Wednesday, May 21, 2014

A lucky kid

Last week, I passed a van as I was driving that had "Invalid Coach" in big letters on the side. I didn't think anyone used that word anymore, but I guess some older associations and companies do. (Disabled Feminists has an interesting discussion about it.) A shadowy figure in a wheelchair sat inside, and I felt awful for that person to be driven around in a vehicle with that label.

It's always a shock to the system to see antiquated ways of describing—and treating—people with disabilities. The world has a long way to go in terms of acceptance, inclusion and viewing people with disabilities as people and sometimes I get frustrated, as I did this weekend when that mom on the street glared at Max. But at times, I'm reminded of how far things have come and how lucky Max is to be living now, instead of decades ago.

It happened again on Monday, when I picked Max up from school and took him to see an ENT. He's been stuffy lately and one of his speech therapists recommended it. Max no longer gets fazed about seeing doctors, and he compliantly sat in the waiting room till he was called in although he did ask the nurse to refer to him as "fireman." When the nurse finally announced "You're next, fireman!" Max flashed her a grin and trotted into the exam room.

The doctor, a soft-spoken man who appeared to be in his late sixties, looked Max over.

"Uh aah?" ["What's that?"] Max asked, pointing to a light.

"It's like a flashlight, to look into your nose," the doctor explained.

Then he asked, ""How old are you, Max?"

"Ire-an!" said Max. ["Fireman!"]

"If you don't mind, could you refer to him as 'fireman?'" I asked, sheepishly. At which point Max jumped up from the chair, walked over to his backpack, pulled out his iPad and navigated to the speech app where he'd typed "I want to be a fireman when I grow up." He pressed a button and the iPad spoke the words.

"He wrote that?" the doctor asked, incredulously.

"Yes, he wrote that," I answered.

"He's bright!" he said, again sounding surprised.

"Oh, yes, he's very bright," I said. "Max, tell him how old you are!"

"Ire-an!" said Max.

"Fireman, please tell him how old you are."

Max typed "11" and the doctor nodded.

Happily, Max's tonsils and adenoids are fine. The doctor extracted a hardened ball of wax from one ear the size of a pea (I'm not exaggerating) and Max was fascinated.

"That's gross!" I said.

"Impressive!" the doctor said.

"Ire-an ax!" said Max, and he cracked up.

"What did he say?" the doctor asked.

"He said fireman wax," I translated, dutifully.

"Ahhh, he has a sense of humor!" the doctor said. No kidding! I realized he was viewing Max through sepia-colored glasses. He'd been raised and trained at a time when people with disabilities were thought to be lesser human beings, and although he's an excellent doctor, he didn't seem to have evolved past that mindset.

It made me glad for the many doctors Max sees who did get the memo about people with disabilities. Max is lucky to live in a time (and an area) where we have a choice of MDs. He's lucky that there are good therapy options. He's lucky to have insurance coverage that by law cannot exclude people with pre-existing conditions like cerebral palsy. He's lucky to have technology that enables him to express what's on his mind, and his firefighter intentions.

I don't sit around thinking about this much, particularly because I don't have much free time to a) sit around or b) think. But when I do, when an incident forces me to realize how lucky Max is, it gives me a lift. It balances out those disheartening times when I feel like I'm climbing mountains to get others to accept Max for who he is.

I'm sure people in my life think it's unlucky that I had a child with disabilities. I don't, though I don't think Max's stroke at birth was a stroke of luck. Earlier in the waiting room, I'd filled out paperwork, and my heart lurched when I got to one question on the medical history form: "Have you ever had a stroke?" I checked off "Yes." I know now that stroke affects about one in 4000 newborns. Max was one of them.

Yet again, there's luck, because Max is doing so much better than the doctors thought he would and he continues to make good progress. This is because of excellent doctors, therapists and teachers along with mine and Dave's efforts, yes, but there's a lot of luck in terms of how Max's brain functions despite the damage. We're also lucky that Max's seizures are under control and that he's physically healthy. And we're so lucky that he has such a cheerful disposition.

"He's a very funny kid," I agreed.

And I'm one lucky mom.


  1. I totally agree - we are lucky to be in the world today (although of course we still have a ways to go). I cannot even imagine what it would have been like raising my son even two decades ago. It would have been very isolating.

  2. Invalid Coach? You're probably just pronouncing it wrong--it's "inVALid", not "INvalid". Because even the company realizes they haven't yet come up with an appropriate term. Come to think of it, "coach" is pretty outdated too. What's it powered by--a matched pair of dappled grays?

  3. There are a few words that could do to be removed from the vocabulary. I hate "wheelchair bound". Our son BJ has Cerebral Palsy and uses a wheelchair. Although when he is at home he bottom shuffles, walks with our assistance, his wheelchair is a wonderful form of mobility for him. It is a positive in his life and something he is quite possessive about now that he realizes what it provides for him. Would I like to not have a wheelchair? Why yes I would, but it is part of our life and we are lucky that BJ can use it so expertly. There was a time when he only used one hand and went around in circles.

    We are definitely lucky to live in a country where we have medical assistance, therapy and BJ is a valued member of our society. I was reminded of that recently when I met with a journalist from Korea who was interviewing me about access in Australia. She said how lucky we are in Australia as in Korea the mindset and what is available to families is very different and limiting.

    Great blog.


  4. Ellen....
    "But at times, I'm reminded of how far things have come and how lucky Max is to be living now, instead of decades ago." Yes. Decades ago, you might have given Max up to some instruction. My Grandparents did with their two ill/physically disabled children. Wrong and sad as it may have been. That was what people did decades ago. To this day, however, I know that my Grandmother carries with her deep, penetrating regret for giving away her babies. Didn't I mention that "special needs" runs in our family?! ;)
    By the way, I would be impressed by Max's accomplishments. Just as I am with my youngest brother, Michael, who has Down syndrome!! He amazes me every freakin' day!! But then again. I am also impressed by "Amethyst", my "normal" two-year old niece!! ;-D
    Sorry. Long comment!! ;-}
    Love you later, Raelyn

  5. I think about how lucky we are to live now instead of decades ago all the time. I know that my son would not be as accepted and helped years ago when they thought autism was caused by the mothers not caring. Here's to progress and good doctors and more and more people realizing that people with special needs deserve respect and have senses of humor, dreams, fears, and all of the stuff that we all have. Great post, Ellen.

  6. I think my MIL, who gave her Downs baby up to the state at birth back in the day,is completely thunderstruck by my nonchalant and open raising of my two SN guys (one dyspraxic and presents like mild cp, the other ASD). She's not evil or cruel, she's just conditioned by a different culture.

  7. Max has an awesome sense of humor! He cracks me up, I know that.

  8. He's lucky to have you, a great doctor, and so many fans (me included).


Thanks for sharing!