Friday, March 25, 2011

Cerebral palsy is not my child: In honor of Cerebral Palsy Awareness Day 2011


My child with cerebral palsy is not the same as another child with cerebral palsy; the condition isn't one size fits all. There are various types. Even within the same type, it affects every kid (and adult) differently.

My child with cerebral palsy is not defined by his disability. He is a cheerful, outgoing, spaghetti-eating, purple-loving kid who happens to have CP. He is not A Kid With CP. Please do not refer to him that way (although he'd be psyched if you called him Purple Max).

My child with cerebral palsy is not someone to be pitied. That should be reserved for children who truly exist in sad circumstances.

My child with cerebral palsy is not an angel just because he has a disability. He can be naughty and bratty and everything-y any typical kid can be. Just ask his sister.

My child with cerebral palsy is not someone I go the extra mile for because I am an angel. He is my child. You do what you can do to help your children succeed in life.

My child with cerebral palsy is not hard of hearing. When you talk about him as if he is not there, hello, he can hear you.

My child with cerebral palsy is not meant to be ignored at the playground, at the gym, or anywhere else physicality rules. He may move more slowly than other kids but he is just as gung-ho to have fun. Include him.

My child with cerebral palsy is not a "cutie pie." He is not "so sweet." He is not necessarily any of those belittling words well-meaning people use to describe children with special needs. He is "smart." He is "funny." He is any personality trait any kid can have.

My child with cerebral palsy is not someone to be openly gawked at. So what if he drools; your child eats his boogers. Kids have their quirks. (You may, however feel free to gawk at his gorgeous mom.)

My child with cerebral palsy does not have something catchy, although from the way some parents hover nervously when their child is around him, you might very well think he does.

My child with cerebral palsy is not someone or something I "have to live with." He brings me joy that may not be possible to understand...unless you have a child with cerebral palsy.

38 comments:

  1. Fabulous post Ellen, hear hear to that. I cannot stand it when people talk to Oatie in front of him like he's invisible. Or when people think he's thick... Oatie has a fabulous sense of humour which I adore... I wonder if he'll be a stand up comic as he has us in stitches. Max is gorgeous x

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  2. Fantastic! Enjoy celebrating your very handsome and entertaining son! I love getting to know your brill family through your writing. Xxx

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  3. Oh Ellen, every day you post these things I just don't know how you do it . . . I'm sure I could never handle what you do . . . I bet that is really hard to deal with, isn't it? KIDDING!! You are a loving mom, plain and simple, to a lovely child, just as he is. Thanks for sharing. It kinda makes me wanna barf that I said that . . . but I still mean it!!

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  4. Stephanie PinksterMarch 26, 2011 at 7:06 AM

    ELLEN, YOU ROCK!!! LoVe your writing :-). Have a fantastic CP awareness day.......isnt that every day for some of us?!?! :-)

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  5. This is perfect! You described exactly how I feel about my two boys with autism.

    Thank you!

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  6. Absolutely perfect post!

    My next door neighbor and friend has cerebral palsy. She had to first fight the government to be able to go for her driver's license, and then once she was given access, she had to fight for her family's support to do it. She DID get her driver's license.

    Last year, at 45 years of age, I was so inspired by her, that I finally went for it. I finally went for my driver's license.

    I guess what I'm trying to say is that all her life, my friend, my neighbor has had to fight to break those assumptions about what she can and cannot do. And often these can be the very same things I take for granted.

    Awareness is so very much needed! Great post!

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  7. Well said. You are an excellent mom & advocate for "Purple Max".

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  8. Your child is a much loved child.

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  9. Ditto to everything! Love this post.

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  10. You have made it very clear...it is ok that Momma get's mad when people say "But he looks normal? and so cute?!?!" Umm, Yes he IS normal and he is so cute! Errr
    Purple Max you and your momma have help me threw the first 2 months of our sons CP diagnosis. I am so greatfull for both of you!

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  11. So beautifully said.
    Kristen

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  12. Thank you. My son is only 4 months old (today!!!), so this is all new territory for me. You will never know what your blogspot has meant to me this past month.

    This is just another one of your amazing posts. You are doing what God hoped you would do for others when He blessed you with Max.

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  13. happy cp awareness day I have cp and I get that hi sweaty pie how is she when I am right there people talk to assistant not me

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  14. Happy Cerebral Palsy Awareness Day.

    What a great post. I could say much of the same about my child with epilepsy and Autism. You are a wonderful voice for not just CP awareness but disability awareness in general.

    Keep going.

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  15. YAY!!!!!!!! You said it!!!!!!!!!

    (Max IS cute as all get-out, though--you can't deny it! He is one gorgeous kid! So's his sister!)

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  16. This post really makes me want to do the illustrations to go with a kids book called Purple Max. I now imagine Max as a mix between Harold and the Purple Crayon, Max from Where the Wild Things Are (without all the bratty qualities), and all the sweetness of Christopher Robin.

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  17. hurrah for just the best post ever! i loved every single word xxx

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  18. That is a great post. However, I still want to pinch those cheeks every time I see the picture.

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  19. WELL SAID ELLEN
    I like to think of Ashley's disability as one facet of him. Just one. His diagnosis doesn't define the him.

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  20. Just found about your Blog, from a magazine. I look forward to reading and sharing.

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  21. So glad this post was shared on Twitter by ChildOrganics!

    My son has a genetic metabolic disorder. I completely feel you on the fact that I am not some kind of saint for taking care of my kid. Every family, every child has their quirks & needs. We just happen to have more doctor appointments than playdates.

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  22. I just found this post via Twitter and I wanted to say YES YES YES. This is an amazing post. Thank you for writing it!

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  23. I may not get it precisely, however, since my 9 yo daughter has Down syndrome, I think I understand what joy the world cannot comprehend is all about. Love your blog, sister!

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  24. My daughter is hard-of-hearing, though not profoundly. So, in a different arena - I understand. I appreciate your words. :)

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  25. So true! And what a great kids' story Purple Max would be.

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  26. well written, awesome post! thanks.
    Specialneedsmom.com

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  27. Thank you for summing CP up so well.
    Your poem is beautiful. I work as an Integration Aids in a public school with children with a variety of Developmental Disabilities.
    I hope that you don't mind that I have adapted the wording to include all CP children, with your site at the bottom, so I can distribute it to my collegues, some of whom are very uncomfortable around children with any kind of disability!
    Thank you once again for a beautiful poem! Terry

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  28. Hello I am,new to this blog. My son also has cp, my question is when is cp awareness??? I didnt know they had one??

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    1. Its in March. Like your son, my daughter Abby also has CP. I hope I answered your question.

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  29. My 3 yr old was born with a stroke and has hemiplegia and epilepsy. His blog is http://blessingsofbenaiah.blogspot.com/

    May is pediatric stroke awareness month.

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  30. Thank you for this post. Like Max, my daughter was also born with spastic CP. I'm with you on the fact there are various kinds. However people are free to call Amelia a cutie pie I can never get enough of that. Its hard enough to talk to parents to children with extra needs, lets NOT make it more challenging.

    Oh and Terry, its NOT a poem... its a post. Please learn the difference.

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Thanks for sharing!



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