I embrace the term “invisible” disabilities to describe our kids with ADHD, and other mental health conditions, developmental disabilities, or behavior disorders that are manifested through internal stuggles or behavior, rather than being clearly visible in their bodies, or on their faces. The invisibility of our kids’ issues is what leads to so much misinformation, judgement, and blame. Our kids often appear to simply be defiant, bad, naughty children, and we appear to be indulgent, lenient, ineffective parents.
Sometimes I’m reminded that my own daughter’s “invisible” disabilities—ADHD, mixed mood disorder (mostly anxiety), sensory processing disorder, borderline intellectual functioning, and the fetal alcohol syndrome (FASD/FAS) that is probably responsible for causing most if not all of the above—are more visible than I think. In my more contemplative moments, I wonder: Is it a good thing or a bad thing when Nat’s disabilities show?
I think it’s both.
My latest post on my ADDitudeMag.com blog describes a recent incident where another parent came right out and asked me, “What kind of special needs does your daughter have?” My first reaction was to feel intense pain for Natalie--who just wants to liked, to have friends, to fit in-- that her disabilities were so obvious that a stranger felt free to ask about them. After some thought, I also saw positives. If adults, such as teachers, who are involved in her life can see that Natalie is different, they’ll be more likely to excuse certain behaviors, and to provide the type of help and accommodations she needs to succeed. A proven problem for kids with fetal alcohol syndrome, in particular, is for adults to have too high of expectations for them; to think they are capable of more than they are; and to withdraw supports, or fail to provide supports, that they desperately need, leading them to fail, often in very serious ways (Prison, anyone?). In the case of adults who see Natalie in passing, and see clues to her disability, I’m the one who benefits, as they’ll be less likely to judge my parenting skills, or lack thereof.
To me, Natalie is just Natalie. I tend to forget that some of her behaviors are a little quirky. Often, if we’re in the grocery store together, I’ll catch people staring, and will be jolted back to reality. Oh, yeah. No other kid, especially an almost-12-year-old, is flapping his/her hands, sneaking in a hop or a skip while walking excitedly ahead of a mom who keeps repeating, “Stay with me. Stay with me.” No other kid is emitting random, loud, strange noises, getting too close to other people and then staring into their faces. Asking them pesky, intrusive questions. (And that’s when she’s behaving perfectly!) (And no, despite the hand flapping and such, she doesn’t meet the diagnostic criteria for anything on the autism spectrum, although one mental health practitioner thought she has PDD NOS, and, and according to our neurofeedback practitioner, her EEG readout shows she has Asperger’s.)
And Nat does have some facial dysmorphology, suggestive of an intellectual disability, although, according to the trained eye of, and careful measurements done by a geneticist, that dysmorphology does not include any of the facial features that are the trademark of FASD. (Do any of our kids fit perfectly into any diagnostic box? But that’s a whole other topic.) I think even non-medical types probably notice Nat’s facial differences.
Other than “naughty” behavior, does your child's “invisible” disability stay invisible? What shows, and what doesn’t? Do you see positives, negatives, or both, when the cloak of invisibility falls?
Kay Marner is a freelance writer specializing in ADHD, its common comorbid conditions, and special needs parenting. Marner co-edited Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories. She's a regular contributor to ADDitude magazine, and writes an ADHD parenting blog, My Picture-Perfect Family, for ADDitudeMag.com
(image from zazzle.com)