Judging by movies and documentaries we’ve seen, books and news articles we’ve read and the teeth-rattling anger that stems from the whole “it’s the vaccines, it’s not the vaccines” debate, our Autistic child is not like other Autistic children. He’s no picnic, mind you, but it seems that -within the widely-documented characteristics of the spectrum- we got very, very lucky. Not that it feels that way all the time, of course, just from time to time when we’re hit by random, spontaneous jolts of J-ness.
What I am saying is: we have yet to figure out if it’s that J is not the poster-child for “Autism is catastrophic for a family” or if our attitude is “blasé” about the whole thing and we navigate with a minimum of crashing into the rocks. There are days when we say “our son is autistic” with more gravitas than others…is it us? Are we nuts? Are we like that girl in Happy G0-Lucky with her absurdly positive spin on life? She irritated the bejeezus out of me so I hope I’m not doing the same to others. Are we like one multi-pronged Pollyanna? Do we take this crap too lightly????
Why am I mentioning this now? I feel like the boy who cried wolf, that’s why. I tell people how difficult J can be, and how I don’t wish this on anyone, but I don’t look like the steamroller just flattened me to a pancake. We explain the difficulties that we encounter, but even we think that they sound fairly silly in the great scheme of things. My husband has turned around, on a difficult night when J’s been anxious or angry or sleepless or demanding, and says “should we have a drinking problem or something?” He says this half-assedly…with a scone in one hand, a cup of coffee in the other and with a bewildered look that says “this has been rough, but otherwise I feel pretty awesome.” When people ask “how are you doing?,” we pause briefly and make a quick assessment of what things have been like lately and, honestly, the answer is 99.75% of the time: we’re great!
Last night, out of the blue, J marched downstairs with a jigsaw puzzle and parked his fanny in the family room. No, he didn’t want help…he was just, well, choosing to do something in a part of the house that he usually reserves for weekends, holidays and laundry-folding. Why should any of us be surprised about this? (That’s what the look he gave us implied.) The Great Gonzo sidled up to me and whispered “is he confused about what day it is?” in a tone that indicated “I wanted to watch The Walking Dead on the DVR and he’s cramping my style.” My husband, when I went upstairs to the kitchen, asked “is he feeling OK?” in a tone that indicated “I thought we were watching The Walking Dead!” I was thrown-off, yes, but there was something comforting about this random act of normal adolescent putting-the-kibosh-on his brother and dad’s plans for the family room. In truth, J was negotiating like a pro; he had asked for noodles and we had dismissed him, telling him “you can’t have them until later!” in a tone that -to J- meant “we’re too busy and involved with ourselves right now.” So J decided to Occupy the Family Room in a Gandhi sort of way: I am going to sit here, be productive, and wait until you realize that my presence is not unimportant, that I too have the power to achieve that which is important to me, and you can whisper all you want, but I’m not going anywhere until my needs are met. In a nutshell: our son has learned that stomping his feet, screaming, crying, threatening to hit his forehead with his ham-sized fists and growling is a lot less effective than we’d led him to believe years ago, and this time he didn’t even consider that route…
The negotiations were calm. J expressed his wish for noodles one more time without lifting his eyes from his puzzle or pausing the activity. I acquiesced calmly, and the other two gentlemen involved set in motion the process of fulfilling the request. Half an hour later, J was done, heading upstairs for his bath (jigsaw puzzle completed, disassembled and stored in its box,) and The Walking Dead continued its march.
What are we doing wrong? Why aren’t we bogged down anymore? J’s no less autistic than he was when he was younger. He’s no smaller or lighter. He still has the power to cause mayhem when he’s so inclined. How is it that we’re doing ok? The Great Gonzo will, on occasion, break into the Gopher’s dance from Caddyshack while singing I’m Alright. Have we accidentally given our children some sort of positive grasp on reality? Have we given them the illusion that, yes, things will be ok if one just lets them be ok??? Are we insane???
I fell asleep wondering if I’ve completely screwed up the whole thing. Am I not too worried about things that should be weighing me down? Shouldn’t I be researching immunizations, contaminants in food, special diets and supplements? Should I be trying to change the way things are? Am I too comfortable with this status quo of ours and has this lulled us into a false sense of security?
I wish someone would tell me, in all honesty, if they have a funny, gregarious, jovial, jolly autistic kid in their household. I know J’s teachers and mentors at school are dedicated and loving people who want what’s best for him, and who want to motivate us all, but does everyone consistently get “he is so funny. He is a joy to be around! He made us all laugh today, and he brings such spirit to our classroom” in the comm book from school? I mean consistently! Every single week, more than twice, I get “oh, he did such a funny thing, and he was laughing and laughing.” The bus drivers tell me “he sings to us! He is so happy and he just makes us laugh!”
I have the most gregarious autistic individual in the whole planet here in my house. I have the kid who, while getting dressed this morning, was happily singing “Where, oh, where has my little dog gone?” with chord changes, harmonies…and laughing all the while. J gets home and, yes, he is work…but…even at his most irritating and persnickety, our life is not one whit bad at all!
Are we the people with an autistic child who other people with autistic children secretly despise? J’s low-functioning. J doesn’t speak. J is a rather over-grown toddler…with a lot of adolescent hormones. But, all in all, we’re alright.