My twin boys, Cannon and Carson, were diagnosed with autism five years ago– just one month before World Autism Awareness Day came into being. I mention this to give you some idea of all the growing pains my family has gone through, along with the rest of the Autism Community. If your child has only recently been diagnosed, you probably won’t be able to fully appreciate how many tremendous changes have come about since then, but you will most certainly benefit just the same.
My boys were diagnosed in March of 2007, just a few months after their second birthday. We had tried to get them diagnosed a year prior, but the psychiatrists and developmental pediatricians were on the fence about it, and decided to see if they would catch up on their own. They were twins after all, and boys at that. They were good babies who slept and ate well, and were never sick or colicky. It wasn’t so bad, those early months, except for the fact that they lagged behind other babies on all their milestones. Even other twins. Even other twin boys. They babbled, but didn’t talk. They didn’t point, ever. They didn’t walk until they were 19 months old, and even then, it was nearly another year before they could climb stairs. They were always extremely sensitive to sounds and movements. They hardly ever responded to their names. Well, you get the idea.
After the diagnosis came, which I had been expecting all along, I threw myself into action. My sons were already in Early Intervention, so we continued that. We also added in a bunch of therapies like Applied Behavior Analysis, Sensory Integration Therapy, and Speech Therapy. Almost none of it was covered by insurance back then, and I lost track of our out-of-pocket expenses some where after passing the $60,000 mark. Despite all of the extensive testing that showed they had no food sensitivities, we still did the gluten-free/casein-free diet for a year and a half, just to be sure.
I helped start a support group for moms because there were none, and I was the top fundraiser for the Autism Society Walk-A-Thon that year. I put a thousand miles on my car every month just from driving my children to all of their various therapies. I fought my insurance company all the way to external review to get more services covered for my kids. And by the way, this was nothing exceptional– everyone I knew was doing all of this, and more.
I now refer to that time as The First Year Crazies.
I’m in a very different place these days. The easiest way to sum up my ongoing transformation is to look at my bookshelf. The first book I bought after my sons were diagnosed was entitled Overcoming Autism. You can probably imagine what all that entails.
Fast forward five years, and right now I’m reading Carly’s Voice by the father of autistic self-advocate, Carly Fleischmann (who co-authored the book). This is HUGE for me. I couldn’t (wouldn’t) even hear the self-advocates until a few months ago. They stood with their signs at the awareness walks, and I marched right past them, eyes downcast. I’m listening to them now, but I had to get there in my own time.
The good news for you, if you have a child or children recently diagnosed on the autism spectrum? You’re a MoM, a mother of multiples. In some ways you’ve been grooming for this challenge for years now. You already know how to handle inappropriate comments from strangers, and who knows how to multitask better than you? This is just the next level. And if you have more than one kid on the spectrum, well, you’re a freaking rock star!
As a play on that old slogan we MoMs all know and love, I made a bumper sticker that says, “One autistic baby? I laugh at your ONE autistic baby!” Because humor helps.
After you do your own version of The First Year Crazies, come up for air and take care of yourself. Reconnect with old friends. Make new ones. If there’s not an autism support group in your area, start one. Read the autism blogs; both the ones written by the parents, AND also the ones by the self-advocates. Blogs are less static than books, and reflect cultural changes much sooner.
Do stuff that has nothing to do with autism! Gasp. Don’t worry, it will be still be there when you get back.
Most of all, don’t pathologize and over-therapize (I may have just made that word up) away these tender years of childhood that will be gone all too quickly as it is. Love your little people for who they are, and who they’re helping you to become.
Erica lives in the Pacific Northwest with her husband and their 7-year-old twin boys. She co-authors the blog Laughing Through Tears: Two women, four autism diagnoses, many cocktails.