’s been wrong, and then he quickly forgets it.
We don’t know, for a fact, that J loves us. That’s the nastiest bit of all. We know he is used to us; we know he feels close to us. We know that J recognizes us, and he feels bad when we’re upset or sad because of him. We know he loves to hug us, and he likes our fish kisses and displays of affection. We know that he trusts us, and that he likes -for the most part- having us around. Does that mean he loves us? I could go into the whole Fiddler on the Roof/Tevye and Golde thing and sing “Do You Love Me?” I could argue that love is different things to different people, and that to J it is something along the lines of what we see from him every day.
I would like to tell you that it doesn’t crush us to think that we are simply constants, and if we’re gone we can be replaced. We like to think that, like us, J spares a few moments each day to be thankful for the chance to be a family, or that he misses us and is glad when we reappear in the scene after being gone a while. The truth, my friends, is that we don’t know…
What I want people to know, for the most part, is that -yes- J fits into all those lists that say he’s special, and has abilities, and sees the world differently…blah, blah, blah. I also want people to know, nay, UNDERSTAND that this shit isn’t easy, and that we’re human and fallible and short-tempered at times when it’s most inconvenient because it doesn’t help matters.
Yes, J is awesome, and lovable. But he’s also this complex human being who -d-uh!- has huge issues trying to interact with us. Even WE think “shit, does he have to be so…argh!…all the time!” It’s not pleasant sitting on the toilet in the dark because he wants the lights out NOW. It’s not pleasant sitting on the toilet with him walking in and demanding action NOW. It’s not pleasant that he feels entitled to invade our privacy, take up our space, rule our life, alter the course of plans, days, you name it.
It is what it is. We love the kid, but there are moments when we hate this situation. In an alternate reality, J would be living by himself, not wanting to deal with parents who sit on toilets, or make plans that HAVE to include him. It’s not that we didn’t raise him right…it’s just that it is what it is, and no amount of training completely alters the “what it is” of it…seriously. At most we’ve managed to get him to not open the bathroom door AS abruptly. Or we’ve managed to get him to wait (after yelling “I’M ON THE TOILET” so loudly that the neighbors know what we’re doing) outside the door, only to open it and find him RIGHT THERE…FACE TO FACE WITH US…
We love, respect, admire our son, but he can definitely be a hugely self-centered jerk sometimes… SO, yeah, he can be cute and charming, and funny, and entertaining. He can be uplifting and inspiring, and awesome and warm-ish. He can be affectionate (it’s usually because he wants something…how like every other kid is that?,) and he will hug us (sometimes a little too hard,) but…
it is what it is. Not a very uplifting list, but…sincere? Honest? Slings and arrows come my way…