Lots of Q's for wheelchair users - Cerebral Palsy Message Board

2winmom · 05-19-2005, 10:02 AM

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!

Steffers2318 · 05-19-2005, 12:12 PM

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

NJenn · 05-19-2005, 02:45 PM

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

bsjones · 05-19-2005, 04:09 PM

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

2winmom · 05-20-2005, 06:51 PM

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!