Monday, March 25, 2013

30 things people don't get about kids and adults with cerebral palsy (but should)


What does it really mean to have cerebral palsy? Until I had a child with CP, I had no clue that it affects every person differently. As with any human, kids and adults with CP are as unique as their thumbprints.

In honor of National Cerebral Palsy Awareness Day (today!), I asked parents of kids with CP and adults who have it to share what they wish people knew about the condition. This is what they had to say.

One thing I really wish people got about cerebral palsy is...

"There are different types, and they don't all affect people the way you think they do (i.e., when I was a kid, I though CP was always spastic quad in a wheelchair)."—Janet C.

"My son's motor and speech impairments don't mean he 'can't'—he can get the same end result but in a different way."—Theresa S.

"Our kiddos aren't so fragile, don't be afraid to talk to them or treat them like a 'normal' healthy kid. They have more love and wisdom than you could ever imagine!"—Melly B.

"Just because I use a wheelchair doesn't mean I also have an intellectual disability. People look at me and assume I can't function at all, which isn't the case."—Jane H.

"It's OK to ask questions. Please, ask. Don't assume."—Megan C.

"It's not contagious!"—Adrianne B.

"Cerebral palsy is not a disease!"—Keri F.

"It is not a tragedy."—Jessica M.

"One thing I really wish doctors got about cerebral palsy is how capable these special kiddos really are! Do not tell me how my child may never walk or talk because I'm just going to prove you wrong."—Melly B.

"If you know one person with CP, you know one person with CP. It affects everyone differently."—Annette B

"CP presents differently in people who have it. 'Well, she doesn't LOOK like she has cerebral palsy!' should be struck out of everyone's vocabulary because CP doesn't have a specific look.... And contrary to TV commercials for lawyers, birth injuries aren't always someone's fault. So no, I am not suing the doctor who delivered her."—Theresia C.

"Although we may do things differently, we are human beings and should be treated as such!"—Tyler M.

"My daughter has CP, your son has a peanut allergy, his daughter wears glasses, and her son wets his bed. We all deal with challenges, yet we all love our children."—Malky H.

"Other kids can do the same activities with our kids, you just have to adapt them. They want to have friends, too."—Tammie M.P.

"I tell people my son is Superman, he just spells it different: cerebral palsy."—Jennifer L.

"We are more alike than different. We have feelings, hopes and goals. Assume we understand and respect us."—Veronica N.

"'Even though it prevents me from talking, it doesn't mean that I don't love to be talked to!' I know this is what my son would want to say."—Kim M.

"We don't need your apology and sympathy. We love our Matthew just the way he is. We will tell people when we get the infamous "awww" or 'I'm sorry' that Matt is exactly whom the Lord intended him to be. He is wonderfully and fearfully made, so look out!"—Jann F.

"If you know I have CP, you know but one of thousands of facts about me.... Although I have to plan around my CP every minute of the day, it does not consume my identity. I care about things outside of disability world. I'm planning to enter law school next year, and people always assume I'm going to work in disability rights. I get tired of the 'Actually, I'm interested in criminal defense' speech."—Danielle O.

"Just because my son can't walk, crawl or talk at the moment, he's not stupid! He understands you!"—Jenny V.

"It's part of who I am, not just a diagnosis. It wouldn't go away or go dormant when you want it to."—Meg M.

"One day she will not just 'snap' out of it or grow out of it. So stop asking me when or if she will walk!"—Trisha I.

"CP is not a choice. My child has a fortunately mild case, but it's real, and he's not pretending or being lazy about the challenges he faces for fine-motor conrolas well as things like running. He can't choose to be more graceful or coordinated, and he's doing the best he can."—Laura R.

"It's very hard because of many things. One, you can't control your muscles very well. Another is the drooling and trying to control that. Third is that fine-motor skills are a pain. iPad is a great tool to use with anybody who has CP. I know this because I have CP."—Jon S.

"Children with CP are made in God's image, and what makes society think God does not have CP? I'm the mother of a child with CP, and he has given me the opportunity to view the world in a whole new way."—Duana B.

"It's not just my legs. CP affects every part of my body and causes chronic fatigue and pain. Please be patient, for I have to spend my energy wisely."—Cara S.

"People with CP are actually way braver and way stronger than typical people because they live in bodies that are harder to manage."—Sarah G.

"My daughter is NOT defined by her body that doesn't move like her typically developing peers, but by her brilliant mind that communicates through her eyes and vocalizations."—Paige S.

"A little bit of effort from friends and strangers to include and treat our child with CP just as a regular kid goes a long way. As parents of kids with CP, we are hyperaware that seemingly minor gestures actually hold a great deal of meaning."—Jen S.

"CP is what he has, it's not who he is."—Tana S.

31 comments:

  1. Hi -- Valuable perspectives.

    But I take issue with this comment:

    "Just because I use a wheelchair doesn't mean I also have an intellectual disability. People look at me and assume I can't function at all, which isn't the case."—Jane H.

    People with intellectual disability aren't incapable of functioning. No, no one should make an assumption of any kind based on the use of a wheelchair. But too often people with physical disabilities continue to stigmatize people with intellectual disabilities, and try to disassociate from them. There are people with CP who have both and they are no less valuable. No one wants to be discriminated against because they have a physical OR intellectual disability.

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    1. I agree...that one stung a little bit because my son does have both physical and intellectual disabilities. He CAN function, and the way he functions is a miracle and a joy to me and to everyone he meets. The way he lives and enjoys life is far more valuable than some people give him credit for. I don't mean to be harsh or lash out at that person, but the comment was every bit as discriminatory as people judging her for being in a wheelchair. We are all trying to battle the stigmas associated with Cerebral Palsy, so please don't perpetuate the image of people with intellectual disabilities being "vegetables".

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    2. I felt the same way when I saw that comment. I hope that they didn't mean that the way it came out. My Gregory has both physical and intellectual disabilities. He is eager to learn and learns rather quickly. As for the rest of the comments, I think my favorite was "If you know one person with CP, you know one person with CP" I know around twenty or more that go to school with my son. Not one is the same as another and all have different personalities.

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    3. Definitely didn't mean for my comment to be interpreted like that. My apologies. I didn't intend to say/imply that people with intellectual disabilities are incapable of functioning. I'll attempt to clarify here what I meant - I think that whether someone has an intellectual disability, a physical disability, or both, it doesn't impact their ability to live a full life. *I* don't believe that people with ID's are incapable of functioning, but I think *others* make a false connection between those with ID's, those with physical disabilities, and overall ability to function. I feel like a lot of people have assumed, upon seeing me, that I'm less capable than other people. I think that when people see me, their thought process is as follows.

      Person in wheelchair = incapable
      Person in wheelchair must also have ID
      ID = incapable
      This person = VERY incapable

      That's not how *I* view people with ID's, physical disabilities, or any intersection thereof, but I feel like that's how society, generally speaking, views me when they see me in passing. I can't speak to every disabled person's experience and I certainly don't agree with people who view individuals with disabilities as any less capable than their able-bodied/neurotypical/ect. peers.

      I didn't mean for my comment to come off as ableist or as speaking for all persons with disabilities. I was simply stating my own perception of how society sees me and DEFINITELY should have done so in a clearer manner. I hate to know that I've perpetuated ableism by not being clear enough in my wording.

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    4. I totally get this concern. I have cp and am of normal intelligence. I also worked with kids who have ID. At times, people would assume I was one of them and that didn't bother me in the least. But when people in other situations make the assumption that I have an ID it pisses me off no end? Why? Obviously its not because I think having an ID is negative. Its because people who assume that are overlooking a big part of me. Just me. Its about someone trying to limit my abilities. Whatever our abilities are, they are part of who we are. Having that dismissed feels like crap.... as it does for people with ID when their abilities are dismissed.
      Also for those of us who have to support ourselves, its really hard to survive when people assume.... it cuts us out of educational and professional opportunities. Yet we are expected by some to provide for ourselves. Its a bit of a no win situation.
      All this to say please don't feel stung by the comment. There is a whole lotta stuff
      going on hat has little to do with people who have ID.

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    5. I believe Jane is referring to the fact that her strength is her intellectual ability and it is not being recognized. In a similar sense a person who can walk and use his/her arms and hands would be frustrated with others who would put him/her into a wheelchair. Jane is not discriminating against anyone, she is just advocating her right to have her intellectual abilities recognized. I have considered this scenario for many years and this is my conclusion. Donya

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  2. Amen to everything listed above I particularly love "Although we may do things differently, we are human beings and should be treated as such!"—Tyler M.

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  3. Thank you for this post and the 2 top comments left after it. I had tears in my eyes when I read this because my son has physical and intellectual disabilities and some of the peoples comments made me feel like he is 'less' because he doesn't understand things other people do. The comment "he is not stupid! He understands" hurt. My son may not understand but he is not stupid. I fully appreciate everyones thoughts and am grateful for the awareness that posts such as this promote but I do often struggle when people imply the feeling "it's ok because I/my child understands everything". Mine doesn't and he is wonderful :)

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    1. My son also has physical and intellectual disabilities. Mine doesn't understand either and I agree with you that my son is wonderful too. Thanks for adding this. I feel he understands more than we know but I also feel that he has more of a 6th sense so to speak and can sense peoples moods and feelings more. Our children are wonderful!

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    2. Hi anon. I've clarified my comment. I worded it incorrectly/irresponsibly.

      http://www.lovethatmax.com/2013/03/what-people-dont-get-about-kids-and.html?showComment=1364432270329#c7300003815491765460

      I'm hoping that this clarification helps, at least a little. I'm still learning how to TRULY convey my opinions and sincerely apologize for any hurt or offense that was caused.

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    3. Thank you for your apology Jane H. I really appreciate your comments and thoughtfulness. No hard feelings :) all the best to you.

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  4. Thanks Ellen for sharing so many views from parents and people who happen to have CP in their lives. I often think if it weren't for CP I would be we have discovered such an amazing network of blogs worldwide xx

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  5. I grew up reading Marie Killilea's wonderful books about her daughter Karen and their amazing family. I believed persons with CP were invincible because Karen was.

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  6. http://azisamazing.blogspot.com/2013/03/what-would-you-say-to-new-parent-in.html here is my post

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  7. Thanks for this post. It inspired me to write a post about my brother. I asked my family members what they wish people knew about him. You can read it here.

    http://www.chaosandfamilyblog.blogspot.com/2013/03/national-cerebral-palsy-awareness-day.html

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  8. Hi, I have never written on here before so let me gice a fast history. I have a 6 year old that has CP and Autism. The things people whisper when they think I cant hear them sends me thru the roof. Most times i act as if i didnt hear them but if my son hrears them, I quietly and with a smile on my face so my son thinks Im being nice, walk right up to them ang give them what they have commimg to them. No one has the right to make him feel less then the amazing person then he is. No one has the right to hurt him. Some say Im wrong but if I dont stand up for him and point out to these people that they are hurting a child, who will?

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  9. I'm autistic and I don't want the pity stare. I just want to be recognized as a musician and a person. Some people don't understand that. My band director is extremely helpful. As well as giving OTs (mine was AEWSOME), speech therapists (I did this in school), and teachers, thank band directors. They work very hard on a tight budget. Donate to some band programs.

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  10. I am a home health nurse with a patient with CP. What I would like to say is she is an awesome lady. She has gone against all odds and completed collage and now has a masters degree. She has told me about many changes for the better after having "brain burns". She has had documented changes in her speech, ability to use her left arm, and identify detail in pictures. I would like to know if anyone else has had this happen to them.

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  11. Hello!

    I've been doing research on CP recently because I've found myself in a unique situation. I have grown up around kids with physical disabilities all of my life and have been taught to never treat them differently, so I never did. People are people. However, I have a new classmate with CP and she out-right expects to be treated differently. I understand that she has a disability, but I see people all around me trying so hard to do things and if they struggle, of course I want to help, but her expecting me to help and be willing to drop everything I am doing at the time to grab her purse/etc. just seems like laziness to me. She seems to have been coddled her entire life because of her disability and doesn't even know manners. She demands, and I don't know how to say no because of the disability-stigma. I feel like a terrible person for thinking she is lazy and just isn't trying hard enough (which is phrased in a terribly callous way), but am I the only person to have felt this way in a certain situation before?

    I basically need confirmation that I am either normal or a humungous asshole.

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    1. Yes PWD are people too! I know a lady who is physically challenged and very demanding. She is difficult to be around because of this. As I have gotten to know her better I understand her attitude a bit more but that doesn't change the fact that she needs to be nicer and not so demanding. Your perception is that she has been coddled but what if it was the opposite and she has had to fight and demand to get what she needs? Just a thought, you might be right. Whatever the reason she needs to change her attitude. If you do not wish to offend her then this is going to be tricky. You have to set your boundries and be firm about them (make her wait until you can get her purse or whatever) and you also have to be very kind so she can figure out you've set boundries not that you are just being mean. This will be a balancing act but if she "gets it" you will have given her a wonderful gift of being more socially acceptable. Good Luck! Donya

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  12. Something missing: As a person with cerebral palsy who is married to a man with cerebral palsy, one of our frustrations we face is: children with CP grow up and still have CP! It doesn't go away! It's really hard after age 24-26, when funding seems to go away, UCP doesn't seem to realize we could use any services (other than asking us to donate), and that after age 26, we still have CP, still need to be around others just dumped into main society, sort of left alone. It's also very hard to get doctors to understand our health issues, as that most of the focus seems to be on educating pediatric doctors about CP, but once over age, most doctors fail to know much about it; or seemly understand why our blood pressure may not be as stable, etc.

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    1. yup im 30 this year. im happily single and have mild right sided cp and am facing the similisr issues. i have had to self refer myself to physio (it stopped when i was14)- all paediatric stuff stopped post 16- aged 24 and after 4 sessions they discharged me from seeing them but kept me on the books/files 'incase of problems' because " theres nothing more we can do. its non progressive". bu the effects once you get to 40+ can be progressive you just dont know :-/

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  13. I have a 6 year old that has CP and Autism. Newsflash a child with a disability is NOT a thing! They are still human! Also its BAD grammar its who NOT that. Last ANON poster, CP is NOT a disease, therefore patients with CP isnt the right term to use. Anna you are NOT autistic, autism doesnt define you.

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  14. hi just found your blog. can you let me know what type of Constraint-induced movement therapy device Max is wearing?

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    1. Hi, Veronica! Not sure what you mean? Max is wearing a bandana big. He also wears DAFO braces on his feet.

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  15. This is freakin amazing.... As a 32 year old guy, who grew up with CP, to FINALLY, FINALLY, FINALLY, run into a community of people who have an inkling of what I go through daily...It's just so epic. I often feel that I have to do twice the work for half the recognition but I love when I job well done and everyone's like "damn he was right".

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  16. I have met a woman with severe CP..she is 63 years old and looks 35. She is beautiful. But her family abandoned her and I KNOW the people who are caring for her are totally in it for the subsidized housing and monthly check. I'm an NP but not her NP. I finally was able to communicate with her enough to realize that she is very bright.
    I asked her if she would like to use a computer device such as Dr.Steven Hawking has and she was very excited. All she has is an old alphabet board and she has just enough use of her left hand to point to letters. She gets so discouraged! Her caretakers told her that both Georgia Tech and Emory (we live in Atlanta) have innovative programs for her to get these assistive devices. But her caretakers are more interested in going to church a couple of times a week rather than "dealing" with the medical/engineering universities. Any ideas? Her brother is a well known and well paid lawyer but he hasn't visited her or seen her in ten yeas. Is there any sort of social service intervention? Her caretakers keep saying it's god's will and she is as she is. Once I had to call elder abuse..the cops as they had left her in a hot car for over an hour. I was going crazy trying to find them. How could you leave this vulnerable young woman alone...with NO way of getting out of the heat or being hurt by predators. So I got her water, helped her drink it, opened up the doors and stayed with her. When her caretaker showed up she yelled at ME!
    Help!

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    1. Helena, this is sad to hear. I think you should send the brother a letter, on her behalf. If he is not aware of the car incident, he should be. States have offices for the protection/advocacy of people with disabilities, where you can file a report (sometimes called Adult Protective Services, which can include both elderly people and ones with disabilities). Google this for your state. Note, she may not need a complicated communication device—many people are now using iPads with speech apps. It would be good for her to get a consult with a speech therapist who has knowledge of augmentative communication devices and apps. But first priority, obviously, is ensuring her safety. Please, keep doing whatever you can to get her help.

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  17. I’m 63 and have CP ,left sided hemiplegia, I have been very successful though out my life: married with children and grandchildren an awarding winning teacher and author. I worked until up to had a lung transplant due to pulmonary fibrosis. My CP affects my speech, breathing, fine and gross motor skills sometimes I just tell folks I had stoke because than I get credit for having a brain. In the 50’s and 60’s my folks we encourage to put me away so happy they didn’t they fought for me every step of the way

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  18. I am 52 year old adult with CP, right sided hemiplegia. I had the usual of leg braces, turned in foot, the CP leg shorter that the other leg, a limp, mildly slurred speech, and little function in my right hand. Exercise and exactingly precise speech therapy got rid of the braces, turned in foot,and slurred speech, but I still limp and the hand still is paralyzed. In spite of how mild the CP is (almost negligible), I still get odd looks, gasps, and people who will not respond at all if I greet them. Just today, I went shopping at my local Wal-Mart for food, and the cashier tending the self service checkout looked at me with a look I can only describe as a "How dare you talk to me!" stare when I greeted her. I said nothing, but felt like saying to her that she "shouldn't let her nose rise too high into the air, or else her breathing might suffer for it".

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  19. If anyone is there my daughter just had her 6th birthday yesterday she has cp and Theron thing it affects is her speech and fine motor skills making it impossible to talk or sign if anyone has answers as to how I can give my baby a voice plz helo

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Thanks for sharing!