Despite the prevalence of Chicken Soup stories and television specials, parenting a child with special needs is not a particularly rosy experience. Read on for a look at what most of these parents would never tell you.
One of the things you learn when you have a child with special needs is that having a child with special needs is not an after school special, a Lifetime movie, or a very special episode of an otherwise humorous show. It’s a whole-life commitment, and generally no one really asks you if you’re interested before you sign up.
Some people romanticize the notion of having a Child with Special Needs. You can hear the capital letters when they talk. They cock their heads to the side and ask you how you’re feeling, how you’re doing, how you’re holding up all the time. They mean well. They think they’re being kind. And they probably have no idea why you’ve stopped returning their calls.
When you actually have a kid with special needs, you figure out pretty darn quickly that some parts of your job are really awful.
This wasn’t in the job description.
No one enjoys calling insurance companies daily and fighting for services that should be covered, services that were supposed to be covered, services that need to be covered, services that could help.
No one thinks it’s fun to race to school for early pickup, tear across town for therapy, duck out to pick up the siblings, schlep the siblings back to pick up the kid in therapy, and drive home while everyone whines that they’re hungry, they’re late to baseball, you missed school play, they hate the car.
No one dreams of one day parenting a child who needs you to feed him, diaper him, speak for him, advocate for him, play with him, soothe him, cry for him — at age twelve.
But you get so much back.
The starry-eyed Pollyannas gush that your child is so lucky to have you, that God never gives you more than you can handle, that you’ve become a better person, a better parent, you’ve gained so much from having this child. And some of that may be true, depending on how much you’ve had to drink that day and whether the housekeeper showed up to clean and the aide showed up so you could get a nap, and of course you love your kid, but there’s this huge cloud that just rains on you all. the. time.
It’s the cloud that says, Sure, you got to write a book about parenting and meet amazing people and know that love is truly limitless in a way that few people ever even dream of. But what did your kid get? A crappy disability. A disease you hate. A syndrome you’ve begged God to give you instead. A body that betrays him, a mind that works in ways too mysterious for mere humans to understand.
It’s the darkness that you can just barely keep at bay with big sunglasses and a steady diet of Zoloft and red wine. It’s the incomprehensible rage you sometimes feel when you see happy, healthy children running around enjoying life. It’s the grief that threatens to swallow you whole when your younger child surpasses the older one developmentally.
It is a far, far better thing that I do than you have ever done.
The primary upside on the darkest days is the feeling of moral superiority you can enjoy as you look around the grocery store or the park. You know that you work harder than all of these mothers. You know that they know nothing of what real parenting entails.
Except that one there. The one whose 12-year-old son is wearing a helmet that’s clearly not a bike helmet. It’s a helmet to keep him from crushing his skull when he bangs his head on the floor repeatedly. That mom knows.
And she could be a friend.