Michelle Cottle has a particularly insightful piece about parents of special needs kids. The article is billed as a warning of the upcoming funding crisis given the explosion in special needs children. But it’s mostly not. What it is is an unusually sympathetic and accurate description of what it’s like to be a parent to a special needs child — especially our fears for the future.
Two things strike me as I read this.
Like many parents of special-needs children, Sidney found herself swallowed up by her child’s condition. “Your whole life revolves around figuring out what to do to help him,” she says. Quitting her nursing job, Sidney drove Livingston to endless therapy sessions (with his infant sister, Maggie, in tow), enrolled him in an early-intervention program, and put him in a mothers-day-out class to help his socialization. Told that Livingston would never swim or ride a bike, his mom signed him up for swim lessons and literally strapped him to a specially outfitted bicycle until he could ride like a pro. “The more they told me he wouldn’t do something, the more I took him to do it,” she says.
Balancing my own career (which I am trying so hard not to give up), the needs of my healthy children, and the needs of my disabled kid has become the fundamental struggle of my life. I am afraid to give everything I have to my disabled child and sell everything else short. I am afraid not to throw every possible therapy at him, hoping it can make his life even a little better. I don’t want to let my life get swallowed up in his care, and I don’t want to miss an opportunity to get him as functional as he can be.
Another thing that strikes me is my own pettiness. In many ways I am now more sympathetic to people with disabilities and parents of kids with disabilities. And there is a way in which I have hardened. Reading the related link about Buzz Bissinger’s book about his disabled child, my feeling was not happiness that the story of being a parent of a disabled child will be told by an author I admire. It was, “Who are you kidding? Your kid can walk and talk and joke and read. He has twice the mental age my kid will ever have in the best case scenario. I don’t want to hear you bitching and moaning about how difficult it is.” In Cottle’s article, she describes another parent of disabled child:
Not only are parents overwhelmed by the practical matters of caregiving, they often have a tough time relating to people with “normal” children. “When people call you and are like, ‘Oh, I’m so stressed out, my plans for Disney are falling through, blah blah blah,’ I can’t relate to that,” says Toucey. “I’m like, ‘My kid stopped eating three weeks ago and is on a liquid diet, and we’re wondering if we’re going to have to put a feeding tube in him.’”
And I think, “‘blah, blah, blah,’ I can’t relate to that. I’m like, my kid may never not have a feeding tube. He may never eat anything by mouth. I would love to have him on a liquid diet.”
I hope with all my heart I get over thoughts like this. I do appreciate how difficult it is for anyone who has had to discover their children will not be what they expect, and have had to find ways to cope. And that raising my kid is still easier in many ways than for many, many others. But there are bitter moments where I don’t remember.