I saw this post today while cruising on Facebook. It’s from the Washington Post. It’s entitled: “4 things parents of kids with special needs wish you wouldn’t say.”
The author, Mari-Jane Williams, begins with a description of her son, how he’s like many 10-year olds in most ways, and then segues into that moment when people find out he has autism. The four most offending reactions are (says Mari-Jane):
1. I’m sorry
2. Wow, you’d never know it to look at him
3. All kids do that/struggle with that
4. I don’t know how you do it
I go back and forth on this one. On the one hand, it’s hard for people not to feel some pity for a situation that warrants it. Having a kid with special needs is sometimes pitiable. There’s the mourning of the kid you “could have” had, the hours/money spent on therapy, the higher levels of alertness required to keep him safe, etc. But then there’s the fact that this child is my son, and though I hate his disorder, I love the kid. I’m not sorry for Jacob. I’m proud of Jacob.
Wow, you’d never know it to look at him:
Autism is a non-obvious disability. Our kids don’t usually have wheelchairs, or seeing-eye dogs, or need canes or walkers. That being said, some of them do wear headphones a lot of the time. 😉 I think if you find a child with autism and “you’d never know it to look at him,” then its hats off to the parents, the siblings, the teachers, and the therapists that have helped this child blend in so much with “typically-behaving” children. I’d take this one as a compliment.
All kids do that/struggle with that:
I agree with this. All (most) kids potty train – but my son was still in diapers at 8. All (most) kids learn to speak, but Jake was years behind his peers when it came to developing functional speech. All (most) kids learn to control the sensory input coming in from all angles around them, but Jake still wears headphones, CANNOT use unfamiliar toothpaste, and breaks down in tears if he finds his glasses have been on past 8:00 p.m. The struggles, and the magnitude of those struggles, are very different from that of a typical child.
I don’t know how you do it:
This one bugs me. It’s right up there with “God only gives special kids to special parents.” What a load of crap. I hate the idea that I was somehow more deserving of a child with special needs because I’m a wonderful guy. There are plenty of kids with special needs who do NOT have special parents; parents who ignore them, abuse/mistreat them, etc. In response to “I don’t know how you do it” – I always think, “I don’t remember being given a choice.”
In my own life, I used to cringe when I heard, “My cousin’s sister’s college roommate has a nephew with autism, so I know EXACTLY what you’re going through.”
I guess you could say I’ve softened, because I’ve come to realize that people feel compelled to say SOMETHING, and I now appreciate the attempt to forge a connection between us; an effort to make me feel less alone, I guess. It’s like when you go to a funeral and ask the family of the deceased, “How are you doing?” How do you think they’re doing?!? And they always say, “I’m OK.” which must be the furthest thing in the world from the truth. It’s just the phrasing we use for “I’m really sorry for the situation you’re in. I love you. I’m sorry you’re hurting. There’s nothing I can say to make it better, but I want you to know I would say that thing if it existed.”
My hope and wish is that people would take the opportunity to ask questions. I’m happy to answer questions, dispel myths, offer insight and clarity. Mari-Jane has a follow-up article about what she wishes people WOULD say, which includes offers of babysitting, but I think that’s a stretch.
When you meet someone with a child with needs, what do you say?
If you’re a parent of a child with needs, what do people say that tick you off?