I've had a hard day, and I realize it's time to consider part time wheel chair use. I used to say "Absolutely NOT!" If he can walk, then we'll make other accomodations and do anything else." Now, we've just gotten back from a special needs event. I realize that even in an adaptive environment with understanding supportive staff - my son has times that he needs to be in the wheelchair crowd. He cannot run or jump at 5. He falls 20 times a day, but only in dynamic situations. After a year of PT, he no longer falls in static positions. Other children push him over by just being kids walking past someone else. Adults don't touch others as they walk by, but kids do. When they walk by him, they push him over, even with a light touch. In a group of kids, they also step on or kick him before he can get up out of their way. He walks very slowly and cannot keep up with even other slow walkers. He is homeschooled, so I hadn't thought about him being in school environments soon. So, he doesn't need it full time, whereas he would in public school. He would need it for homeschool co-ops, group activities, places where he might get hurt and walking long distances.
Has anyone been there? Words of wisdom from occasional, part time wheel chair use?
Use your discretion and what your gut instinct tells you. For his own personal safety there may be times he will need to use a wheelchair parttime but other times encourage his independence as much as possible. He needs to walk for not only his independence but also to strengthen his muscles and help his co-ordination. You are doing a great job and I can see you are v observant of your precious son. He may lose confidence and get hurt if he falls so you need to have the chair for backup in times like this. Well done to you and your very brave son x
I am an adult who uses a wheelchair part time and so I thought I'd put in a bit of my perspective in hopes that it will help.
I resisted at first, feeling that it was a sign of failure or weakness to use the chair. But, honestly, big events and situations with a lot of walking or a lot of people are more comfortable for me in a wheelchair. I don't have to worry about being knocked over, losing my balance or getting exhausted so quickly. I have found that in some situations, I have a better time in my wheelchair than I do when I am trying to tough it out without it. It also helps other people understand that I have a real disability and can't run, walk or stand as much as they can.
I hope that helps you in your negotiation of difficult choices. Best of luck to you and your child.
Disabled queer mama to one preteen, one teenager, 5 cats, 7 chickens, & 1 dog
...granola punk urban homesteaders...
"I found it is the small everyday deeds of ordinary folk that keeps the darkness at bay... small acts of kindness and love."
-Gandalf, The Hobbit
My ds used a wheelchair part time for a few years.He's now too big for it,and we just try to walk slow.His legs have always hurt him after walking for a while.The neurologist we saw said it is most likely a mitochondrial issue,but the only way to really confirm it would be a leg biopsy and there is no sense in putting him through that as there is nothing that can really be done.He loved being in his wheelchair,he also has issues with crowds,and sometimes he just shuts down,so he would hide under a blanket in his chair.It really helped him,and helped us be able to go out and do more things,such as the autism walk,festivals,that kind of thing.I miss that,we still go places but we don't do the actual walk,we hang out at the different booths and things,or at festivals we walk really slow and take breaks,but we usually have to leave much earlier than we would have with the wheelchair.
You may even be able to get one covered by your health insurance.I didn't try with ds as one of the agencies that provides his services gave us one that another client had outgrown(I'm going to give it back to the agency so they can pass it on again).I'm not sure exactly how to go about that,but it may be worth looking into.HTH!
We too are considering some sort of wheelchair for my DD, 5. She also is not a strong walker, has poor balance, moves very slowly and tires easily. We use a BOB stroller but she is really too big for it- not weight-wise, but hight-wise she is just too tall. I thought a smaller, lightweight chair would work well for us, since we want her to walk as much as possible, but realize that there are times when a chair makes more sense.I haven't done any research yet, so I am following this post with curiosity! Anyway, just wanted you to know we're in the same boat- I didn't want to get a handicap plate on my car either, but finally realized it was better to park close and let her walk than park far away and have to carry her! It's so hard when they get too big to carry around! My DH and I are the only ones that can even pick her up any more!
If a wheelchair will help your son participate more fully and safely in group activities, and if he's willing to try it, I'd say go with the wheelchair. I can understand not wanting to go backwards in physical skills; we worked so hard with our daughter, for so long, to help her maximize her potential with walking. Ultimately, though, it became blatantly obvious that the energy she was expending in just walking was keeping her from really being able to participate in a lot of life. If this is true for your son, then I can see no harm in using a chair at those times, and walking at other times.
Eventually, my daughter did go to full-time wheelchair use, but that was a decision we allowed her to make. She had just become so much more capable in her wheels, and walking with long leg braces and forearm crutches was not getting any easier or more efficient. I do think that walking is of great value; it's good for muscles and for the digestive tract, bone growth, etc. But in your son's case, maybe the wheelchair can be reserved for special occasions, and he can continue to walk at home or in safe environments out in the community.
Also, this From MommaRhi jumped out at me: It also helps other people understand that I have a real disability and can't run, walk, or stand as much as they can. While I never label my daughter as "disabled", because she isn't, she does have a disability. When she started noticing how other kids would make comments about her, or think that she was much younger than she really was, or even think that she must be a "baby", her feelings were really hurt. In her wheels, while she still gets the detested stares, at least she is giving a more accurate picture of who she is---a girl (young lady, really, at 15 now) who uses a wheelchair. This line of thinking may be controversial; I imagine some parents would rather have their kids be able to look and act as typical as possible, rather than use a very obvious device like a wheelchair....?
Joni and kids, incl. Michaela, 15, lover of European history and user of wheelchair due to hydromyelia
Thank you for posting about this. My son does not need daily wheel chair use, we don't even have one, but it would be nice to have just on days we have to do lots of walking. He has Charcot Marie Tooth and most people would never know. He has been going to PT for the last 9 months. It has help so much! He looks healthy and is very active most of the time, but the problem is exhaustion and cramping after too much walking in one day. He is now 10 and loves sports and going places, but in the last year he has not wanted to do some things he loves. Like the zoo and theme parks. We did plan a short day at the zoo this summer and we took breaks every 20 min. and he did fine, but his legs were exhausted after a few hours. He did not want to go on an annual church trip to Kings Island because he had such a hard time the year before.....Next summer, we are trying to figure out how we can do another Disney trip with the whole family? Our plan in the past was use a park stroller, then the last time we went he was just too big for the stroller so we did 1/2 days. I don't want him in a wheel chair, but on days like this, he needs something to help. As a mother I hate to see him in pain, but I also don't want rude people at the parks saying things when he jumps out of the chair and runs to something. I have not even mentioned anything like this to him, but my husband and I have been trying to brainstorm and come up with a solution....Any ideas would be appreciated.