Tuesday, September 4, 2012

Why you shouldn't pity my child with cerebral palsy: World Cerebral Palsy Day 2012


Today is World Cerebral Palsy Day. The organizers asked people to submit a brief video or message with an idea for bettering the world for people with CP. One of my most desperate wishes for Max is for people to quit pitying him or being wary of him and just see him as a kid, period. Given that there's no Men In Black type wand I can wave over people's heads, I just have my words. So my contribution today is to share some of what I've learned about cerebral palsy over the years. I hope it helps people better understand what CP is and not feel bad for Max and other kids with cerebral palsy who kick butt.

5 THINGS CEREBRAL PALSY ISN'T

Cerebral palsy isn't a disease. It's a disorder. And it sure isn't catchy, although from the way people sometimes stare at my son, you'd think it is. People sometimes fear what's different, it's true—but Max is a kid, not an alien. He is a rather awesome kid. I'm often asked what, exactly, adults or kids should say to a kid with special needs. Here's what you can say: "Hi."

Cerebral palsy isn't a muscle or nerve problem. It's caused by damage to parts of the brain that control muscle movement and coordination—"cerebral" means having to do with the brain, "palsy" means weakness (there's a good history of CP here). Max's brain damage occurred at his birth, when he had a stroke. Until I had Max, I wasn't aware that your brain controls every muscle in your body (apologies, high school anatomy teacher). But it does, even the ones in your tongue, which is why Max has issues with talking, eating and drinking, along with challenges using his hands, arms and legs. Thing is, Max hasn't gotten the memo that he has physical "issues"—this is the body he was born with, and he uses it the best he can, same as any of us.

Cerebral palsy isn't necessarily a cognitive issue. Some children with CP have intellectual disability; some do not. CP affects everyone in different ways, depending on which part of the brain is damaged. Max has some cognitive impairment. So what if he isn't at the intellectual "level" of other 9-year-olds; he is plenty bright, plenty aware, plenty wily (he is a master at tormenting his little sister). Max learns in his own way, on his own timeline. This year, he started to read, and I couldn't have been more proud. Max does things when he is ready; there is no race to a finish line.

Cerebral palsy isn't progressive. Although the brain damage doesn't get worse, issues with muscles can improve or worsen over time or remain the same. Last year tendons in Max's right foot tightened up and made it turn inward, and he needed a series of casts to help straighten it. It gave us a scare but the casts did the job, and life went on. We're lucky to be living in a time when non-surgical options like this exist, although if Max does someday need surgery to ease tightness (aka spasticity), we'll have that option, too.

Cerebral palsy isn't curable. Not yet, though there's been recent promising research about interventions at birth that could prevent it. But CP is manageable; physical therapy, occupational therapy, speech therapy, and even music therapy have helped Max better function, and continue to maximize his potential. The CP has had no affect on his determination, which is not the least bit impaired. If more people had determination like Max's, a whole lot more would get done in this world.

...AND 4 THINGS CEREBRAL PALSY IS

Cerebral palsy is an umbrella term for a group of disorders. There are three basic kinds: With spastic cerebral palsy (the most common), muscles are often stiff. Max has mild four-quad spastic cerebral palsy, which means all four of his limbs are affected in some way. Those with athetoid cerebral palsy often have slow and writhing or fast and jerky hand, feet, arm and leg movements, and may grimace often. People with ataxic cerebral palsy often have poor coordination and may walk unsteadily and have trouble controlling their arms or hands when reaching for something. Some people have a mixed form of CP.

Cerebral palsy is the most common childhood motor disorder. About 764,000 kids and adults in the U.S. have CP, according to United Cerebral Palsy, and 8000 babies and infants are diagnosed with it each year. About 17,000,000 people worldwide have CP, according to Reaching for the Stars. In case you're wondering, it is less common than autism—an estimated 1 in 268 kids in the U.S. has cerebral palsy, while 1 in 88 kids has an autism.

Cerebral palsy is a disorder that can be detected early on. While signs of CP vary, there are main ones in babies and young children. With those under 6 months old, a lack of head control, stiffness or floppiness, overextending the back and crossed legs are the major signs, per the Centers for Disease Control and Prevention (CDC). Max had stiffness as a baby and still does; it can make movements challenging at times, but it does not hurt him. Signs in babies older than six months including not rolling over, bringing hands together or to the mouth, and reaching with just one hand while keeping the other fisted. In babies older than 10 months old, signs include crawling in a lopsided way and not being able to crawl on all fours. The earlier the diagnosis, the sooner a child can get Early Intervention services.

Cerebral palsy is what my son has, but it does not have himMax may have cerebral palsy, but he is not defined by it. He doesn't sit around feeling sorry for himself. He just knows to enjoy the life God gave him and that we, as his parents, have built for him. Max's love for his family, learning, riding his bike, watching movies, and downing copious amounts of chocolate ice-cream is as strong as any child's. My love for him is as strong a love as any mother feels for any child.

30 comments:

  1. Hi Ellen. Enjoyed your post. My son has hemiparesis (left side), which falls under the umbrella of cerebral palsy. He too had a stroke at birth (or during my third trimester; we'll never actually know when it occurred). He wasn't diagnosed until he was 13 months as we just assumed he was taking his own sweet time hitting his milestones. Thanks to Early Intervention and ongoing therapy ever since, my guy also kicks butt. I enjoy reading your posts. Thanks so much for advocating for all kids with CP. This mom very much appreciates all you do for your son and his fellow kick-butt buddies.

    Julie Z. Rosenberg
    http://parkslope.patch.com/columns/special-ed-parenting

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  2. I really appreciated this post, and was glad to learn some things. I will teach my children the power of being able to say "Hi."

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  3. This is an EXCELLENT post that I will be sharing far and wide. Thank you Ellen!

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  4. Well stated. The brain injuries and disorders are so very difficult for people to understand. Thanks for a great post. I learned something about CP - and you inspired me.

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  5. A great post, Ellen. I don't know where you live, but the Bowen Technique - and Facia Bowen in particular - can be very helpful for CP sufferers in many ways, depending on each individual's condition. It may be something for you to look into, if there is a practitioner near to you. I am based in London, but Bowen is becoming better known in the US as well. All good wishes.

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    1. People with CP do NOT "suffer". Please dont make that mistake again.

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  6. Love this post, Ellen! I wish I could print this on business cards and hand it out to all of those who gape at Matt when we go out. Especially since we got our wheelchair last week. Keep up the awesome work!

    Also, what are you guys slipping in Max's ice cream? He's looking so much bigger and grown up!

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  7. Hi
    I am a 13 year old with spastic diplegia CP. I can walk with leg braces and am very nearsighted and crosseyed and have had 3 eye surgeries. I am in a public middle school in mainstreamed classes.(I start 8th grade tomorrow) I get adaptive PE 2x a week and PT in school 4x a week for 30 minutes each session.plus i go to the resource room every day for 45 minutes. Outside of school I have daily vision therapy for 1 hour daily and PT 3x a week for 1 hour each.

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  8. Thanks, all! Madison, you should meet Jack, another awesome 13-year-old who has CP. Here's his blog: http://www.cpsowhat.blogspot.com/

    Catherine, I will check into the Bowen Technique, hadn't heard of it!

    Brandi, I think chocolate ice-cream has magic growing powers. Either that or he's just getting to be a big kid. He's closing in on 10!

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  9. I always look forward to your blog because you always hit a home run with what you say. Thank you for being such an awesome advocate for CP!

    I find comfort that other mommies struggle with the same thing i do daily. Though thankful that due to my daughter's limited vision she doesnt see people staring so therefore she doesnt care and just continues to bring joy to those around her.

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  10. Thank you for tor telling people what CP is and isn't you are making the world better for me and Max :)

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  11. Ellen-
    first off great post and well this is why i am commenting
    There was something in my newspaper this morning about stroke prevention but what ticked me off was how it said strokes only happen to older people and that all people who have a stroke die from it. Now I know these facts are not true and am compelling a emazil to the newspaper and i was wonder if I could include the name of your blog in the email.
    From,
    Kathryn

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  12. Thankyou Ellen for sharing your insight into your personal parenting exprience eith CP, thanks Max for the cool pic up the top! I still find it amazing that every single thing is controlled by a muscle in the body!

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  13. Quite fitting to have it in the middle of the paralympics!

    This is a bit off topic but I wondered if you could help.
    This is off topic, but can you help. My 7 year old neighbour asked me "Why are all the children on Mr Tumble sick?"

    (Background knowledge here, Mr Tumble is a clown on "Something Special" a kids TV show were kids with intellectual disabilities help a silly clown to do things and learn signs.)
    I wasn't really sure what to say but said "They aren't sick, some children take longer to learn things, some find it hard to talk,or can't hear, sometimes they talk with their hands." Then we talked about the signs we knew and practised them.

    Any other ideas?

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  14. Glad I can finally read this. It was worth the wait.

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  15. I very much enjoyed this post today and for those comments made by others. I want to bring emphasis to the list of doctor, therapist, and specialist appointments that a child with disabilities needs and the horrific cost of these appointments. My son and his wife both work, have good paying jobs, and are nearly bankrupt for the costs of my granddaughter. Now flex spending accounts are being challenged - how can working people get financial help?

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  16. PJ, agree, there are many financial challenges of raising kids with CP that put hardships on us parents. But that is a separate issue from the one addressed here, of not pitying kids with CP. I don't have answers about financial help, but I do know that Shriners offers free care to kids with disabilities and that sometimes therapists will work with you on costs if you purchase sessions in bulk. Also, with insurance companies, I've found the squeaky wheel gets oiled; I have fought to have them cover more therapies for my son, and have won.

    Kathryn, that is just plain wrong and yes, let them know about pediatric stroke!

    Claire, I think the answer you gave is perfect. I've sometimes told kids that people's brains work in different ways, and Max's has its own way of working. I also like to get into a discussion of what's more ALIKE than different—for example, "Maybe that child doesn't talk like you do, but I'll be he loves ice-cream like you do!" or some such.

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  17. Thank you so much for the "He has CP, but it doesn't have him." At my knitting group one night a young woman who was studying to be a social worker said to me, "Mary is Down's, right?" I bristled, then calmly told her that Mary has Down's Syndrome, what she is is a 50 year old woman. I really offended her, but I felt that if she was going to work as a Social Worker it wasn't too early for her to learn the proper terminology. It took her a few years to forgive me.

    I think the worst thing that anyone ever said to me was my sister's Christian father-in-law said he didn't know why God would do that to Mary; it is just an absolutely wasted life. I never wanted Mary to be around him again.
    I worked very hard to forgive him for the ignorance.

    Lynda

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  18. Thanks Ellen I am sending the email when i have chance.I am starting high school tommorow so craziness. Tell Max and Sabrina to have a good first day at school if they have not already.What grade is Sabrina in?
    -Kathryn

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  19. nice post perhaps u can share the video i made for world CP day http://www.youtube.com/watch?v=dsKBJEagCy8&feature=plcp

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  20. HI ELLEN.. READ UR BLOG ABOUT CEREBRAL PALSY ON FACEBOOK BY CHANCE. AND IT JUST INSTIGATED ME TO SHARE SOMETHING WITH YOU. I AM A PRACTICING PHYSIO IN PUNJAB, INDIA AND HAVE BEEN TREATING PATIENTS WITH CEREBRAL PALSY SINCE LAST MANY YEARS. IT GAVE ME IMMENSE HAPPINESS TO KNOW THAT THERE ARE PARENTS LIKE YOU WHO ARE ACTUALLY AWARE OF WHAT CEREBRAL PALSY IS AND THEY DO GO FOR QUALITY TREATMENT WITH GOOD RESULTS AS EVIDENT IN PICS OF MAX. HATS OFF TO U FOR THAT!! :)

    WE (ME AND MY PHYSIO HUBBY) HAVE BEEN TRYING ALOT TO CREATE AWARENESS ABOUT THIS CONDITION. BY GOD'S GRACE WE ARE SUCCESSFUL TO SOME EXTENT, AS THERE ARE PATIENTS APPROACHING US FROM COUNTRIES LIKE ENGLAND, AMERICA, UAE, ETC. RECENTLY ONE OF OUR PATIENTS AGED 20 YEARS, "TOTALLY DISAPPOINTED" {IN THEIR OWN WORDS} FROM NEW ZEALAND HAS RECOVERED FROM SPASTIC CEREBRAL PALSY WITH IN TIME SPAN OF 6 MONTHS. I MUST SAY, IF STRATEGICALLY PLANNED TREATMENT IS GIVEN, "CEREBRAL PALSY IS CURABLE."
    NOW WITH HELP OF ACKNOWLEDGED PERSONS LIKE YOU, I HONESTLY WISH TO CREATE MORE AND MORE AWARENESS ABOUT ITS CURABILITY..AS I AM NOT ABLE TO BEFRIEND U ON FACEBOOK, MEET ME ON FACEBOOK AT THIS LINK https://www.facebook.com/shiveta.msaini

    REGARDS

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    1. Soni first thing dont shout. And NO one "recovers" from CP- its a LIFELONG brain disorder.

      It is NOT curable. I dont believe any of what you said because people who say "CP is curable" are either idiots or downright liars. You should be ashamed of yourself for promoting the FALSE message "CP is curable and people can recover from it".

      Please go and read up on CP.

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  21. Thank you for.sharing this personal journey you, your son and. Your family are on. I had a younger brother, Ronny who had CP and was also severally mentally handicapped as well. He died when he was 7. It was very challenging for my parents, especially my Mom. It affected the rest of her life and was extremely difficult for herto get over. What you have shared is very helpful.

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    1. I had a younger brother, Ronny who had CP and was also "severally mentally handicapped" as well. Cranman FYI we do NOT use OLD fashioned words like "severely mentally handicapped" . "SMH is actually one of the most antisocial words out there. And Its 2014, the times have changed, get with them! Really you should know better, shame on you!! Describing your brother as SMH is NO better then using the R-word. You may as well call him that!

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  22. my girl have it and it so hard to take care of her. Doctor took all most four year to figure out what she had. She just start to stand and sit by her self

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  23. even i m a mother of a cp child n m very proud to say it. my son is now 7 yrs n he likes music a lot. infact we have a separate tv just for him. whenever we go out people just stare at him n i have the same feeling like urs that hey come-on he is not an alien. i have three kids n he is the eldest 1. both his bro n sis love him a lot n very possessive about him.

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  24. Enjoyed your post,,,my child is 8 1/2 he has cp also he is not walking yet but we continue to keep faith in god....blessings to you n yours also!!!

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  25. Thank you for this story, it gives me so much hope! My daughter is 4 months old and has Spastic CP. We worry about the future a lot but I know things will be ok and we couldn't love her more!

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  26. Thanks for being so positive Ellen.

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  27. I agree with this- some children with CP have intellectual disability; some do not. My child with CP only has gross motor delays. Like Max, Amelia has extremely mild spastic CP although she has spastic one limb cp.

    You may or may not know about this type of cp as its not common. My girl is unique in that way I guess. Amelia doesnt sit around pitying herself either, she doesnt know she has CP yet.

    As soon as I found out at 3 months, Amelia started physical therapy. She is now 18 months old and doing well.

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Thanks for sharing!



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