New Year’s Evolution

This is a post by Kimberlee Rutan McCafferty, author and mother to two sons on the autism spectrum and an Autism Family Partner at the Children’s Hospital of Philadelphia (CHOP). Kim is also the author of a blog about her two children with autism. And the author of the book called Raising Autism: Surviving the Early Years. 

Yesterday I saw a post on Facebook by a friend. It was an image of a cat kicking the number “2023” off a ledge. 

My sentiments exactly. 

Frankly, I could say the same about 2022 as well. 

Truly, the last two years have been so ridiculous on so many levels, they would never merit a drama on Netflix. 

I won’t elaborate on why, but suffice it to say the last twenty-four months have taxed this writer’s “find the silver lining” mantra to the max. 

And yet, I will prevail in my quest to provide a happy, safe life for my family, and for me as well. 

A life filled with the requisite chocolate and pinot grigio accompaniments, of course. 

I’ve learned a lot about “lookbacks” this year, and my lookback over the last twenty have seen a lot of trials, and I’d say an equal number of triumphs. Perhaps in all of this nothing was more difficult than finding out my eldest, most desperately wanted child, survivor of several miscarriages and years of fertility treatments, was autistic; and much more difficult, accepting years later he would always remain on the profound end of the spectrum. 

The latter realization was not as dramatic as the day my son’s pediatrician shoved us out his office door with a bunch of articles with the words “autism” in the title and a brusque “good luck.” It was more of a slow reckoning, punctuated by assessments that showed developmental growth in increments, not in the huge milestones I had hoped for. 

The exact milestones my second son, also autistic, would later make seemingly effortlessly. 

There was a period of time when this latter realization occurred simultaneously when my eldest was five, and my youngest, who had developed typically until the age of eighteen months, within the course of two weeks lost a year of skills in all six developmental domains, rendering him a completely different child than the son we’d come to know, and love. 

I was forty-one years old, with two autistic children under the age of six. 

It would have been easy to give up hope. 

Hope that they, and their parents, would ever enjoy any resemblance to a “typical” life. 

Hope that I’d ever sleep again. 

Hope that my children would one day not suffer. 

There was a period of time during that dark fall it was difficult for me to summon the energy to rise every morning. For a woman who has handled a great deal of “difficult” in her life, even I was overwhelmed. 

The truth was, I couldn’t see my way out of the suffering. And if that’s all there was to be, I didn’t see the point in trying. 

Fortunately, I had friends and family to lift me up. They gave me the gift of examples of children they’d known, very similar to mine, who struggled, yet eventually attained joyful lives. 

Their names became my new mantra, my inspiration for getting up each day. 

I am forever grateful for their existence. 

I now have two happy, healthy, successful autistic children. 

One is an adult who resides on the profound end of the spectrum who is beloved by his teachers, who holds a small job (at a municipal building taking out staples from documents), who greets each morning with enthusiasm. A son we’ve been able to fly with on half a dozen occasions, who is able to do many self-care tasks independently. A child of joy. 

I also have a teenager who drives me crazy with normal “teenageriness”, who is kind and empathetic, and will go on to live a more “typical” life, although I know less and less what that really is. He has friends, excels at school, and makes me laugh. He thinks his childhood was fabulous. 

They are my life. 

They wouldn’t be where they are now if I’d given up hope. They have accomplished these miracles from their inner strength and innate abilities, but they needed a guide, a sherpa to help get them there. 

If someone had told me fifteen years ago where they’d be now, during that dark season, I don’t know that I would have believed it. 

But the hint of that happiness, the mere thought of attainable peace, was the spark that kept me going. 

Forget the weight loss resolutions, the return to regular exercise. Dispose of the self-promises that may or may not be kept. 

Keep this one instead.  

Never, ever, give up hope. Keep that spark alive. Be relentless in your pursuit of safe, happy, and meaningful lives. 

Not just for your children. 

For you as well.  

You deserve that grace too. 

Happiest of New Years to everyone!