Autism & Siblings: Part II
In April I wrote an autism & sibling post, but from my own family, and what I see.
Today's autism & sibling post is from an article that I really loved from the Hamilton Spectator. It's written by a dad, Joel Rubinoff who has one son with autism, and a younger son without autism. I like his honesty, his point of view, I love how his boys have so much love for each other. I appreciate him seeing and knowing that younger siblings often look up to older siblings, and look to them to lead the way, but in the case of older siblings with special needs, at some point, the younger may be the one leading the way.
And The Little One May Lead Him
Brothers Max & Sam. The older one with autism, the younger with a sever case of hero worship.
By Joel Rubinoff
Find the story on thespec.com
The delight they take in each other's presence is palpable.
They hold hands in the car, crawl into each other's beds for comfort and ascend the heavens in space capsules constructed from elaborately arranged futon pillows.
Max and Sam. Two brothers, 19 months apart — the older one with autism, the younger with a severe case of hero worship. At ages 5 and 31/2, they're pretty much inseparable, which, as their dad, I find both touching and bittersweet.
Touching because this is how I know it should be.
Bittersweet because I know, as most parents of autistic children know, that at some point, this dynamic may well reverse itself, with the protege overtaking the master.
Never mind the ethical quandaries: Is it right? Is it fair? It's already happening.
"It's OK, Max," Sammy comforts his older brother, whose "big feelings" have once again resulted in Sammy getting screamed at inches from his face. "We can watch your show instead. I don't need a turn."
"It's OK, Max," he'll tell him as I rev up the car stereo. "You can pick the first song. I can wait."
"It's OK, Max. You can have the last Orange Fiesta juice box. I'll have this crappy, no-name grape drink instead."
It's an odd thing to confess as the parent of an autistic child, but I sometimes feel more protective of Sammy than I do of Max.
Max will be OK, my gut tells me, with a little help and careful monitoring along the way.
But Sammy? How, I wonder, will this history of indentured servitude affect him in the long run?
When we found out Max had autism, Sam was 19 months, a freewheeling vagabond attempting to scale household furniture and cram his scraggly stuffies into cookie jars and heating vents.
For an older brother who struggled with the give and take of human interaction, this kid was a godsend.
"Sam, make sure you're not in my personal space!" Max would declare imperiously as his brother looked bewildered.
"Sam, it's dark outside — time to fall asleep. FALL ASLEEP! If you don't fall asleep, I won't be your best friend!"
The autocratic cruise director and his dutiful protege. But it works both ways. While Sam looks to no-nonsense Max for empirical benchmarks, factual certitude, the correct way to unscrew an Oreo cookie, Max gauges his more emotionally astute brother — in a scientific, bug-under-the-microscope way — for clues on how to interact with people.
To be fair, Max has come a long way since he was diagnosed in fall 2011. At that time, when he wasn't staring into space or lining up toy trucks, he was having two-hour tantrums over napkins that weren't folded correctly and toast that was improperly buttered. But two years of speech therapy, occupational therapy, behavioural therapy and Daddy tickle fights have helped this tiny titan surpass every limitation imposed by the "Oh my God, he has autism!" school of cautionary horror.
Every parent of a special-needs kid knows what I'm talking about: that sucker punch in the gut when the doctor looks you gravely in the eye and tells you "your child is not like the others. He will face challenges. He will need help."
It feels like the end of the world.
And because the autism community is split over priorities — celebrate differences or find a cure? — because interventions are chronically underfunded, because no one knows what causes this complex brain disorder that affects more kids than diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy and Down syndrome combined, you find yourself giving up hope.
But that's about you — not your kid. Your kid is just fine, thank you, content to view the world through his own unique prism.
And somehow he's evolved into a bright, well-mannered kid with a whimsical sense of humour and keen sense of irony. Like Dick Cavett in short pants.
Stigma? Despite alarmists who consider autism a one-way ticket to social rejection, Max has friends, gets invited to birthday parties and — this one confounds me — is greeted like the Norm character on TV's Cheers every time he shows up in the kindergarten playground. "MAXXXX!!"
This, of course, isn't the focus of most autism stories you read in the media, which tend to fall into one of two camps:
1. Kids so overwhelmingly needy their distraught parents feel compelled to drop them off at public shelters.
2. Kids everyone thought were lost to the world who turn out to be — get this — scientific geniuses.
As far as I can tell, Max — at the higher functioning end of the autism spectrum — is neither, just a regular kid who loves astronomy, art and gymnastics and who, yes, faces unique challenges.
Does he have meltdowns? You bet, though not as many as Toronto Mayor Rob Ford.
Does he respond well to change? Like the Titanic heading for an iceberg.
Which is where Sammy — the Phil Donahue of 3-year-olds — comes in.
"Sammy, come into my bed and we'll pretend it's a rocket ship and go to the cookie planet," I hear Max suggesting over the baby monitor as I lie comatose in bed.
"Weeeeeeell ..." Sam, a classic slow waker, hedges in his elongated Jimmy Stewart drawl. "I think I'll just stay here for awhile and rest."
And sure enough, Max — a leaner, combover-free Donald Trump — blasts him.
"THAT'S IT, SAMMY!" he bellows. "YOU'RE NOT MY FRIEND ANYMORE! I WILL NEVER PLAY WITH YOU AGAIN! I DON'T LOVE YOU ANYMORE!"
For Max it's an immovable mountain, and one he will struggle to surpass. Will he do it? No one would accuse me of being an incurable optimist, but I don't doubt that — with a little nudging and a lot of screaming — he'll grow into a happy, productive adult.
Hell, we think he's fantastic — why shouldn't everyone else?
But the stats tell another story, with nine out of 10 autistic adults unemployed or underemployed, regardless of IQ or education level, says the advocacy group Autism Speaks.
Many live with their parents, their potential squandered, struggling to find their place.
But it's Sammy — the pint-sized peacemaker — who will be around to witness the milestones, the heartbreaks, to help Max navigate the nuances when things become overwhelming.
But lately he's looking a little frayed around the edges.
"I'm mad at you, Max!" he'll growl when goaded to his breaking point. "I'm not your friend anymore!"
Max looks shocked, but Sam — shaking with emotion — stands his ground.
It's moments like these — when the devoted younger sib teaches his struggling older brother how the world really works — when I feel like rushing over to raise his little fist in triumph.
"Atta boy, Sam. Give him hell, don't take crap. And whatever you do, watch his back."
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Hi, I'm Amy-Lyn!
I am the lady behind this here blog! I live in the sticks with my animals, my super handsome husband, and my
3 amazing kids!
Here you'll find things from recipes (gluten-free, paleo, and strait up junk food!), DIY ideas, thoughts on raising a son with autism, and whatever else pops into my brain! : )
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