You know what’s hard? You know what is grinding down for the parent/guardian of an adult with intellectual disabilities and multiple medical problems? What is really hard is the stream of Good Samaritans wondering if they should help/intervene and who don’t actually hesitate to do so. Don’t get me wrong — I love that Good Samaritans exist and I totally understand why they approach my daughter and I sometimes. But I’d really like them to understand what’s going on, and I don’t usually have time to explain.
So, I’ll do that now.
Next time you’re at Stadium Station in Edmonton, for example, in the afternoon maybe, and you see that odd couple, the burly fifty-something guy, and the special needs girl who looks about 15 (but is actually pushing 23) — When you see them, go ahead and talk to the girl in baby talk, ask her if she’s okay. Go ahead and ask the guy in your best good cop voice if the girl has a regular doctor. Go ahead and diagnose her spitting up on the sidewalk as a symptom of her anxiety. Go ahead and keep your worried eye on the two as they hurry to their vehicle and drive away. And try to forgive the guy for being brusque, because:
The girl has a nasty auto-immune disease which makes her intestines bleed at times, and which also makes her umpteen specialists at the U of A Hospital very attentive to her care. She also has a nasty summer cold and a urinary tract infection. She has a hair-trigger gag reflex: a single cough or sneeze can make her puke on the side walk, with or without anxiety. One time she had a coughing bout on a rush hour LRT and the old guy managed to fish a grocery bag out of his omnipresent bag of supplies, catch her puke in it, and bustle them both off the train at the next station, deftly tying a knot in the bag and dropping it in a garbage can on the platform. I don’t suspect anyone on that crowded train realized what had happened.
The girl wears adult diapers because of urinary incontinence. The antibiotics for her current UTI have messed up her gut. At the moment you approach that odd couple, she has excrement in that diaper because she had a bathroom break at the Legislature five stops ago and she’s not so good at cleaning herself at the best of times and security guards and sheriffs tend to intervene when a fifty-something guy and an apparently fifteen year old girl go into a public washroom together, so she was on her own in the ladies’ room at the Legislature.
And, at that moment, you intervene, and she coughs and pukes. He’s simply trying to get his daughter to move with some haste, without tantrums, so that they can get home to the shower-head in the bathtub, the commercial-sized washing machine in the basement, and privacy, before the shit makes its way to her already bacteria-filled urinary tract.
Please forgive the guy for being brusque, and, please, don’t stop trying to help. But also please try to understand that your intervention may be nothing more than an interruption of a procedure, a protocol if you will, that has been developed over two decades of damned challenging parenting. Again, please continue to be a Good Samaritan: the world needs you.
But also please try to realize that you may be missing a whole lot of backstory when you step up to help.