The second people find out you have a child (or children) with special needs, many of them want to assign you saint status. There seems to be this idea that parents of special needs kids are mild, patient, long-suffering angels put on this planet to make other parents feel like crap if they lose their temper because the kids drew on the dog with a Sharpie. Again.
Well, you can all relax: with few exceptions, I’ve never met a special needs parent who is meek, perfect or mild. If anything, being in this situation brings out the badass in you.
Take, for example, my friend Bonnie (not her real name). The youngest of her three sons has cerebral palsy. Pity her. No, seriously, I dare you. She’ll brush it off with a, “I put on my big girl panties a long time ago.”
Every week Bonnie brings her youngest to the local YMCA for aquatic therapy. He can walk but not long distances and he’ll use a wheelchair that looks like a stroller to get to and from the pool.
Last week she pulled into the last available handicapped parking spot — she has a tag and it’s prominently displayed — and began unloading his wheelchair.
An older woman pulled up behind her and asked, “Are you coming or going?”
“Coming,” Bonnie replied as the nursing assistant who helps her during these appointments unbuckled her son from his seat.
“Well, are you handicapped?” the woman asked.
“No,” Bonnie replied, “but my son is.”
This woman, who is apparently beyond any social redemption, then said, “He’s handicapped but rides in a stroller?”
“Ma’am,” Bonnie said, and as anyone knows, when a southern lady uses the word “ma’am,” she is either being polite or fixing to kick your ass, “that’s a wheelchair, not a stroller and you are being a bitch.”
With that, the lady drove off in a huff. (Oh, don’t cry too much for her. She found a parking spot and made it to water aerobics just fine.)
In my opinion, this incident illustrates perfectly why special needs moms are not, in general, shrinking violets. We wouldn’t last very long on the job if we were.
Because, despite the overwhelming majority of kind and caring strangers out there, there will always be Buick-driving a-holes such as Betty — which is her real name, I would give her license plate number if I knew it — who think it’s acceptable to do things such as question whether we deserve the special parking spot.
Or suggest that autism doesn’t really exist. (That one was said to me.) Or “inform” us that children with neurological conditions would just get better if we spanked them. (Said to a friend.) Or tell us that we are poisoning our child with chemotherapy and we could easily cure her cancer with an all-juice diet. (Said to me.)
It would take the patience of a saint not to get ticked off by such behavior and I have yet to meet a special needs mom who qualifies for saint status. (Unless you’re talking about one of the ass-kicking saints, like Joan of Arc. She was cool.)
Also, it’s not just us on the receiving end of people’s rudeness. When we take our children out in public they are often subject to ridicule or contempt. We stand up for them to teach them they are worth standing up for. The few times I’ve lost it with strangers the message was really for my children. I want them to understand that they shouldn’t feel ashamed or embarrassed by the comments of strangers, it’s the strangers who should be mortified. (Yes, it’s not lost on me that on occasion, I’M the one embarrassing them with my behavior. I’m working on it.)
Hell, I’ve been criticized for not being hard-nosed enough. “You need to be an advocate,” has been said to me more times than I can count. And I have assumed some really ugly masks in the name of advocacy.
I have stood in the school district main office screaming like a lunatic because no one could tell me where to get help for my children. I have yelled at doctors who ordered another blood draw on my daughter, when both her arms were already black and blue, because they wanted to run a test that wasn’t absolutely necessary.
There’s probably some happy medium between pushy and abrasive and meek and mild but I haven’t found it. Like all parents out there, I’m figuring this out as I go along.
And that’s my point: being a parent is hard, period. All moms and dads give of themselves selflessly every day (and a lot of nights) and no one suggests they are saints.
One of the problems I have with this automatic saint status is that it comes with a hint of pity. And while this pity comes from a good place, it’s hard not to take it in a bad way. Because even though it isn’t the intention, the pity implies that my children are burdens I am patiently suffering through.
Oh. Hell. No.
My kids are my heart. They’re my joy. I love them beyond all reason and even when they’re a challenge I’m grateful for them. They aren’t my burden, they’re my privilege.
None of this makes me worthy of pity or assigns me saint status. It just makes me a parent.
Joan of Arc would have loved to have a side kick like you along with her to help her laugh and get perspective on the limitless gaul of the assholes in the world. I would love to be by your side sometime when one of these remarks flies by so I could once say “Stand down, Amanda, have this mocha frap and let me handle this one. ” Not that you need it, it would be my pleasure.
Janet, you are the best!
Thank you for this post! We’ve only had an official diagnosis for my son with ASD for 4 months, but I’ve already been told a million times that I have to be an advocate. I’m still learning how to speak up when it needs to be done. I’ve come a long way, but I’ve still got a long way to go.
That advocate thing is so hard. Sometimes I don’t want to fight for everything. Hang in there and good luck!