Parenting A Special Needs Child: A Story of Struggle and Survival


As an expectant mom, I remember scouring and assessing my child-to-be’s gene pool, but like Forrest Gump’s Momma’s famous pearl, “Life is Like a Box Of Chocolates and you never know what you’re gonna get!”

You cannot control who your children will be or what they will be predisposed to (at least not yet, but give science just a bit longer). Any expectant parent has nightmares during those nine months. While numerous tests are conducted in utero to detect any “defects”, there are many things that go undetected or develop later in life.

The Discovery
At any stage of the game, you dread hearing any variation of “something is wrong” with your baby/child/adolescent/young adult. Those locked and loaded words uttered by your doctor, mother, friend or teacher, trigger a chord that’s unlike anything else you’ve ever felt before.

Your child is now an enigma, and so begins your rounds to the neurologist, audiologist, orthopedist, (insert specialist here) and repeat. You request an evaluation from your school district (which you are entitled to).

The Guilt Trip
Feeling defeated and riddled with guilt, you start to think about Dr. Leo Kanner’s 1940’s (now overturned) theory that “Autism is a condition caused by ‘cold, unloving mothers.’” Eventually you come to and realize that Dr. Leo probably had serious mommy issues and needs a session with Dr. Freud.

Taking Action
Kicking yourself doesn’t help your child but action does. As you compose yourself, you remind yourself of Barb Ling’s pearl that although “it might be raining where you’re standing now, pull yourself higher and eventually you’ll see above the clouds.”

Once diagnosed, it’s a whole new ballgame.

In order to qualify for “services” you must grant parental “consent” for your child to be “Classified as Disabled.” Your child, YOUR baby Jesus – disabled? On paper? By the State? It’s a tough pill to swallow.

Ultimately you will seek and fight for as many services as you can get for your child.

Getting Help
In your quest for your kid’s perfect path down the yellow brick road, you realize your GPS is screwed up, but it’s not a desolate path and there are bystanders to extend some water, a tissue, and help direct you at the next fork in the road.

Luckily, we’ve come a long way in the area of Special Needs thanks to legislation, education, science, early childhood intervention, nonprofits and a growing army of parental advocates. Chances are a hundred, if not a thousand, if not a hundred thousand other people are facing the same challenges as your family.

If you’ve ever experienced a “disability” you’ll know how frustrating it is and how powerless it can feel. Falling into my own memory of needing help with reading comprehension, being immobilized after my two C-sections, hobbling on crutches in high school after surgery, and recently when I broke my toe and lost my voice, each time facing the daily struggles and relying on different skills to compensate.

As a parent, you just want to rest assured that whatever your child faces that help is available and their needs, whether special or otherwise, can and will be supplied in a nurturing manner and hopefully without breaking your bank or your spirit.

The New Normal
We are all mapped and hardwired in different ways and with all of our moving parts – it’s a miracle that any of us function.

With every 1 in 68 children facing life on the Autism spectrum and the origins unknown, we are re-thinking of how we are wired. We are facing a new world. Maybe these children will lead us deeper into our hearts.

Every parent experiences heartbreaks and triumphs and, with special needs children, it’s no different and to be expected, you will see your child sprint ahead one day then sit on the sidelines the next.

Together you will build a fortress of strength and enjoy in discovering the sweetness of your select box of chocolates.

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