Fair warning, lots of un-PC comments ahead.
It wasn't too many years ago that I thought autism was just part of my kid and something to be embraced, just like any other "quirk". I embraced the "neuro-diversity" movement. This was akin to thinking that Andrew's autism was a positive gift. Of course, this was before my kid started having violent behaviors, became completely dysregulated, and seemed to be crawling out of his own skin more often than not.
The director of a local autism resource center completely called me out when I posted some "autism is just peachy and a blessing" status update on Facebook. (The Internet- this is how autism moms connect, outside of school pick-ups and drop-offs and sitting in the waiting rooms of Speech and OT clinics). It was a total reality check that she, mother of an adult with autism, knew so much more than I did, and she knew I was living in a deluded reality about the "gifts" of autism.
I adore my friend Susan Senator, author of Making Peace with Autism and the Autism Mom's Survival Guide. I love that she has supported so many of us by sharing her family's experiences. I am envious she has a supportive and loving husband who has been a partner to her in parenting their son. But, the older Andrew gets, the less at peace I am with autism, and the more clearly illuminated the facts my life is neither particularly happy or our family balanced become. Like 2/3rds of autism moms out there, I am single, unable to sustain a marriage or relationship while parenting a child with autism. I thought I had found the most supportive type of partner possible- an autism sib. He loved my kid, but more important, he understood my kid and didn't judge. Too bad, he was unable to do either for me. The chances of a divorced mom of 4 children with an autistic child finding love again are somewhat similar to the occurrence of flying pigs- it ain't gonna happen.
No, I haven't turned into "that mother" who puts her child on a different diet every week (although the diets seem to help *some* kids), has his body de-toxified or chelated, and gives him vitamins and supplements galore (although vitamins never hurt anyone). I still have never played the "blame game" beyond moments of wondering what a 5 day Pitocin induction does to a baby's neurological system. A vaccination, or 20, did not cause Andrew's autism. What did? Some funky mix of biology that may or may not been triggered by something in his environment is the best guess I can make. I'm not trying to "cure" him, although I now admit if there was a proven and safe cure, I'd fight to be the first in line to procure it.
I think all autism moms are more energetic and involved with helping raise awareness when their kids are young. I was a force to be reckoned with in the local Star Market when some grumpy old lady complained about Andrew's behavior when he was a preschooler, chastising her until she looked ashamed. That scene repeated itself dozens of times over the years, people saying "why are you allowing your child to misbehave? He needs a good spanking" or staring. I organized "Andrew's Team" for the Autism Speaks/NAAR Boston Walk for many years (the team raised over $35,000 in its incarnations thanks to our wonderful friends and family).
I did not want to hear the stories people with older autistic children, or acquaintances, told. I listened to stories of an adult with autism who flicked the lights on and off repeatedly during dinner, who hid things, aggressed at his family, whose loving parents helped found an adult living community for those with autism. I couldn't believe then that my adorable 6 year old little boy, who drew houses and towns an architect would approve of, and made the most amazing forecasts, all while having some savant-skills with calendars and math, would ever not be safe around me, or would hurt his siblings.
Then, my cute little boy grew into a strong, handsome young man. He stopped making forts for his multitude of Build-A-Bears and sleeping on a bean bag in his Buzz Lightyear tent, using social stories with Boardmaker pictures to navigate his world and communicate his wants and needs. He became a pre-adolescent whose sensory system (always in need of more input and welcoming of deep pressure and hugs and squooshes) went into overdrive, who screamed not because there was something pressing to communicate, but because he could not control himself. He became a young man who lashed out at those who love him; hitting, swearing, spitting, and even biting when he doesn't get what he wants, even when it is something I have no control over. He complains about kids who scream at his school, yet can not make the connection that kids in our neighborhood and community look at him as the kid who screams.
Do not doubt this: I love my son and will advocate fiercely for him so long as I am taking breaths. I will cherish the moments of connection, the snuggles he is sometimes still willing to give, and the calm that envelops him when he is engaged in preferred activities. But, I will mourn the boy I was so convinced would "lose the diagnosis" solely with good teaching, lots of carry-over, and even more love and devotion. Andrew is a young adult with autism spectrum disorder (PDD-NOS, Aspergers, call it whatever you want) who will need support and structure to learn, to work, and to live his entire life. I better start channeling some of that energy from five years ago when I was raising money for autism research into creating living and vocational opportunities for kids just like Andrew.
I will have hope as Andrew starts school at Pathways Academy on Wednesday that this will be "the program" and methodology which will best meet Andrew where he is. I'm not at peace, but I am willing to meet him halfway and try to show compassion and kindness when the neurons in his brain are not connecting and he can't do anything but scream and pace (in our house, it's called "doing laps"). It's not peace, but it is the best I can do.
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