My son is now 6 and a half years old. We have been having a bad run this last week. We have a 9 week old baby girl who wont settle, so we are sleep deprived, and on top of that we found out last week that our son, William, has almost stopped growing from the increase in steroids we had to do 6 months ago.
Today we were contacted by his school who discussed getting a wheelchair for our son as when they have to go to the ovals for sports, he is getting tired walking down there, and once he is there he likes to be able to sit down to rest and doesnt want to sit on the grass (autistic trait)
I have read the previous posts about wheelchairs and scooters, but Im wondering if there is anything else out there that anyone has seen. Im just trying to get as many ideas as I can, as I know that William is stubborn, and he never wants to stand out in a crowd or have something that draws attention to him. Also we have never discussed with him that he has DMD as we wanted him to have his innocence for as long as possible as we know that once he knows then things will change with him.
At the same time getting a wheelchair would solve the problem, however we are finding it hard to go that route as it means having to talk to him about it and also admitting to ourselves that he is progressing which is hurting us in a way I cant describe....
I can only imagine what a huge transition this must feel to face. It sounds important to have help for William. My 6 year old's school campus is very hilly, so we had to have an adaptive chair from the start which was Pre-K. We used an adaptive stroller, but that didn't matter to him in Pre-K. It is more so now, but I just cannot really afford much more right now. One thing I highly recommend is considering something that can handle terrain other than just side walks. The Convaid stroller we've had has done well, but now e wants to go hiking with his friends. We found more and more that the next step was either a scooter with good wheels or a jogging stroller. Here is a post I had about this... http://community.parentprojectmd.org/forum/topics/all-terrain-wheel...
We ended up getting the Special Tomato Special Needs Jogging Stroller because we could not afford the scooter.
zappy 3 pro electric scooter is one that is popular too!
We also have the Special Tomato, since we weren't ready for a clinical stroller or wheelchair (still aren't ready!).
He doesn't seem to mind using it at the mall or other long-walking trips (he knows his limits). In fact, on a recent field trip, his classmates thought it was pretty cool!
It's built fairly well and moves around very easily.
Hope this helps!
My son in six years old also, and we have just ordered him a wheelchair. He loves having it in school to help with the long distances, and at home we still use a wagon or a special needs stroller. He chose the color of the chair and even picked out wheels that light up when you drive for the front. He is pretty excited about it, but it is still hard for us to see him in it. I am hoping that we will get used to it soon.
It's a difficult situation. I have 2 with DMD who are now teenagers. We didn't use anything at school as schedules were modified for walking long distances during the day. Is your child in Adaptive PE? My kids were in Adaptive PE so they had their own PE to fit their abilities and when appropriate they joined the regular PE classes at times they did things that they could participate in easily. So they didn't go out to the fields for the PE that much.
However, if that isn't an option and that is where he goes to play and recess then I would suggest consulting the Adaptive PE teacher or an Adaptive PE catalog as they carry a wide variety of mobilitly equipment that used in PE look like bikes or ride on devices that use little movement to get them going. These aren't wheelchairs or motorized scooters. There was something that one child used for mobility in kindergarten that was kind of a cruiser thing that had a seat and wheels but moved by holding on to handle bars and moving them side to side and then the thing would move that way and it didn't look like a wheelchair..An adaptive bike might help too. I can't remember the names of the equipment but going through the Adaptive PE equipment route might help and the school most likely would pay for it.
I felt the same way when my son was that age, about protecting him from the knowledge of DMD. However, for our son it made him feel better to know that he had a specific problem. Before he thought he was just slow and not as good as the other kids. Knowing that he had "special muscles" helped him feel better about himself because he knew it was not his fault.
And most of the kids at school have been great with him, they all think it is cool to have a stoller or wheelchair. They used to be so excited to be Zach's helper for the day and help push him down the halls!
ALso, FYI, most insurance will cover a mobility scooter, we did not pay a dime for ours!