Family

‘It Never Occurred to Us to Be Victims’: One Mom’s Tale

Mother of special needs child wasn't going to be 'taken care of' by government or anyone else

Sometimes life launches a brick through a window that almost destroys a family. For my toddler and me, it was our family physician’s diagnosis that my beloved son was riddled with disabilities.

So the child I believed was “perfect” — wasn’t? That’s right. Some parents never recover from such a kick in the gut. For the couples with special needs kids whom I encountered later in my journey, most if not all ended up divorced because at least one spouse couldn’t cope with the emotional, medical, educational and financial obstacles.

“He’s got one heck of an engine in that brain.” The challenge was finding it and helping it thrive.

Nonetheless, I was lucky to be a successful attorney in a northern New Jersey town not far from New York City. But I learned the hard way that money couldn’t save the day. I needed to access our family’s tradition of iron ill, hard work, and sacrifice garnered from my Greatest Generation parents who survived the Great Depression of the late 1920s and 1930s. Indeed, when I asked my Republican dad as a kid which president in history he disliked the most, he replied, “FDR — because from then on people expected handouts from the government during hard times.”

I understand that many young parents out there might sigh and think, “Oh, no! Not the same old story about how people walked through five feet of snow to school every day and then worked on the farm once they got home!”

Yet no matter the times — there are those from all walks of life who overcome hardship thanks to their own grit.

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Related: What You Never Knew About Raising Special Needs Kids

I knew we needed to relocate to another state because there were no viable schools in our area to meet my son’s needs, which included deafness, Asperger Syndrome, ADD, and chronic allergies. In addition, perhaps the most gut-wrenching fact was that he was also highly gifted. One expert commented, “He’s got one heck of an engine in that brain.” The challenge was finding it — and helping it thrive.

At the time, California offered the best in special education along with appropriate ancillary experts for my son. I learned this from a group of parents of disabled kids called SPAN (Statewide Parents’ Advocacy Network) and my closest New Jersey friend. She was a deaf gal, a born-again Christian, and my son’s private tutor; she’d just gotten married to an engineer with Lockheed Martin, based in southern California.

Related: A Mom’s Guide to Sanity for Life

After she moved out there, the couple invited my son and me to visit for the summer. We loved it and found all that was needed. Still, a permanent move cross-country, while rewarding, was grueling, with flights back and forth and so many necessary arrangements for relocating.

Starting over as a California attorney was also not doable for me as a single mom. Although we had savings to last us awhile, I had to find work that allowed me flextime to assist my son at home, whether this meant working nights while he slept or napping during his daytime school schedule.

Looking hard at my strengths and skills, I felt the only viable answer was to write for a living, despite many naysayers. Thank goodness my parents were not among them. To encourage me, they dug out my early poetry, essays, journals and stories from my school days in New Jersey.

Did I have moments of being at my wits’ end? Yep!

And so it began: a long road of rejections, leading up to my own column in a national Catholic magazine that got us up and running. When work wasn’t available, I set up an online used-book store and trudged through rain, sleet and sometimes snow on foot to the post office to make mailings to customers.

After that venture fizzled out, I started a consulting firm for parents of special needs kids. Even so, did I have moments of being at my wits’ end? Yep. Were there times I considered taking public assistance if I could? Yep.

But I couldn’t. Like my veteran hero dad, I was raised to be tough. Sure, the world could be cruel, hurtful, and unrelenting. So what? Neither I nor my son would succumb to defeat as long as we had breath in our bodies to sing our fight songs from all five branches of the military to win the moment. I also trusted in God — and I did not care, then or now, how others viewed my life or my decisions.

Related: Tough Love Wasn’t the Answer for This Mom

I’m not special in any way. I know many parents of special needs kids who had it (both then and now) far tougher than I ever did. But I lucked out in having great parents with traditional family values, a conservative mindset, and a never-ending love.

Still, my son deserves credit for being a great teacher. He pushed me out of my comfort zone to do the right thing — namely, choosing him over my own selfish needs. The result? I developed an untapped ability to stretch myself beyond what I once believed formed my professional, physical and emotional boundaries.

It can be the least and last child who has the most heroic heart of all — and becomes the one who leads a struggling parent to unexplored new worlds.

The author, a retired attorney, is a published poet, writer, and columnist based in Arizona. 

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