Ambulatory

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Comment by Holly Kimball on January 23, 2009 at 10:38am

Oh man, I remember just thinking the word "wheelchair" when my son was younger, it was like a swear word, it scared me to death, my son will be 12 in a couple of months and has been in his wheelchair for a year now. What's really cool is that the kids in his "cluster" class at school are really cute with Tyler and they actually fight over who gets to push Tyler around today. He's assigned a "buddy" at school and that friend helps him at recess, lunch, etc. They do get in trouble too being 11 yr. old boys, some days I get little notes from Tyler's teacher saying that one of Tyler's friends pushed him into a girl again today at Recess or something like that. When Tyler was about 9 1/2, 10 years old we would send him to school in his wheelchair so he could get around better and once at home he would walk around the house. If we would go to places where you would be walking long distances, like the mall, or say Disneyland we would also take the wheelchair, I think this helped get Tyler used to the idea of being in the wheelchair. Believe me though, when the day came where he could no longer get out of the wheelchair and was totally ambulatory, was one of the hardest days with dealing with the MD. It's been a year now and we are all a little used to just including the wheelchair into our daily lives. You just have to try to do fun activities with them, you would be suprised how many places you go and can figure out how to get the wheelchair there, just have to be creative, it's hard, but take one day at a time when that day comes. God bless you all.

Comment by Johanna on January 8, 2009 at 4:15pm

I know exactly what you mean, Archie will be 6 next week and he was diagnosed at the age of 2. Every year I feel very emotional in the build up to his "big day" it seems like I'm counting down, obviously Archie doesn't know how this effects me. As for telling your son things I just answered the questions when they arose "Why do I have to miss school for the hospital? Why am I only one to wear gaitors? How comes my friends can all jump? etc..... I have used language he understands, he knows there is a chance he will be in a wheelchair when he is older, which is why mummy does work for the charity and we have to do his stretches, hydro etc..... Although there are many medical experts to guide you on the condition, please remember we know our children best and these forums are great to share real life experiences.

Comment by KarstensMom on January 8, 2009 at 2:59pm

My son is much too young to understand anything, he turns two next month. I have wondered when will be the right age to talk about, but I think I'll just know when the time comes (hopefully). With his birthday coming up soon I am already getting sad about another year going by so quickly. I appreciate knowing what we know now, but it also depresses me as time goes on, knowing and not knowing what, when, how... do you know what I mean?

Comment by *annette* on January 2, 2009 at 10:21am

we have it too, kids saying to Joe "oh you've got muscle wating" "you've got issues" ..I'm dreading the "d" word being bought up or indeed wheelchairs. I have exposed him to many kids in wheelchairs so hopefully it wont scare him but I lose sleep over it :-(

Comment by Mandy on September 2, 2008 at 10:54pm

Don't you just love (not) those parents who think their "perfect" little children are so mature that they tell them things when they are much too young to understand why they have to keep their big mouths shut. I have a friend whose son is very good friends with my older (not dmd) son. She told her "mature" child that Adams little brother would be in a wheelchair soon. He repeated it to Adam who was very upset. That was 5 years ago and Adams little brother is now 12 years old and wow still walking. I love to shut up big mouths and yes we are still friends but I have taught her alot about not shooting your mouth off when you really don't have any idea what you are talking about.

Comment by BOZ4J on June 20, 2008 at 7:10am

...Been there....., once we had play day in K and then 2 days later his little partner told him in school that he would die. ....What a coaccidence , that little girl said this 2 days after I talk with her Mom (without details!) We turn this into ...everybody would die and some people telling this to others to be mean....( anyway I would more afraid about little girl Mom daing from using her cell phone 24 hours /day.,before my son would .Her 5 years old doughter after door closed after Mom , first thing she ask me if she can have my cell phone ....... Also once our prostetic technican was braive to make comment on the picture on the wall in his office (picture with girl in the huge spain braice ) ..She has ALSO MUSCULAR DYSTROPHY LIKE YOU.(and good that he doesn't have to wear similar braice ..... after my eye glance on him.....)

Comment by cheryl cliff on June 18, 2008 at 9:21pm

Hi Jenny,

Alexander had a school assembly when we brought the scooter to school. During that assembly a nice OT explained what and who the contraption is for. Most of the kids in my sons private school come from medical families. Lots of moms and dads are MD's and it appears some of them had already "informed" their children. Of course during the assembly someone asked the big question..."don't these DMD kids die early?"...RIGHT in front of my son! Our wonderful ot didn't miss a beat. He responded by not saying yes or no but asking the kids to look around the room at their classmates because chances are at least 3 in this group won't make it to adulthood!! Then he said we will never really know when anyone will go. The issue was successfully addressed and no one has bothered Alexander with the "death" comment. Actually they were much nicer to him after that assembly.

Yea Jill - I did want to knock him upside the head!!

So many unkind words, so many thoughtless humans bringing them up.

cheryl

Comment by Jenny Garofalo on June 18, 2008 at 8:03pm

tomorrow is the last day of school for us here in NJ. Danny (age6 DMD) will be going to 1st grade and his brother timmy will enter kindergarten. I went to see the principle today because we have an issue with one of the boys attending kindergarten next year with Timmy. It seems his mother took it upon herself to inform her son ( age 5) of what will happen to Danny. Now everytime we see this boy he says "ya know Danny is going to die." I do not want timmy in class with this child whom we have already spoken to and told him he is never to say this to anyone other than his mom. he continues to do so. the principle is very upset and assures us they will not be in same class but neverthe less she is worried enough and getting guidance counsler involved because she is afraid what if the boy sees Danny on playground and says it to other kids. she feels it could cause pandomonium. oh yeah when we brought up to the mom that we wish she had not gone into such detail, she said oh but he is very mature and understands these things. ughh!!!!

Comment by Jill Keenan on June 18, 2008 at 2:48pm

Didn't you just want to knock him upside the head???? You'd think that he would know to be sensitive since he's be doing this for 30 years--maybe b/c he's been doing it for so long he has lost that "quality." I am sorry your son had to hear that and now probably has the "not walking" thing floating around in his head. I don't know how much he knows or what you had already told him, but I want to be the one who tells my son these things, when I want or feel the need to tell him these things. Let's hope this was not his normal behavior and that he just wasn't thinking when he blurted that out. I have learned that well-intentioned people (not that he was being that way) sometimes say and do the darndest things, myself included. Hopefully your future "run ins" with this guy will be better. Here's to hoping the damage was minimal.

Comment by cheryl cliff on June 18, 2008 at 10:00am

Yesterday I had to take our son in to order night splints. The orthotist, who said he has been doing this for 30 years, announced right in front of us "he is STILL walking?"

I could have screamed. I was successful at redirecting the jerk right away however the damage had been done. We recently found out his Dx and Alexander is sensitive, so much so that seeing children in wheelchairs causes upset.

just needed to vent, thanks
cheryl

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