What are the challenges of raising a child with an invisible disability?

What are the challenges of raising a child with an invisible disability?

Barbara Claypole White, Bestselling 

The biggest hurdle is taking the show on the road. When your child spirals in public, strangers will judge his behavior and critique your parenting skills. Loudly. Flying used to trigger my son’s obsessive-compulsive disorder big time, and we graded his anxiety on a scale of one to ten, ten being baton-down-the-hatches-ain’t-nothin’-we-can-do. But his psychologist trained me well, and when that ten was building, I could help…provided no one interfered. But other parents and grandparents love to interfere on flights. Even now, it’s instinct to book a window seat for my son so that he can have privacy.

Other people’s opinions are exhausting when you’re already close to breaking point. I remember one teacher who was determined to prove my son had food allergies, even though a child psychologist had diagnosed OCD. Another teacher called one night to demand I take my son off his new medication because he was hyper. He was, and the psychiatrist weaned him off one SSRI and on to another, but the teacher reprimanded me instead of offering constructive concern. She reduced me to tears even though she knew what a tough decision it had been to consider meds. You learn quickly that other people often have their own agenda with this stuff.

Fortunately we found an amazing school—a perfect match. The first question the admissions officer asked was, “What do we need to know about OCD?” I typed up a list called ‘OCD 101’ and kept staff updated about med. changes and shifts in our son’s anxiety. There’s no way around it: you have to become your child’s mental health advocate. Oh, and let’s not forget how little coverage most insurance companies offer for mental health treatments. At one point a friend of mine was spending more on meds than on the mortgage because her daughter’s psychiatrist had recommended a prescip. their insurance wouldn’t cover.

Obviously, all this demands endless self-education and patience, and if you’re not careful, there’s no energy left to keep your marriage strong. The divorce rate for families like mine is 80%. I watched every marriage in my local support group fail (except for mine and one other). How did my family survive? For starters, I was a full-time parent with one child, which is a luxury few can afford. I also took over our son’s treatment like a woman on a mission, telling my husband I would do the work if he would support me 100% and never countermand my responses to the OCD. He agreed, but was permanently on-call. One time I interrupted him during a dinner meeting to scream, “I’m losing it.” He was home within half an hour.

In addition to watching out for your marriage, you need to be mindful—sorry, couldn’t resist—of your own wellbeing. An exhausted caregiver is a useless caregiver. Never feel bad for walking away. That’s a much better option than punishing your child for behavior he or she can’t control.