Hi, I posted awhile ago about my 3 year old twins, one of whom has CP. She wears AFO's and uses a walker for very short distances but mostly crawls. She has a weak trunk and her left foot turns in pretty severely. We had a botox follow-up with a specialist who is now recommending a wheelchair for my daughter. She said that she will need it for longer distances at least and when she is school aged, thinks that she will prefer it when going to and from the classroom etc. I have to admit, that the news came as quite a blow. My husband and I always knew deep down that our daughter would probably need a wheelchair. We visit the zoo a lot for example and knew that she would never be able to walk the whole way. But for some reason hearing it from the doctor made me really sad and afraid. So, to those of you that walk or use a walker sometimes and sometimes use a wheelchair, I have a lot of questions. I am mostly worried about school and how my daughter will feel and be treated. She is very smart and happy and I am afraid that when she gets older she will feel left out and different and that this will make her sad. How does it feel to be a child (and and adult for that matter) in a wheelchair? Did you feel included and happy at school? Also, what did you do at recess, and how did you get around in the classroom? My daughter starts preschool next year and I am very nervous. I just don't want her to lose her special sparkle and happiness. Any thoughts or input would be appreciated. Thank you!

Hi,

I have to use a wheelchair for long distances also...like going to the mall (and the zoo! :)) and such...I get tired pretty easily when walking, but I always used my walker to get around in school, I just took breaks when I got tired, left a couple minutes earlier for class, etc. .... everything worked out fine in terms of walking, I guess it just depends on how much muscle strength your daughter has and whether she prefers using the walker or wheelchair.

As for how the other kids will treat her, I honestly can't tell you 100% what to expect, but as for me....well, every kid gets picked on to some extent growing up--kids are cruel sometimes--but I never experienced anything too bad at all. For me, I got more insecure as I got older (probably because of the whole "dating" aspect), but at your daughter's age it seems that most kids may question why you are "different", but you can give them an answer, they say "oh, ok", and then they forget about it and treat you like everyone else. :)

If she is going to be going to places like stores and things in her wheelchair, the only thing I would tell you to prepare your daughter for is people staring, as well as young kids who often point and say "Look at that!" and such....just let her know that some people may not be used to seeing a wheelchair, but that doesn't mean she should be embarassed...people are just curious, but just smile and say hi :)

Like Steffers, I use my chair for long distances. As I age, though (am 26), I use the chair more and more. Please try not to look at the wheelchair as a negative in your daughter's life. It will add to her quality of life immensely. The truth is (and I'm sorry if this is blunt, but it IS the truth), your daughter has CP, and she will get picked on by other kids whether she uses a walker or a wheelchair. That is the saddest part of growing up with a disability, but it makes us strong and resiliant adults.

Personally, I prefer my wheelchair in many situations because it takes the focus off of how I walk, and puts the focus on who I am and what I have to say as a person. I find that people actually stare less when I'm in my chair, as opposed to walking. I have more energy and can move faster in my chair. After a day of walking, I am sore, exhausted and cranky. But after a day of rolling, I still have energy to do things outside of my daily work schedule. I'm not confined to my chair, rather I am liberated by it. Your daughter will grow to feel the same way, as long as you don't place value judgements on the wheelchair. Encourage her to use it if and when she wants to. You'll soon see that she'll adapt fine. That sparkle and happiness will still be there, and will probably be brighter, because she'll expend more energy having fun rather than just trying to move.

Good luck to you and to your daughter.

NJenn~~ 26, spastic diplegic, sometimes walks, sometimes rolls

Njenn, you always make a lot of sense. Thanks!

It really helps me to hear from adults who have experienced (to some degree as all cases are different) what I envision my daughter will be facing. Thank you so much. I really admire you!

Glad I could be of help to both of you, 2winmom and bsjones. You are right, 2winmom, all cases are different. However, the one universal I've seen is exhaustion from walking in kids and adults who are at a level 3 or 4 on the Gross Motor Functioning Measure. I'm a textbook level three, and it sounds like your daughter probably is too if they are encouraging chair use this early. Knowing that, though, it's so important not to put limits on what these kids can do. Walking exhausts me, but I still swim and lift weights. I'm also doing some distance training with a racing chair. These are all activities that your daughter could probably do one day as well. Physical activity, that is not exhausting, is so very important. She might progress from a walker to forearm crutches as she gets older as well. If so, this can increase her functional independence.

You know, playing on a playground in a chair isn't so bad. I always had one or two close girl friends who always hung out with me on the pavement. We liked to play 4-square and jacks. If you send her walker to school with her (which I recommend, it's extra effort, but it gives her that all-important choice), she can always choose to use that on the playground as well.

Please keep me posted on her progress!

Nicki, aka NJenn

My son, who is almost 8 years old uses both a walker and a wheelchair. He is very well accepted by his peers. WHen he first started school he was in the wheelchair all of the time. The kids were curious, but when I explained it in their "language" they accepted it and him. At times they want to play with his walker, but only because they think it's really cool. :D Although he has only been walking for four years, he is beginning to have greater difficulty with his walking and is relying more and more on his wheelchair. I felt the same way you did when we got his first chair. It was frightening and sad, but eventually I learned it made such a huge difference in his ability to interact with his peers and gave him a sense of independance that he otherwise would not have had. When he uses the walker, he tends to get very tired and by the end of the day he just cannot focus on school work because of it. The wheelchair allows him to focus on his academics. We are now looking at getting him an electric chair so that he can manuver it himself (he cannot use a manual chair due to upper extremity involvement)

Your perspective as a parent is very helpful and seems to echo Njenn and Steffers responses re: having more energy when using the chair. It's funny, I never saw the chair as enabling my daughter to do more, but now I see that I was wrong. Thanks again! :)

It's funny, I never saw the chair as enabling my daughter to do more, but now I see that I was wrong. Thanks again! :)

It's not that you were wrong, per se. People who have never used a chair or been around a chair user, cannot comprehend that there would be any benefits to using one. Let's face it, there are no positive images of people in chairs in the popular media. We are a very "walking-centric" culture. I commend your daughter's doctors. My experience has been that most of them are "walking centric" as well. Keep us posted, and let us know how she adjusts to her wheels!

listen I hace Cp and I am a twin. I don't have to use a wheel chair but I go to highschool and I have to deal with other kids and their looks. You have to face that your different don't let it get to her make her feel like it does not matter once kids see she does not care they stop caring.

My nephew will be using a chair when he starts kindergarten this fall. Its a manual chair and Nick has hypotonia with spastic quadrants, which means his arms are involved. He is stronger and has more dexterity on his right side. My sister wants him using a power chair because she's concerned that he'll be essentially wasting energy trying to keep the chair going straight due to his strength imbalance in his arms. She's also been told my the woman who does Conductive Education with Nick that using a manual chair will increase the spasticity in his arms and work against the stretching and muscle lengthening she's trying to do with him.

Does anyone have any opinions or experiences using a manual vs. a power chair with spasticity in your arms? I've noticed alot of the adults with CP that post here are diplegic or hemiplegic and it would be so helpful to hear from adults with quadraplegia or parents of kids with quadraplegia.

Thanks so much for sharing!

I am a mother with a 24 year old daughter with CP. I am new to the board because I am looking for answers of my own with pain she is living with in her knees. I wish she had used a wheelchair part time as a child. My daughter wore out her knees. The doctors tell us she has the knees of a 90 year old woman. She has been in a wheelchair for the past 3 years. When she first went to the chair she was very upset. For her it was a sign of giving up. For me it was a God sent. I told her it made her appeer less handicapped. I didn't worry about her falling and getting hurt as she had done many times in the past. After she finally came to terms with the chair she had the sparkle back in her eyes. It brought freedom to her life. She could keep up with friends and family when she went out. It eased everyone around her because they worried about her falling also. Time could be spent on enjoying life. She still says she must try to walk around her home so that she doesn't lose all muslce tone in her legs. The best advice I can give being a mother who did the best she could with what information she had is to start now giving your child the oppertunity to talk with a child phys. to help her understand who she is. They have to face that they are never going to be just like their friends and that is ok. My daughter is type A and was driven to fix her body through hard work. When she could not do it she turned to unhealthly ways to try to make that happen. In elementary school she was the smartest in the class and was so very happy. Start NOW and get ready for Jr. High. Kids are very curel. She lost her sparkle there and it took years to get it back. She walked with a walker in school and was teased everyday. However, just like they pick on other kids they found her weakness and hit her there. She was so smart that she made it impossible for the teachers to scale test scores in the classes that she was in making the other kids, mostly girls, mad. So they picked on her to get her back using her handicap. If she had been ok with herself she could have with stood the harsh words. I didn't know what to do but I do now. It doesn't matter if she is the happies child she still needs someone to talk to about herself outside family and friends. I also wish I had taken my daugther to camps where she could see she was not the only one with a handicap. I wish I had found places where she could play sports for the handicap. I tried to mainstream her so much that I forgot to except it myself that she was differentand that different is what makes the world beautiful. One more thing. Don't try to fix it. You can't. Just love your child and let her say this sucks. For the first time the other day after years of therapy my daughter smiled and said "Mom you know I think I am beautiful and I like just who I am." I cried. Thank God for answered prays. Build a strong faith with God, talk and share, and cry together when needed. I want you to know how smart you are to be thinking about how your child will be treated. I wish I had had thought that way. I never dreamed kids could be so mean. I am not so worried about elementary school but would take action before sending her to Jr. High. I sometimes wish I had home schooled her through those important growing years. However, I think if we had just been ready for it that things would have turned out different. My daughter ended up with a life threating eating disorder becaue of trying to fix her body and the hurt she felt on the inside. I have great news to report. You can make it through what ever life gives you. With the help of our Lord she is now working a full time job in her field. She grauated with honors and with a 4.0 receiving her masters this summer. She likes herself and enjoys life. She lives in pain and we are working on that now. The other day when she was put to bed because of her knee she looked at me and said "Mom I hate my knees and legs." There was a time I would have tried to talk her out of that statement. Today I thank God for that statement. I told her "You know what, I hate your knees and legs too." Then I told her how much I loved her and how proud I was with the statement she made. She ask me why? I told her because there was a time when she would have said "I HATE MYSELF!" I thank God for the progress we have made. YOU are going to be fine. You are already ahead of the program. Remember there are a lot of us moms out here just as scared. Keep the faith.
God bless you and your family,
distrubator
Mom still praying and learning something new everyday.
Sorry I got so long winded.