You say Autism like it’s a bad thing…

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.

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6 thoughts on “You say Autism like it’s a bad thing…

  1. Hmmm….well, to be perfectly frank, some parents of autistic kids probably do hate you. In our family we have the kind of autistic kid that makes us feel semi-ashamed to even call him autistic, and another autistic kid who is autistic in such slight, nuanced ways that even “experts” have to argue over whether or not she should have the word autism written on her chart. I suppose some parents really hate us, snort and roll their eyes that we even dare to call our children who walk around talking like tiny professors autistic. But, being related to them and having the same kind of literal thought process, I know they are autistic. The word “autistic” comes from the Greek word which means “self” and conveys the idea that this person lives in a small world that is a population of one: him or herself.

    I very much dislike the feeling that there is some kind of autism contest, as if to be “truly” autistic a child must put all the people around him or her into a state of horror.

    My own kids had an extremely rocky early development. For some reason they improved beyond what we imagined they would as they entered their young childhood years. Some days I feel like I can actually forget what the autism in our house used to be like when I DID feel like I’d been flattened by a steam roller. Other days (like a couple of weeks ago) we have bad run-ins with autism and I text a friend to come and listen to me bawl. Then I get over it and laugh again.

    I’m with you on hating Pollyanna. In fact I once wrote an entire post about drop-kicking her if she showed up at my door. Granted the only way that I “know” you is by reading what you write, but you don’t strike me as the Pollyanna type. Here’s what it sounds like: you and your husband are strong people who roll with the punches, see the positive in situations and have a knack for figuring out what works well for you and your family in navigating through all of the interesting twists and turns that autism serves up. That’s amazing. It’s okay, just enjoy it guilt free. 🙂

    It’s only my personal opinion, but I feel like the really angry parents out there might be ones who don’t have an adequate support system and never get breaks. Or maybe they can’t get over the loss of the dream of what that child was supposed to be in their minds; perhaps they are people who perseverate on the negative and can’t see past it (after all, it’s been pretty firmly established that at least some cases of autism are genetically linked…). Of course, I know, they’d be quick to remind me that they’d love to trade their kids who are obssessed with playing in the toilet for mine, one of whom is obssessed with paleontology and cries when people don’t want to listen to his entire account of the happenings of the mesozoic era, and the other who scripts her language from the villain girl on a TV show she saw once, and therefore walks around sounding like a prima donna snot, thereby putting off all the people around her who can’t see her disability. I get that. The toilet playing maybe does trump all. I could say, “Well, at least when people see your kids being irresistably drawn toward toilets they can see that something is wrong and give you a pass.” But then I’d just be sinking to their level.

    This was a great post! And I love picturing your J singing as he goes about his day. And I love the fact that you love it because it could be otherwise–and he’s a very lucky kid to have you for a mom.

    • There are days when it hits me -very hard and suddenly- that I am extremely lucky to have J as my kid. He has been the evolution of me; I said yesterday that my oldest is my favorite, and it is true because he is the kid I yearned for and with whom I bonded as I learned the nuances of being a mom, but J is my emotional maturity. I have had to divest myself of many snags in the fabric of who I am to do what is required of me.

      He does sing a lot. And he does it with feeling, even if he doesn’t enunciate the words. He corrects me when I get a note wrong…with a loud “AHEM!” and a glare…”How lacking in musicality you are, mother dear!” His quirks are many, and a lot of people don’t understand them, but J endears himself to just about everyone…

      Thanks for your thoughtful reply, and let me know if there is anything you ever want to talk about how we all feel the need to burrow under rather heavy, monumentally-sized furniture because our kids are…well…our kids. 🙂

  2. I watched ‘Dad’s in Heaven with Nixon’ and it’s a mind blowing documentary about a man in his 50’s with autism. He’s the most perfectly content human you can imagine. Of course there’s no one autism, but it made me think that we’re not quite as normal as we think we are, and maybe it’s us that haven’t figured what’s important.

    • We don’t really consider ourselves “normal.” We think that word is tremendously overrated and a huge disservice to mankind in general. Normalcy requires conforming to a template that is so general, and yet fraught with outside judgment, that it impedes the peace of mind we all need. I have a dear friend who, in his youth, spent time in an interment camp for Japanese-Americans during World War II, and he had a younger brother with Autism…the brother lived to adulthood, and my friend often spoke of him with an affection that came from understanding beyond the bonds of blood. My dad said about J, even before he was diagnosed, “he is so pleasant, so at peace with himself that any day we might have a bunch of Buddhist monks coming to anoint their new Dalai Lama on our doorstep.” There is comfort in the acceptance of our individual “weirdness” because it reminds us that we can’t each be “wrong,” right? The Great Gonzo learned, very early on, to take “weird” as a compliment, or at least to allow himself to not be offended by the word.

      e.e. cummings said: It takes courage to grow up and become who you really are. I think J’s head and shoulders above us on that one. 🙂

  3. What is ‘normal’, anyway? I first realised what a frighteningly un-graspable concept this was when I had an opportunity to visit the schizophrenics’ ward in a mental hospital. You talk to these people, and you can absolutely tell which are the abnormal ones, but if you were to try and describe what exactly is that ‘abnormality’ it’s not as easy as you’d think. Around that time (in my teens) I had a friend who was 100% normal, a textbook teenager who dressed exactly according to the fashion of the time, acted totally normal, had no weird quirks or habits, and it was just downright creepy. I started realising then that normality is overrated, and what is freaky is people who are totally normal.

    I can only concur with what’s been said above, and I too often wonder sometimes if I’m not embarrassingly overrating the autism thing. My J just seems so normal, and your description of your J’s sense of humour resonates so with me – though my J is 14, and high functioning, that kind of glint-in-the-eye look at life sounds so familiar! However, here’s something I which I wonder if it might not give you food for thought, too. I have had the experience a few times of being shocked to the core when the safe world we created for our J is compromised, and he reverts to behaviour that only a complete idiot would not recognise as textbook autism. I’m not talking everyday challenges and problems, he can face those, but he seems to stand on this foundation of the safety of our support and his warm, loving home. Last year we went through the pits of hell, and that foundation was threatened. It was one of the big shocks I had to deal with to see that no, he hasn’t miraculously become un-autistic. He does so well because we have created a safe platform for him from which to operate in the world.

    As for feeling lucky, again I felt this resonance. It’s something I’m constantly saying as well. Yet now and then I’ve described some of the things I consider normal, and had people react in ways that make me realise it’s not so normal. Noise, just as a small example. Our home, car, and life are all much more quiet than I appreciate until I visit other people. I can also only tolerate that for a limited amount of time. I think we happily adapt in some ways that make life smoother, and we don’t mind the adaptation because it suits us.

    Lastly, in this uber-long comment, I have to think a sense of humour is just the make or break when a family is presented with autism in any form. You never for a moment sound as if you are unrealistic about what’s on your plate with J, but in all your posts there is a basic sense of humour that wins the day, even if it’s right at the end after we’ve been to despair and anger. I’ve seen that same thing in other autistic families, notably InTheKiln who commented up there. 😉

    • Nadia, we too have concerns about the level of comfort we’ve created; our J navigates the outside world rather well, but can be thrown off by the sudden and significant changes that come attached to any crises. If, for some unknown and very personal reason, he is going through a “moment” (this is what we call those bouts of teenage introspection that drive parents nuts whether they come with Autism or not,) our J tends to have intensified autistic characteristics; almost, I’d say, a cloak of Autism that he can pull over himself and use as a shield against outside influences.

      Noise…we too are quite different in that respect. J can hear an ambulance barreling in our direction and will tap the driver’s shoulder and motion with his hand. Spring is especially irritating with the cropping up of leaf-blowers, lawnmowers, and such. Should I have to dry J’s hair, I apologize beforehand if I’m employing a hair dryer… Britney Spears was the weapon of choice for The Great Gonzo to clear his room of J when they were very young; no sooner had she sung “oh, baby, baby…how was I supposed to know…” and J would be out the door, fleeing for his auditive sanity. At the same time, he would be completely comfortable listening to Led Zeppelin IV in its totality while grinning from ear to ear… A creaking floorboard as I head up the stairs from the basement elicits an immediate response from J’s bedroom on the top level, and he recognizes every cabinet or closet door, every drawer, every type of plastic wrapping that enters this house. Early on I eliminated loss of hearing from the list of possible ailments because J could pick up the sound of a soda can opening from four rooms away.

      We speak the language of “really? Show me what you’ve got!” here. And we “ooh” and “aah” when confronted with other people’s more “typical” lifestyles. I don’t think J would be comfortable if I walked around the grocery store talking into a mobile phone while he is doing his shopping; he is very “task-oriented” and has developed a vast amount of independence; I think he would find it distressing if I minimized his endeavors in that department by not being engaged in his process. Does that make sense? I see moms walking around the store with their children and they are talking into a mobile, completely engaged with the person on the other side of the line, and the children are either seeking attention, roaming about aimlessly…I think J would dig his heels and refuse to move. Is it tyrannical of him? Maybe…the one person in the household who is profoundly capable of isolating himself demanding total commitment at one given moment. To us that is not only “the norm,” it is the “ideal” because it means J wants to interact with us. People probably pity us. (Ouch…people out there might pity us? That’s horrible!)

      We all modify because -aside from making sure our children are happy and feel peaceful from within- we want a sense of calm to pervade the premises. We want a sense of calm to be easily accessible to us. We want to be able to conjure up the deep breath that tells us insanity is usually followed by an anecdote that the entire family will find hilarious even if the rest of the world thinks we’re nuts (‘But I don’t want to go among mad people,’ said Alice. ‘Oh, you can’t help that,’ said the cat. ‘We’re all mad here.’) At the end of the day, we didn’t just go down the rabbit hole, we opened the little door and stepped into Carroll’s world, and we’re comfortable there…oh, we miss the “above ground” world from time to time, but we do get comfortable and find this location very much to our liking.

      I go back to Erma Bombeck (you should find her books…she was funny because she was a mother and she was honest about the absurdities of everyday life) “if you can’t make it better, you can laugh at it.” 🙂

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