BY KIMBERLEE MCCAFFERTY
I STILL REMEMBER THE DAY I KNEW MY AUTISTIC SON WOULD
REMAIN ON THE SEVERE END OF THE SPECTRUM.
Justin was five and in the last few weeks of his pre-school program before he would transition back into district to his hometown public school. I recall going to his classroom for some type of program, the theme of which escapes me, and seeing a little blond girl he’d started with almost two years prior who had presented almost exactly like my boy. I remember watching as this young lady used words to get what she wanted, made eye contact with everyone around her, was able to sit still while waiting for the show to begin. She still flapped her hands as she waited, but none of the other stims I’d seen her do when she began school at the tender age of three seemed to have remained with her. She was joyful, talkative, engaged.
She no longer bore any resemblance to my son.
I recall how the realization hit me like a wave, starting in my gut, hitting me hard in my heart and flooding my eyes with tears I had trouble keeping back. My boy had been diagnosed at 17 months, back when that was unheard of. He’d been in either a 30-hour a week ABA program or full day pre-school for three-and-a-half years. Had he made progress? Absolutely. He had gone from using meltdowns to get his needs met to using the PECS system very successfully to acquire what he wanted. He had finally learned how to sleep through the night (my favorite of all his skill acquisitions). He was eating things that didn’t fall into the carb category, and we’d finally found ourselves able to take him places with varying degrees of success. Potty training had been (mostly) conquered. His life, and by extension, his parents’ lives, were so much easier than those dark days of his infancy when we didn’t know how to make him happy, and his toddler years, where almost every aspect of his life was a struggle.
But still, there was so little eye contact unless it was with us. He still spent a good deal of time unhappy and at odds with the world around him.
There were still no words.
I remember watching the program with an overwhelming sadness, with hope waging a steady war with reality inside my head. Part of me said he was only five, how could I possibly predict the trajectory of his life at such a tender age, particularly when I knew he was bright?
But the truth is, I just knew. After all, I had another autistic child at home who had regressed at 21 months, lost all of his words, and had retreated into his own world. Within three months of therapy he was speaking again, and while different from the child we had known before, we watched as every day he made tremendous progress in regaining the skills he had lost, showed an increasing interest each day with the world and the people in it. All of his Early Intervention therapists were amazed at how quickly he progressed, touting him as an “early therapy success story.”
And I remember thinking fiercely as I drove home that day that despite the modest gains Justin had made, I considered him a “success story” too.
I admit, after my realization I mourned again, as I had when he had been diagnosed, and I knew from my prior teaching days exactly what he and our family were in for. I had never wished him off the spectrum. I didn’t believe it was possible frankly, and I had taught plenty of students with mild autism who had wonderful and fulfilling lives. Over time I accepted he would not have the life I had assumed he’d lead—the one with friends, and driving, and college, and sleepovers, and someone to love—and the one that was hardest of all for me, independence.
It’s his inability to lead an independent life that still lays me low today.
Over time, my premonitions about both boys turned out to be right. My youngest is now fully mainstreamed in a non-inclusion class, and shed his 504 this year. He has friends, participates in activities within and outside of school. He talks about his future wife and five kids, and my heart never clenches as I anticipate he will realize that dream someday (hopefully with a well-paying job to go with it).
My gut tells me he will be able to care for himself after I’m dead. For this, I am eternally grateful. Justin will not. And I know, as I know I will never give up eating chocolate, that I will never get over this aspect of his disorder.
The truth is, I haven’t made my peace with it, and I expect I never will. When I think of the enormous amount of details that go into keeping my now teenaged autistic son happy and the dozens and dozens of people who will be charged with caring for him until his death, I am overwhelmed. The thing is, however, his father and I and many, many, many other people have been able to craft a wonderful life for him, the one that he wants, not the one we wanted for him. Justin adores his school. He loves going places for short periods of time, and has a number of locations in his repertoire. He gives me more hugs and kisses than any teenager gives his mother on the entire planet.
My dreams for this level of detail to exist for the 40 years he’ll be there without me will probably not be realized—my rational mind knows this.
I haven’t made my peace with having him live on this earth without me. But I have made my peace with this: I’ve let go of what I thought he’d need, and accepted what he does need. He needs his autism school. He needs his mom, his dad, and his little brother. He needs exactly 15 pretzels nuggets daily to fill his tummy. He needs access to the computer so he can “drive” on the Hertz rent-a-car site (he’s been all over Jersey!).
He needs affection, and hugs, and love. Don’t we all?
So I’m trying, and I am a work in progress, to dwell in the now, not in the later. My “now” is two ridiculously happy boys on the spectrum, who revel in their lives, one on the severe end, one not. They love school. They have activities that engage them. They relate to and adore their families. Both of them love their pretzels.
They are happy. And for now, I am trying very hard for that to be enough.
ABOUT THE AUTHOR:
Kimberlee Rutan McCafferty is a regular contributor to Exceptional Parent. She is also the author of Raising Autism: Surviving the Early Years, a memoir about parenting her two boys, both of whom have autism. Her new book is available on amazon.com