Friday, June 18, 2010

Our hopes for our kids (and the dreams we dare not have)

So, something started bothering me about yesterday's post on Zach Anner, the guy in the lead for Oprah's Your Own Show competition who has cerebral palsy, after I read a couple of comments here and on Twitter comparing Zach to Josh Blue, the winner of 2006's Last Comic Standing, who also has cp.

Why, I thought, do we instinctively compare Zach Anner, a funny guy who happens to have cp, to another funny guy with cp? Why didn't any of us compare Zach to, say, Dave Letterman? Or Chris Rock? Or Jon Stewart? Why did we have to compare a guy with a disability to another guy with disability?

And why do I want Max to only grow up to be like Zach? I mean, of course, it would be awesome if Max had Zach's humor and charisma (well, Max already has plenty of charisma, he just can't get the words out). But why am I not thinking that I want Max to grow up to be like, say, President Obama? Or Bill Gates?

I suspect this is not a problem with a lack of imagination. I think it's that sometimes, when we dream about what the future may hold for our kids, we don't let ourselves dare to dream big. We've dealt with disappointment. We don't want our hearts to get demolished again. Some of us may have been worked over by pessimistic doctors, like the ones we dealt with in the NICU, doctors who permanently handicapped our hopes for our kids. Maybe some of you are like me: really pragmatic, head full of research and medical information and doctors' reports. We know that the odds are against our kids. Or maybe we're just so caught up in the day-to-day realities of caring for our kids and their many needs that we just can't see that much past it.

And so we end up hoping that, within the realm of the world of disability, our kids will fly high—instead of hoping that they will soar in the mainstream world. Maybe we just hope they will function and be happy, period; there have been times when I've thought that I will be plenty content if Max grows up to live independently.

So here's what I'm daring to hope tonight: I hope Max grows up to have Zach's sense of humor and charisma. And Bill Gates' brilliance. And President Obama's savvy. With a twist of George Clooney thrown in.

I hope Max has all of that, and more. And I'm sitting here hoping the same for your kids or whatever may lie in your dreams for them...if you dare to dream.


  1. I think you're right on all counts - the reasons we don't dream, the reasons we should try, the reasons it's hard.

    I'm afraid to think into the future and I try to avoid it. That's probably a poor strategy!

  2. Oh I can get behind the George Clooney part!! ((HUGS))

  3. Sometimes I daydream about my son's future. We don't have a diagnosis and there is no way to predict out what happens in the future.
    I'm going to be more brave and aim high for him. Thank you for the encouragement!

  4. Hey, guys! My future's so bright, I gotta wear shades...and a mustache!

  5. in a way, there is nothing wrong with comparing Max to others with CP. Years ago I read a book ( also about a child with CP) and someone told the mother that if she measured her daughter and found her lacking, she needed to make sure she was using the right cup. I am sure I will say this my mind, if you compare Max to others with CP, you are giving him a chance to exceed expectations. You are giving him a chance to set the bar for other people with CP ( and others with disabilities).

  6. I think I understand what Sarah means. I think the reason we might compare to "like disability" people is because those people have had the same or similar challenges and were able to "overcome"/deal with/ to lead a successful independent life (whatever THAT is).

    For Max, or my son, to be Barrack Obama or George Clooney is MORE than for them to be them, because our kids have bigger badder challenges in addition. So I think we look to "like disabled" people because that feels like more of a road map than anything Mr Obama had to contend with. Our kids can still be wildly successful, but our road has different (and sometimes deeper) potholes..

    Did that make any sense whatsoever?

  7. Yeah Pia, sort of...

    If I compare my 14 year old with his boy scout peers, he is definitely not measuring up developmentally. However, if I compare him with the spectrum kids in the troop, or with the girl down the street with Aspergers, he is totally "normal". I know that his academic test scores are off the charts (almost), and I really want for him to find a real career where he can thrive and live a "normal" life.There are just days when it seems impossible.

  8. Why was the guy in the red shirt on Star Trek always killed by the end of the episode? Because he (and it was almost always a HE, because the paradigm was that MEN drove starships, and WOMEN were "communication officers") was an "other" and didn't fit in with the rest of the bunch, who were known and loved as part of the unit. And that poor guy in the red shirt? He was often a (cough) "MINORITY"--different from the others! Maybe his race was different, maybe he was a non-human, or maybe he was just UGLIER than the rest of the pack! But he didn't fit in, so he was EXPENDABLE!

    Why does South Park have a black child in their "cast" called TOKEN? Now, that's telling it like it is, in a rather "in your face" fashion.

    Our brains are trained (for better or, very often, worse) to categorize, to discriminate, to group--and the paradigm we're taught to base our comparisons on is something called "normal." Normal (though this is gradually shifting) is caucasian and neuro-typical. However, if the subject is cleaning or cooking, "normal" is a woman (or a clumsy male who can't find the can opener), and if it's cars and trucks, it's men with deep voices.

    Do what I do when I'm bored, and you'll see what I mean. Turn on the TV and analyze every ad--watch the women scrubbing the bathroom or fretting about smells and stains. Watch the men with their deep voices selling you a TRUCK or LIFE INSURANCE (because women aren't good with money, doncha know). It's like a trip back to the fifties, and not in a good way. Very rarely do they step outside the paradigm, and when they do, they're patting their sorry asses on the back for it--see, see? We're not "prejudiced!!"

    But here's the good news--and let me use "black comedians" as an example. Once upon a time, the "black comedian" (the only one White America was allowed to see or hear) was Redd Foxx. There was just one. Then, there was Dick Gregory (who dared to become less funny and more "active") and the ironically named Slappy White. And then came Richard Pryor, and the floodgates opened. But still, we're talking just about MEN....but look around, there are women out there too--the ice-breaker was Moms Mabley; and then came Whoopi Goldberg, Mo'nique, Wanda Sikes, etc...

    Anyway, once upon a time if you saw a "black comedian" on TV, it was a rare event. Now, no one even notices. It didn't happen overnight, though. It's a slow slog.

    I think the key is getting people used to seeing people who do have visible challenges. Answer this question--how many kids did you see in wheelchairs, on crutches or walkers, with diagnoses that encompassed physical or intellectual disabilities, on a daily basis, as a kid? How often did you interact with them? See, society never encouraged inclusion. Unless you had that experience within your family unit, (like I did), you just didn't KNOW. "Those kids" were "the other"--they were the guy in the red shirt--not part of the crew, really.

    It's all about comfort zones. The question is, how does one stretch those comfort zones? It's a great subject for discussion and introspection, too!

    Great post, as always!!!!

  9. Oh, I love what you have to say. And Sarah and Pia, I get what you're saying, too. I inherently know why I look to Zach and others with disabilities—love the term "road map." I was just realizing that I do not ever think about aspirations for Max in terms of successful "typical" men.

    And Sarah, I do what you do, comparing Max to other kids in his class/group. I think we all do that, in some way. It's human nature.

    And Felicia? I've said before that you need a) a blog and b) a talk show. Now I'm thinking you need a book, for all your wisdom.

  10. Someone actually once said Em was "cute for having what she does." Em is cute for WHO she is. For HOW she looks. And it has nothing to do what her medical file says. She is who she is. And she is beautiful.

  11. It is odd that they would compare him to another comedian with CP.

    But in terms of the dreaming, I guess it all depends on how you define success. I no longer evaluate using society's typical standards: the richest, most intelligent or most powerful.

    Perhaps because Ben was my first child, I no longer hold these kind of dreams for my other kids without disabilities -- and I'm glad I don't. Cause I don't think they really speak to who the child is -- but more to trying to fit into a narrow definition of success that valued by our Western culture.

    I hope all of my kids have rich lives -- rich with the joy and pain and learning that is a part of life. I hope they have loving relationships, have work and interests they are passionate about, feel satisfied and happy and good about themselves -- as they are.

    I think many people spend a lifetime trying to achieve these goals -- and many who are conventionally "successful" never do (at least if we are to believe what we read in the media about their lives).

  12. Can I just say, "What Pia said" because I think that sums it up for me nicely. I like looking at people who have similar things to overcome as Charlie. I look at Zach and see some eye issues and a wheelchair, but I also see sandy blond hair and I think of my Charlie. Looking at Barack Obama is a little less stirring although I'm sure he's a nice man--he hasn't had to content with spasticity or a wheelchair or any of that.

  13. I guess since I'm still relatively "new" to the diagnosis (October 22, 2009) I don't tend to compare Jillian with other kids (or adults) with CP. Perhaps because I'm too busy fighting for equality. I actually wrote about how I was wondering if I were parenting my girls differently. I want them BOTH to know that I'm in their court. That because Lauren deals with "Special needs" everyday, I want her in a inclusive preschool. And I don't want Jillian to be segregated from "able bodied" peers. Does that make me weird?

    I think you're doing everything wonderfully for Max. It IS unfortunate that society feels the need to lump 2 "Celebrities" together just because they have CP.

  14. The following is a comment from a wonderful person named Marcy Nordstrom, who frequently emails me cool bits of information and videos (I'm putting up one tomorrow). She has spina bifida. She was unable to post this using her own computer, for some reason.

    As a person with a disability, I compared the two comedians because they both ARE "soaring in the mainstream world". Neither comic has stayed in the pigeon hole that society is comfortable with. These two comics have, in fact, challenged society's labels. And these two have crossed "them" over into "our" world using humor to eradicate that useless line.

    Could others who compared the two comics be seeing it as I did? Thoughts?

  15. I think you're right---it's too scary to dream big sometimes.

  16. This is a really lovely post and has gotten me thinking. I look to autism role models for the hope it brings, but do also need to do a better job of looking past the disability to my son's strengths in and of themselves. Why did I drop my dreams of my son the Harvard educated architect on the day of diagnosis? And who cares if our kids take a little longer to get there? I never want to underestimate my son in an effort to protect my fragile heart.

    This is a great discussion. Thanks!

  17. so true. I didn't have big dreams for my daughter, and I still don't. I just want her to be happy and as independent as possible. I don't have dreams for big careers or high paying jobs... just for her to be happy.

    I guess I have kept myself from dreaming big about my child. I just hope she doesn't keep herself from dreaming big.

  18. I look at this from a slightly different angle. It took my child's diagnosis, and my refashioned identity as a special needs parent, to shake me of some rock-solid preconceptions I had of what makes a successful life. I smile when I look back at the person I used to be, because her units of measurement were so ridiculous.

    Now, all I want for my kids - SN and NT - is happiness. In whatever form it comes. That is the big dream, so far as I am concerned. Everything past that is gravy.

  19. Thanks for posting my comment for me, Ellen. I think I've figured out how to do it myself now...I think.

  20. What a great post. Very thought provoking.

  21. What a challenging post. I agree with some of the other commenters, we compare our kids with CP to adults with CP because they have worked through many of the challenges we are desperately trying to work through now. It is nice to see someone who has been there, done that and succeeded.

    Lately, I have spent a lot of timing thinking about my expectations for my daughter. I am sad to say that my expectations were low! I want to change that. I want her to feel like she can do ANYTHING. Yes, it will take more work to do it, but who am I to set limits on her?

  22. Thank you Ellen for the post and thank you Sarah B for putting out the words that I would also speak.

    It was only after my son was born that I learned to redefine success in a way that made me happy....and that will hopefully make my children ultimately "successful".
    My big dream for my children is that they find in life what makes them happy and pursue that goal bringing to the outcome their talent, diversity and ability....and to find a way over or around barriers that society places in their path to attain what they want whether they have special needs or not.

  23. way to go of thinking out of the box


Thanks for sharing!

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