Sunday, October 24, 2010

A shock to the system

I'm out having a rare lunch with two old friends. Other than my family, they know me better than any people. They have been my emotional pillars during the early years with Max, when I was out of my head with grief and anxiety. They care deeply for both of us. 

One friend is telling me that her son's class has two kids with special needs, both of whom have aides. "One of them is deaf, but otherwise he is typical," she says. "And the other kid has cerebral palsy, but not as bad as Max has it. He can talk, and his hands are fine."

I'm startled. She is just being matter-of-fact, but the words "not as bad as Max has it" are jolting.  

I say nothing. Suddenly, though, I am having one of those conversations in my head. Why am I so sensitive? Maybe it's a good thing that she feels she can be so matter-of-fact around me, unlike some other friends who still seem uncomfortable when the subject of Max and his disabilities comes up. I wonder how she's seeing Max these days. I think he's making great progress, but I am not sure it seems that way to her given that, as she's just noted, Max can't exactly talk and his hands are still screwed up, to use the technical term. What is this kid with not-such-bad cp like, anyway? What would it be like to have a child with cp who is "not as bad as Max"? I think he's doing just fine for himself, but clearly, she doesn't. Unsettling. 

Soon enough, I'm sucked back into the conversation with friends. But I am unhinged. And still, I keep wondering:

When will words stop jarring me? 


I blog daily over at Love That Max.


  1. That would jar me too!
    That's a very insensitive way of describing this other child in relation to Max, and particulary when it's a good friend whose known you guys since Max was born. There are times when people refer to my son as "low functioning" and it drives me insane. I don't see him that way. Highly challenged, yes, but not low-functioning and not pigeon-holed. I might have told that friend that she hurt my feelings.
    I don't think this is "your" issue with words, but someone else's issue with not thinking! Hugs xo

  2. Ouch. I was recently over the moon that Pudding could finally string beads, when her OT brought me back down to Earth with her recent assessment. I don't want to see her through other people's eyes, I like the view from my own.

  3. that would have stopped me in my tracks as well. I think Louise is right - as you mentioned in the post, this sounds like a friend who is comfortable enough with you to say things without thinking about how it might sound to you. But it's hard hearing the words from someone on the outside. I don't think the words will ever stop jarring me.

  4. Interestingly, I used to teach a class of kids with mostly CP using AAC devices. One of the girls, who your friend would have thought had "bad CP", couldn't walk or talk and had limited use of her hands. However, she's reading above grade level and is in gifted classes.
    Words always hit me hard if I'm not the one using them. I can tell whomever needs to hear it about my kid and his issues (especially when necessary for resources and such) but it hurts my heart to hear someone else say it. I've realized this is mostly my issue, as my friends try their best to be so considerate when it comes to Will.
    I did come to the realization recently that words can be equally jarring for me to hear even when it involves Will's siblings without special needs or powers. ;) We're moms! :) And we're moms who have to hear things more frequently than the norm because our kids were born with something extra. Waaay too often, honestly.

  5. Those words are insensitive to say the least, and I imagine you'll hear many of them over and over as you move through life with Max. And I also imagine that you will become a bit more resilient -- I know from your writing that your sense of humor is intact and that you are a wise and warm mother -- these things will sustain you.
    Besides, isn't it all relative? I just saw a friend who met you recently in NYC, and we both shared how "great" Max is, compared to our two children.

  6. I couldn't bear to say something, but if this happens again, I will. And, I know, the words will never stop. Yes, Elizabeth, I hope I get more resilient. And I guess it is all relative, although I would never say to another parent "not as bad as ___ has it."
    I totally forgot to tell you about meeting your friend at that conference, off to email you now!