For parents of kids with special needs, high functioning is hard too

Often when people hear that I have children with special needs, one of the first questions they will ask is, “Are they high-functioning?” I love when people ask me questions about my children. I appreciate the brave soul who looks past our strangeness and instead of fleeing or ignoring, has the fortitude to try to understand us. So, muchas gracias, people with questions!

High-functioning sounds like a positive, so we see it as a silver lining to a difficult situation. It's also a term that many of us hear frequently in association with people who have disabilities, so perhaps we feel comfortable tossing it around. Maybe, in fairness, some people may not know what else to say. So they look on the bright side and ask this, because it feels like something good that they hope applies to us.

An acquaintance I saw at the zoo once asked this about my now-9-year-old (who dwells far, far away from the land of high functionality). My child was in nuclear meltdown mode, screaming and tantruming on the ground because the full-to-capacity zoo train had left the station without us. Our conversation went something like this:

Me: Good to see you! This is my son, who has a rare syndrome and autism. Her: OK, got it. So is he high-functioning?

I remember gazing at my flailing, bellowing red-headed toddler, splotchy from kicking up a mad stink in the line for the zoo express on that overcast fall day. I didn't even know how to respond. One possibility I wish I had thought of in the moment: “If by high-functioning, you mean unable to tolerate disappointment, wait his turn, or communicate effectively, then yup, he has totally nailed it.”

I hate to be the dark looming thunderhead in this situation, but I am about to rain on this parade. High-functioning doesn't mean easier. I know, because I have two children with special needs, one at each end of the spectrum.

High-functioning simply means you have a different kind of hard.

In some ways, high-functioning is actually harder because people expect more from a kid who appears pretty much “normal.” When people see my obviously mentally impaired son, they don't expect the same things of him as they would from a typically developing kid.

For me, it means that my high-functioning kid is able to join in a typical preschool and a Sunday School class, and play with neighborhood friends, but will act completely inappropriate for his age at times when he is anxious or afraid. It means he is not fully potty-trained at age 5, and doesn't care to be. It means we have loud public meltdowns about shopping at Costco or sharing toys.

High-functioning means that some of the time you look the part of a regular kid, but much of the time you are acting very much like a person with special needs. For a parent, it's not easier. It's just different. It's an unexpected, challenging ballgame, whose rules I don't fully understand.

So this has become my policy: If I see a “normal” looking child acting wildly inappropriate for his age, I don't blame the parents, who probably need respite and understanding more than they need judgment. Instead, I consider that there may be more to this child than I can understand by looking at him.

And I give inward thanks for those who give my high-functioning boy the same consideration.

Megan Goates is a Westminster College and USU alumnus, a mother and a blogger.