What parents of special needs kids wish you knew

My son has special needs. He has a rare overgrowth syndrome and is developmentally disabled. And when you know that, you might think that you know my son, but there is so much more you don’t know.

Mom with special needs child

Since becoming my son’s mother, I have taken “judgmental” to a new level. That is not to say that I used to be a kinder, gentler version of myself — far from it — but, these days, I am particularly sensitive to people’s reactions and responses to my son.

My son loves garbage cans and leaf blowers more than I love coffee or sleep. He gives amazing hugs and has a smile that could stop war. He has a wicked sense of humor, a preference for Pringles over Ruffles, and a slightly disturbing ability to identify the minivans of our friends and acquaintances from half a mile away. But many people never get to know that, or him, because they see only his syndrome.

But I know that my son is a 6-year-old boy, as unique — and unremarkable — as your own child. I know that far too many people see a child with special needs as only special needs and miss out on the child. And I’m not the only mom who thinks so. So here’s what a few of my fellow special needs moms and I want you to know.

Our kids aren’t contagious

While it’s true that some kids are medically fragile, it’s usually that child who is at risk for catching an illness. But many parents and kids shy away from children with special needs as if they are carrying a communicable disease.

When her son was 3 months old, mom Janis learned that his jaw was obstructing his airway while he slept. “Basically, he was slowly being suffocated,” she says. “One week later, a tracheotomy was performed to create an alternate airway. A small plastic tube was placed in his trachea, between his voice box and his lungs; it allows him to breathe freely.”

While Janis, who blogs about her son’s medical issues, acknowledges that her son’s artificial airway is a big deal, she’s quick to point out that “he’s not contagious.

“If he coughs up phlegm, it is no different than your child sneezing. While you might grab a tissue, I grab a suction catheter,” she says. “More than anything, if you look beyond his ‘attachments,’ you will see a child — and every child deserves acceptance.

Our kids’ personalities aren’t disabled

It’s easy to assume that a child with special needs is nothing more than those needs. Easy — until you spend a minute or two with the child in question. And that’s really all it takes: You will quickly discover that kids with special needs are kids, first and foremost, with distinct personalities and preferences.

My kid has a non-disabled personality, even if he has physical challenges,” says Ellen Seidman, who authors an inspirational (and occasionally irreverent) blog for parents of kids with special needs. “Like any other little boy, he loves to play with trucks, roll around in dirt, watch Spongebob Squarepants, laugh when he farts. People who look at him may see a child with disabilities and not know how to interact, but make no mistake: He is still a kid,” she says.

Don’t assume our kids are helpless — or hopeless

Mom Karen Kysilka found that many people saw her son’s trach and feeding tube and assumed that he was “deficient in all areas. They were stunned to find that he was otherwise a ‘normal’ kid with a few extra plastic parts,” she says.

Even the professionals treating Kysilka’s son forgot that physical impairments don’t necessarily translate to cognitive disabilities. The team coordinator suggested that the toddler attend an alternative preschool, where he wouldn’t have had access to typically developing role models. Kysilka declined the placement, and 12 months later, her son is preparing to attend a regular preschool with no modifications. “I wish she hadn’t set the bar so low,” she says now. With patience, encouragement, and work, our kids can achieve greatness.

We live with our kids every day, and we see their differences as normal. We’d love for you to see our kids as normal, too.

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