Saturday, May 1, 2010

My child has special needs but please don't treat him special


Today is Blogging Against Disablism Day, and people around the blogosphere are putting up posts. Disablism: discrimination against people who have a disability. The word conjures up people who do obvious jerk-like things to people with handicaps. But there's another form of disablism my son and I have experienced, a more subtle kind that may not seem like disablism at all: treating kids with special needs as if they are a whole other species of kid.

My son, Max, is 7 years old. He has cerebral palsy, which affects his ability to talk and use his hands. The cerebral palsy does not affect his sense of humor, his eagerness to play with other kids, his love for all things sweet, his curiosity about the world. He is a kid like any other kid.

The cerebral palsy does not make him some angel boy, either. He has meltdowns when you don't buy him a toy he wants, he's been known to hit you when he gets mad, he pulls his sister hair. In those ways, he is also a kid just like any other kid.

But that's not always people's perceptions. Some see him as a kid unlike any other kid.

I've had people ask if he likes to play with trucks or bubbles, as if he is playing impaired.

I've had mothers ask if he ever fights with his sister, as if he is incapable of sibling rivalry.

I've had mothers say things to their kids, in front of Max's face, along the lines of, "Honey, you can play with him, just pretend he's like a baby." As if Max couldn't hear.

Once, a stranger remarked, "Oh, that's so great he likes ice-cream!" as if his disabilities affect his potential for pleasure and joy.

I know that people don't mean to be mean-spirited when they say these things. Often, they are trying to be inclusive. But in the process of doing so, they end up making Max seem like an "other"--as in, a kid who is not just another kid. And they teach their own, typical children the same.

My son has special needs. But at heart, he is not special. He is a kid just like any other kid. Please treat him that way.

33 comments:

  1. I couldn't have said it better, Ellen!

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  2. Thank you for reminding us. What a wonderful post.

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  3. Not only does Zoey have CP but Down syndrome as well ... you could probably imagine some of the things that are said to me.I often think I might start penning a abook ... some are just THAT unbelieveable!

    Lately,the one I get most of the time,because people aren't exactly sure what to say as she if feverishly waving and trying to get their attention,is"She is so cute.Isn't she just beautiful?"Yes folks,I know she is but sometimes I want to say and have been known to say ..."Will you think she is still cute and beautiful 10 years from now.?Will you still stop and chat with us and rub her sweet hand?"I hope so because she is beautiful and a miracle and so very much more than what people see on the outside.

    Thank you for another great post.

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  4. I feel conflicted because I agree with the spirit of your post, but it would actually be useful if people would ask such clarifying questions when dealing with my son. He hates bubbles (he can't see them because of CVI and when they pop on his skin they hurt because of his peripheral neuropathy and sensory issues), he doesn't like trucks, he can't eat ice cream (sensory issues again and if that weren't enough he also on the ketogenic diet to control his intractable epilepsy), and in spite of being almost three years old he IS like a baby (developmentally 0-4 months old). If people assumed he were like a normal kid kis his age and left him to sit unsupported, he could (and has) seriously hurt himself. Even though I love him for the wonderful kid that he is, (maybe I am still in some stage of grief) it is still a little bit painful to hear people say things like "he's probably running all over the place" or "I bet he's a little Dennis the Menace when he's awake" (or when they give me bad looks in public because of his sensory overload) because they assume he is like a normal kid. I guess what I am saying is, the whole being treated "normal" can be a double edged sword. It's not always as great in practice as it is in theory.

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  5. I think this is a great post, which has a lot of vital info that you need when dealing with your child. I also think that Christina, the commenter above me, also has a great point about what her child needs. It's important to remember that everybody's experience is different, and I think that's something that "normal" people should be getting from BADD and all the posts I've read so far... People are individuals and they should be treated as such.

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  6. Very poignant- I appreciate your honesty on this subject.

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  7. I came over from Katy's and have loved this post and the one I read on her blog, too.

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  8. "My son has special needs. But at heart, he is not special. He is a kid just like any other kid. Please, treat him that way."

    This is EXACTLY what I've been trying to tell you since day 1! Well done!

    I'm glad you keep an eye out for BADD this year...

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  9. Very well said as always, Ellen. One of the most irksome disablism experiences we have had was when a woman looked at Monkey Boy, gave us the "pity look" and said, "Aww, poor little thing." Funny, he was running around and laughing when she said it. He certainly didn't look like someone to be pitied.

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  10. I totally agree with the heart of this message that kids should be viewed as kids first and their disabilities should come into the picture only as necessary so that accommodations can be made. As a teacher in a preschool classroom with inclusive peers, my children were delighted to learn all of the things they had in common and very quickly focused on those instead of the physical/communication differences.

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  11. Well said, Jo, and thanks for the nice words, everyone. Cristina, I totally get what you are saying, and how painful it must be to hear things like that. I do think accommodations need to be made for kids with special needs. Max cannot use any of the playgrounds in our area because they are not accessible to him, which frustrates me to no end.

    Heather, I've wondered the exact same thing about Max. I also wish people would comment on Max's smarts or his personality more often! It's all too easy to look at a kid who's handicapped and lavish praise on their cuteness, and not look beyond and see all the amazing other traits they possess.

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  12. Love this post you are a talented writer ellen

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  13. Thanks for writing me back, Ellen! We'll definitely keep you posted on which app we go with Proloquo2go or Grace. :)

    To your point, as a longtime fan of your blog, I know you definitely understand firsthand how hurtful an assumption someone makes about your child (or you, as a parent) can be--whether that assumption is that a girl should love pink, a boy should love blue, a kid can eat peanut m&ms, or that a disabled child isn't worthy of the same respect due to another child.

    All our kids are worthy of love and the respect. That's something I am glad BADD is around to tell people about! :) I look forward to participating next year. :)

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  14. I am very thankful for the excellent experience I had in my one year at a private elementary school where each week, a school that worked with children with severe physical disabilities came to our school for lunch (both were very small and located close to one another) and then hung out for our recess period. At first, all of the students were a little uncomfortable (as anyone would be when introduced to new people who looked and acted different from them) - both the students at my school and the students at the other school. But, we soon began to understand each other, and although some of the students could not speak at all, most were in wheel chairs or used walkers and some had issues controlling their arms and head - the instructors worked with us to teach us how to interact safely and healthily. And at the end of that year, we could all "play" together, eat together and respect one another. I am thankful now because I think it has made me aware of differences not being scary or pitiful, but just different. I wish that more kids could be exposed in a learning environment with truly supportive adults - like Ellen and some of the others who commented here. I think a lot of the reactions you describe are simply due to lack of exposure, experience and the resulting discomfort. Our society has a system that "hides" children with disabilities in special classes and special schools and when they are "mainstreamed" it often happens without any support for students on either side of the discussion.

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  15. Ellen, Love this!! I had to link this one to my blog. I hope that's okay.

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  16. I get what you're saying and I also get what Cristina is saying.

    People say things out of pure ignorance, sometimes. If they mean well, I don't mind. It beats being mean-spirited or calling names or shrinking away in horror or giving looks of disgust.

    Disability awareness is an ongoing educational process, I think. So long as people are trying to get smarter on the subject, and aren't being deliberately unkind, I will cut them some slack.

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  17. This struck a chord with me as my BADD post is on friends of mine who have a child with a disability, and how I feel I messed up when we met recently. I promise to do better next time.

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  18. I can relate to some extent. I parituclarly liked your comment about how your son isn't "jus tlike a baby". To me, it makes no sense to treat people with disabilities as though they are abled people of a different age. Even though I have multiple disabilities, I am still an adult. And on the ice cream thing, I once was eating ice cream, and some person approached me saying in a sing-song voice: "Do you like that ice cream?" Well, duh, if I didn't like it, I wouldn't be eating it.

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  19. wonderful post, i'm gonna share it on facebook!

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  20. Thank you for this wonderful post! It means so much to see parents of children with disabilities say such understanding things, parents who "get it."
    As someone with disabilities, on some days I feel sometimes like those pity comments are worse than the straight out mean comments...

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  21. Ellen,
    I think as we become more inclusive as a society and our children are integrated, this will happen less and less. My son, who is typical, (whatever that means), has been going to school integrated with peers with significant needs and he doesn't even blink when he sees others with visible disabilities at stores etc.

    We as a society are going to change because our children are changing. They will be our best teachers.

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  22. Very well put. All I want is for my daughter to be treated as typically as possible...my myself and by society. By the way, I adore your blog. You have a wonderful writing style and voice so much of my own life.

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  23. Brilliant post. Came here via Seahorse. Our children might have difficulties and obstacles but they are still children and need to be treated a such....they're lovable and naughty, funny and exasperating, sweet and not so sweet like all children and we love them to bits ;O)

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  24. I couldn't get my s**t together to participate in this. But what I was sort of planning on writing was along the lines of this post.

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  25. Exactly! I love this post. My son has Apraxia (neurological disorder of speech). While he cannot always communicate his thoughts clearly using words. He understands everything! There are so many times when others make comments that leave me thinking "what the &^*$*@#(@(" I wish people would think before they speak. Thanks for writing your blog. I really enjoy your posts!
    Katie
    www.warriortherapymom.blogspot.com

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  26. Thank you for such a wonderful post.

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  27. Thanks for your post Ellen. Perception is everything in terms of how people view disabilities. Acknowledging differences can be helpful, but looking beyond them is just as important, as is finding opportunities to challenge expectations.

    Our recent blog post looks at two individuals who are redefining what “disability” means: http://www.healthymagination.com/blog/a-fresh-take-on-disability-redefining-what-is-possible/

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  28. You're so right. And at least for us, its not just strangers who say things that are careless or insensitive. Even our family members say things that are upsetting and that tend to set our Lil Joe apart from the other kids.

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  29. I guess I'm gonna side with Cristina on this one. LOL
    Maybe it's because I am so new to this "club" - my baby is still under two. But I can totally see myself asking one of those dumb questions or making a silly remark. Not something so bad as "Just pretend he's a baby" but sure, I'd ask if he fights with his sister or likes a certain toy. Maybe because these matters depend on the personality more than ability.

    I guess it also depends on who is asking. Whether it's a stranger who you will never see again, or another mother you see sometimes at the park, or a good friend. It makes a difference if the person will be socializing with the child or he's just curious.

    I know a family with a DS girl. She is one year older than my (undiagnosed) girl and whenever I see them I always ask lots of questions... what she likes, what she is able to do...

    On the total flip side of your post, I dislike when people overestimate my daughter. Saying things like "She is only a couple of months behind." Or not believing me that she will need to go to a specialized school. Or comparing her to their own typically developing children who all learned to talk late, telling me that I have nothing to worry about. The difference is that your kid DID have words- "buh" for ball, or bike, or bottle, or all three IS considered a word. My toddler doesn't even understand that objects have names!

    Luckily, all our family members and friends LOVE my daughter like they do my other children and would never exclude her, treat her in a lesser way or say odd things to her.

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  30. Hi Ellen,

    I have the same problem sometimes. There's a big misconception in this world about people in wheelchairs and people with disabilities, that they're all deaf, blind or dumb in some way. I get ones that say "How are Yooouuu little girl?" (I'm 26).
    or, "She has a nice shirt" (like I can't hear). I can relate very well to that unfortunately.

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Thanks for sharing!



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