themighty logo

When You Have Thin Skin as a Special Needs Parent

I’ve often heard special needs parenting requires a thick skin. However, this mama’s skin feels pretty thin much of the time.

My own momma used to tell me I “wear my heart on my sleeve.” So my exposed heart gets hurt, and the skin under my heart-covered sleeve is fragile. And I become weary. Weary of the continuous fight. Education, services, therapies, specialists, doctors and the gamut of who and what is needed to simply sustain “special needs life” overwhelms me at times.

My child, Joshua, who cannot speak, possessing the cognitive skills of a toddler encased in a pre-pubescent body, often expresses his frustration through unexpected meltdowns and constant, loud stimming (self-stimulating behavior).

Learning a simple skill requires constant repetition. Nothing comes easy for him.

Heart defects and respiratory problems loom in the back of my mind, as well as the risks of certain diseases more common in a child like mine.

I’m a guard keeping constant watch over the delicate, yet mighty fortress that is Joshua.

Other parents deal with similar issues. Some less. Some more.

Many watch helplessly as their child suffers from multiple seizures daily. Others cannot leave their home because of health or behavioral problems. Others practically live in a hospital, as I did for several years. Surgeries become commonplace. Others change feeding tubes, haul wheelchairs in and out of vans and struggle to get through doors while onlookers do just that — they look.

Penetrating stares and flippant remarks seem acceptable and even appropriate. Name-calling and jokes are merely a Facebook newsfeed, doctor’s office or grocery store aisle away.

“Sit down! What are you, retarded?” yells a father at his running children as my husband sits waiting for an appointment.

“You know, I have the opposite problem. All three of my children are highly gifted,” boasts a mom as I push Joshua on a swing.

“You do know he’s sucking his toes,” says a woman disapprovingly to my friend.

“You must ride the short bus,” says a guy driving an airport shuttle to my friend whose son also has Down syndrome.

“There’s no such thing as ADHD. That’s just something lazy parents make up because they don’t want to discipline their children,” says a mother who has children with no such issues.

We deal with insensitive bedside manner and quietly nod as doctors and specialists give their “expert” opinions.

“You know he will be moderately to severely mentally retarded. You may want to reconsider terminating your pregnancy because you are so devastated,” says the obstetrician. To me.

“Your son is too profoundly mentally retarded to go to that school,” says a specialist. Again, to me.

Memes calling people “retarded.” And my friends “liking” them.

Look at my heart. On my sleeve, wet with tears for my precious boy and all those like him who would simply hug and smile at someone who called them that or posted that picture.

I have cried to the Lord in my most raw, real moments before Him that he picked the wrong person to do all this. Because I don’t have the stamina, the fortitude to withstand all that goes with this journey.

But I don’t believe God makes mistakes. I believe He chose Joshua for me.

His life is worth every single hard thing I must do. Or hear. Or read. Or even ignore.

I believe God’s grace enables me to turn the other cheek when I want to scream, “You don’t live my life!” He has entrusted me with much.

Often the most difficult thing is not what I must do for my son, but what I have to hear about him.

But hurtful comments and careless words are no match for his smile.

And I realize I am able because His power is made perfect in weakness. And while my heart my lay open for all to see, I know who holds it. And as long as it beats, it will always be vulnerable as not to harden to the harshness of this world, but to soften the hearts of those around me.

Follow this journey on Spinning Plates.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.