Monday, February 13, 2012

Getting people to see the ability instead of the disability


"Wow, he can dance?"

That's a 10-year-old talking who stopped by the other day; she lives in our neighborhood and came over to say hi to the kids. I'd told her that Max was in the family room rocking out to "You Might Think I'm Crazy" from Cars 2, as he loves to do.

"Yes, he can dance and he's got moves!" I answered, and brought her in so she could see for herself (and Max could show off, which he did).


It's the sort of thing that happens regularly, a kid or adult truly surprised by Max's abilities or even his personality.

"Oh, wow, he can read words?"

"It's so cool he has a sense of humor!"

"That's great that he can tell you what he wants for lunch!"

At times, it's painfully clear just how low people's expectations are of Max—especially when it's from people who know him, less so from people who don't. Last night, I went to a book club meeting. It was my second time there, and I mentioned that Max has cerebral palsy. Another mom said she knew a kid with CP who had been involved in a bike training program and offered to get me info. I said yes, because I thought maybe the program had other sports training, and then I mentioned that Max had a bike he rides really well. "Oh! So he can already ride a bike! That's incredible!" she said, and I heard the amazement in her voice and I understood. Before I had a child with cerebral palsy, I didn't know about the wide range of abilities you can have with CP.


This is one of the toughest things about raising a child with special needs: Getting people to see our kids abilities and possibilities, rather than just seeing their challenges. There are many stereotypes, preconceived ideas and doubts to push past. People have their special needs goggles on, the ones that make them see only the special needs and not the kid


My son has his challenges, but sometimes his greatest handicap is overcoming people's dubious perceptions of his abilities. It's as if he's disabled twice—first by his physical and cognitive disabilities and then, by the way people underestimate him. Max and I have much to prove to the world about his strengths, his talents and his general awesomeness.


This is one reason I have an over-the-top reaction when parents of kids with special needs refer to them as not "normal." Max and children like him have enough to overcome in this world. As parents, I think we should talk our kids up as best we can. That's not to say we shouldn't mourn or despair; we all do, it's part of the road we travel. But our kids deserve for us to be their best spokespeople—their spokesmoms and spokesdads, you could say. And so I am there to gush about Max's growing reading skills, his mastery of the iPad, his amazing memory and, oh yes, his dance moves. To help people see what he can do, rather than what he can't.

I do this because I'm his mom, of course, but also because Max deserves it. He's amazing not only because he is a kid who has beaten odds or surpassed expectations, but because he's got awesome abilities in his own right—just like any kid.

29 comments:

  1. Stereotypes of any sort are so limiting.

    For the "stereotype-er" and the "stereotype-ee". We always miss treasure when we perceive a unique individual (and we are all unique individuals) through the limiting lens of stereotype.

    We - and our kids - do the world a BIG favor by zapping the *%#@% out of the stereotypes of everyone in our circle -just be being who we are.

    Let's follow Max's example - Rock On!

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  2. Lovely blog, how like my mother and father you sound.

    I have been an "ill" child all my life, I don't like the D word. I have had childhood arthritis, not at all like old persons arthritis, kids arthritis is the immune system attacking every thing in the body from joints to organs at times.

    I could never run, or jump but I built a cracking lego town! My parents always encouraged me to utilize what I could do like you do with Max, play with lego, keep my hands moving. I loved playing the keyboard, loved music. I rode a tricycle every where, my parents would never allow me to use a wheelchair, I either walked or rode wherever.

    Clearly you do very much the same for Max.

    My only point I will make as I am now an ill adult, it is difficult, we have been trained to believe we can, we believe we can look good so we make the effort, dress nicely, we believe a wheelchair is god awful and work hard to keep out of them. Then there is the cotton wool parents, wrap their ill child up, tell him or her what he can't do, reinforce his difficulties, his illness, make a big deal of hospital stays and visits. Put them in a wheelchair because it is easier for the child. The cotton wool brigade grow up and reinforce society view of disability, that disabled are weak, are in wheelchairs, dribble, slump,where old fashioned clothes, have a I can't attitude. So when the non cotton wool children grow up we have a tough time, we try every day to look as "normal" as possible even if by 5pm we are exhausted and drop asleep with no tea through exhaustion. We are deemed as not worthy of carers, support, doors are not held open for us at shops so it takes us a whole minuet to prize the door open with weak arms etc. But you know what I wouldn't change any aspect of my life, I am married, have a son and lots of lovely well friends.

    Do I ever wish I could give in and sit in a wheelchair like my doctors suggest I should, hell no, do I wish doors were held open for me as it is painful or difficult to open them, hell no I feel chuffed I look "normal" that day.

    Go go go Max, life is out there and with a can do attitude clearly your parents are giving you, all those things your parents wonder if you will ever have, I can say you will, their hard work will pay off. I don't think my parents ever dreamed that I would be in a relationship with a well child,educated and happy. Keep going Max's parents, so glad I found this blog, more can do parents with ill children or can do ill adults need to get their blogs out there and raise awareness.

    x

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  3. He looks absolutely adorable! I love his hair and smile... Thanks for writing this, I really needed to read this today.

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  4. Speaking of dancing...

    Here's what members of the Teens Take Charge group of the Hydrocephalus Association chose to put on the back of their t-shirts:

    http://www.hydroassoc.org/store/products/teens-take-charge-t-shirt/

    "Life is not about waiting for the storm to pass, it is about learning to dance in the rain."

    The front of the shirts say "Teens Take Charge"

    Oh, Yeah!

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  5. Beautiful post! We love Cars 2 over at our place too :)

    I totally understand; we get this a lot too. People are always overly surprised by what Norrin can do. And at times, I feel like I need to talk up all the things he can do, because people expect to little. This line especially hit home for me - "My son has his challenges, but sometimes his greatest handicap is overcoming people's dubious perceptions of his abilities. It's as if he's disabled twice—first by his physical and cognitive disabilities and then, by the way people underestimate him."

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  6. I love this post. Thank you so much for sharing it. My son ( who is also named Max! ) is so smart and on it and I hear plenty of times how impressed people are that he can do certain things and I know it's coming from stereotypes that they think he fits into. My son is not a diagnosis. He is an individual. Just like I am. I have strengths and weaknesses just like everyone on the planet. xo

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  7. As a mom, I get what you are saying, but even you write, "...he is a kid who has beaten odds or surpassed expectations," so maybe that's just what other people are mean, even though it might come off differently to you.

    Plus, everyone is shaped by their experiences, which may be limited when it comes to special needs populations. Reading your blog has definitely added to my understanding of cerebral palsy and parenting special needs children.

    Its great that you can advocate for your son as well as share your perspectives with so many on the blog.

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  8. i have to admit that i was guilty of underestimating my own 4 year old son, who has CP.

    i went to therapy to help me deal with these issues of mine, and it inspired me to start to teach my son to read. before then i had just assumed that he couldn't. imagine my surprise when he learned to sight-read about 10 words in a week, once i started teaching him! this was my big lesson--rather than focusing on my son's disabilities, i have to learn to see him for who he is, and to let him show me himself what he can and cannot do. and maybe when we think he can't do something, we just have to work together to find another way.

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  9. I need your help getting more attention to this.

    Junkman's Daughter in Atlanta kicked a family of a medically fragile 3 year old child out of their store because they cannot walk and the child was too heavy for the parents to carry.

    The following took place over the weekend.

    "We went to a store called junkman's daughter today. They said my son was not allowed in the store because he could not get up and walk, no strollers allowed. The people s...hopping that heard left because they were upset he was not allowed in. I wish i could get them to change their mind. I used to really like the store. I explained to the manager, I can't carry him because he is almost 3. I told them his wheel chair is big and bulky so we try to use his stroller as much as we can. He can not even sit up on his own. We have a handicapped pass also but they didn't care"

    http://www.change.org/petitions/junkmans-daughter-please-allow-special-needs-kids-to-use-medical-strollers-in-your-stores

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  10. We parents would love for our children to have smooth rides into adulthood and for the rest of their lives. But we can't learn very much from smooth rides. Those bumps and detours suck, but they definitely teach our kids how to cope in less than ideal situations, and how to think outside the box; how to be empathetic and caring.

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  11. Rock. On. Max! He's got better dance moves than I do (okay, so I've got none)!

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  12. What a beautiful post! Yes,yes,YES! Let our children be children! I always hated people using the diagnosis as a name..."the CP kid"...but we shouldn't think that way either. We shouldn't limit our kids by our perceptions.

    Yes. Let us celebrate our children's abilities! Then maybe people's perceptions can be enlightened.

    Go, Max! You are already a role model to millions!

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  13. I love your analogy of "disability goggles" - that is so true. I just came back from Disney and most people there didn't seem to have those goggles on. There was always a different way for me to do the rides, swimming, etc. I bet Max would love it there!

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  14. Thank you for sharing this. I have a similar challenge with my Son, Matthew who has Autism. People automatically assume that he has some savant "super-power" and when they find out he doesdn't, they are disappointed. Then they completely miss out on how special he is in other ways.

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  15. Hello, I recently started a blog for helping kids and teens who are sick through music. I also have a youtube video for it. I have provided the links below.

    Keep Shining
    Keep Dreaming
    Keep Believing
    Don't Give Up
    ~~Kelsey~~

    The link to my video:
    http://www.youtube.com/watch?v=Rejw_aChABM&context=C30cdf93ADOEgsToPDskJ-vdDFufBcGSpb5F0CqW41

    My blog:
    http://shinedreambelieve.blogspot.com/

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  16. Such a shame that people are like that. I always want to make excuses for them (they've seen too many movie of the week specials, it was how they were raised) and smile stupidly. Or worse, I play right into whatever stereotype. Which is dumb, I don't know why I don't stand up for myself. I'm so glad there are parents like you around. I love my parents but they didn't give me very good models to go by on how to raise a special needs child.

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  17. The love you have for your son is so powerful in this post. I love that "mama bear" instinct to stick up for our children.

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  18. I've been writing on my blog about watching a documentary on inclusive education (Including Samuel) and along the way I realized something really important. I realized how much *I* have been cheated out of learning how to interact with people with disabilities and how it might have been less traumatic for me to learn of Malachi's brain injury if I had spent more than an hour with anyone with CP in my entire life. Those people who underestimate Max have been artificially deprived of any interactions with people with disabilities and it's for that reason that they make hurtful comments, not because they are stupid or thoughtless.

    It's a three-part series you can read here: http://www.outrageousfortune.net/search/label/Including%20Samuel

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  19. So funny to get your post in my mail this morning. I was just thinking the same thing. Just yesterday a friend told me that I am so modest about my son's accomplishments and that I should celebrate them more. (I casually mentioned that I was taking the morning off work because my son was in a school play. And I got, "he is?!!") I told her that nothing my son does surprises me. I've always known he can do these things. It's the rest of the world that doesn't think he can.

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  20. I love your blog! As a single father (help from my girlfriend)of a child with CP, I truly can understand everything you speak of. Its nice to know that people are sharing these moments that I experience. Thank you so much!

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  21. Mothers love is priceless and unconditional.She is there through thick and thin and sickness and in health.

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  22. I just wanted to say that I love reading your blog, and that this post in particular is great! I went to a talk recently of a college graduate (honors in English lit. from Brown U.) who didn't learn to read until he was 12 (he has severe adhd and dyslexia, I think). He too had a wonderful advocate in his mother (like you are for Max, and I hope to be for my daughter). This blog posting reminded me of how he talked that schools (and society) need to "invest in not just remediating weakness, but in scaling strength." I also saw how what you wrote spoke to some of the issues that came up in your earlier Sarah Palin post, and I hope that people who were critical of your response to what Sarah Palin said might better understand now why you were so upset about how she described her son.

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  23. Love, love, love this post! Thank you!
    ~ Keri

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  24. Really wonderful thoughts here. GOOOOOO our kids!

    Shasta, that series sounds awesome, I will check it out. Including Samuel is a wonderful documentary.

    OK, how's this for underestimating our kids: My mother-in-law sent Sabrina a Valentine's card. "To my wonderful, smart Sabrina," she wrote. Guess who she didn't send one to? MAX. I am guessing it's because she thought he wouldn't be able to read it. I am just. plain. disgusted.

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  25. Another great post Ellen.
    I agree with Kim about folks limited experience of disability and our need to educate and enlighten.
    We get this all the time with Ashley.
    More frightening when it comes from family though (eek)

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  26. Right on, mama bear. I'm with you 100% but it never hurts to be reminded and get a booster shot of good attitude. My son is also quite awesome. Rock on!

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  27. I agree with you that disabled people are disabled twice over when I make a joke people say amazed you're funny as if having Cerebral Palsy means I have no personality, hopes or dreams it really breaks my heart.

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  28. Max has mad skills.

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Thanks for sharing!