Replies to This Discussion

Permalink Reply by Liisa Underwood on December 15, 2009 at 1:28pm

My son is 4, still walking well and walking stairs when he insists. We have a Convaid wheelchair-like stroller we send to school with him every day. Our thinking is not so much as for him to use because he needs it. We want the school to have an easy way to help him out of the school in cases of emergencies - this is my primary reasoning. However, he's heavy to carry and they are not suppose to really carry the kids. If he did not have the stroller, then they could not take him on their nature walks around the school for fear they would have to carry him.

I guess what matter's most are:
1. His safety - is his safety compromised by NOT having the chair there. Can he get out of the building easily with out the chair? Can he get to his classes without the stress/worry of hurting himself as much or nearly as much as anyone else?

2. Health and muscle needs: How fast does he fatigue? For his given DMD status can he keep up with school work? Does he get around okay in his classrooms? I guess I would weigh how much he can balance his education and his physical needs. My little guy only goes to Pre-K for 3 hours in the morning and they already see school work fatigue.

3. His self-confidence and independence: Is the chair going to make him feel embarrassed, humiliated, or detrimental to his self confidence? If it's about your view of him, then I suggest trying not to make it about you. I know it's hard to see our boys in chairs. I strongly feel if we take the "power" of what the chair means out of our attitude towards the chair, then our sons will hopefully not have a negative view of the chair as well.

4. The ability for the school to help him to the best they are able: can they reasonable help him without the chair? Reasonable to me goes back to safety. Generally, tripping in the cafeteria is not a good enough reason unless he has a marked increase in the number of falls. Most kids his age behave the way he did in that situation.

At this point, my guy really does not need it. It's a safety net for the school and my peace of mind. They know he is to only go in it if he asks, if the school campus hill is involved or in cases of school emergencies. Oh, I should admit that I have him on a wheelchair accessible bus because I didn't want him to be challenged by the extra tall stairs the buses seem to have. The bus he uses has smaller steps height.

I hope this doesn't seem backwards or terribly wrong to you, but I also wanted him to start some of the experiences of using a chair and being recognized by the other kids with it. This way his classmates get used to it, are desensitized to it and will hopefully not give him any grief about it. For him and the way he's always wanted to be held, I am hoping this will help him get used to being a little physically special. I guess in some ways, I hope it minimizes a mental shock to what is going on with him. I may not be explaining this right. It may or may not be the best decision for him in the long run. Only time will tell. We just do the best we can to help our children cope with the hand that is dealt them.

Okay, my two cents....good luck!

Liisa

• ▶ Reply

Permalink Reply by Michelle Gonzales on December 15, 2009 at 2:01pm

Nicolas is 7 and in 1st grade. At first, we left it as we will take it to school if he feels he needs it. Then I noticed his diminishing ability to walk down long hallways, and was threatened to be taken to the principals office when he would plop down and say he was tired. Now, it is Nicolas' choice to use his stroller/wheelchair for the distant hallway walks to art, PE, music, lunch and it is taken out on the playground for when he becomes tired after playing for 5 minutes. This is actually for his benefit. He at first felt embarrassed, but then realized the necessity and only uses it when he wants to. He'll still walk on occassion to speech therapy or reading class, but it's there for him when he feels he needs it.

Michelle

• ▶ Reply

Permalink Reply by Samantha Dearing on December 15, 2009 at 3:13pm

We started taking Justins chair to school when he was in 2nd or 3rd grade. Alot of times he pushed it down the hallway. That provided him some support. He chose when he wanted to sit in it and when he didnt.

--Samantha

• ▶ Reply

Permalink Reply by jenn on December 15, 2009 at 3:19pm

my 7 yr old max was provided a stroller/convaid style chair since kindergarten, based on the fact that his older brother (also with dmd) needed his power scooter at that age, however, max still walks, runs, plays as well as other kids his age. he brings the chair everyday, and uses it for hall walks and to get to the playground, he then jumps up and plays. we think of it as saving his energy for things he wants to do, i would say, he can use it when it wants it, it will help him save his muscles and keep from getting hurt.

• ▶ Reply

Permalink Reply by Kristi Powell on December 15, 2009 at 4:44pm

My son is 12 and it wasn't until his 4th grade year that he took his wheelchair to school. AND, it is used as a " walker' so to speak. When walking in the hallway, he pushes it and this helps keep his balance, when he gets tired ( usually later in the day) he sits in it. For the most part though, he is not using it that much. Now, I do see that this maybe soemthing we do use more of next year as this has been one tough year with weakness..

• ▶ Reply

Permalink Reply by Anne Hancock on December 15, 2009 at 5:28pm

Thank you all for sharing your thoughts and experiences. It will definitely be a big help in the meeting tomorrow. His team is a group of caring people who have mostly been there from the beginning. They want what is best for him, I just need to remember that and go in with some ideas of how to use the chair in school.

Thanks again,
Anne

• ▶ Reply

Permalink Reply by Jennifer Shumsky on December 15, 2009 at 5:37pm

My son is 8 and we have always used a wagon in the schools so far. In the past a para has pulled him in the wagon for the long distances in the school, from the playground to the lunch room, from the classroom to the gym, from the classroom outside for fire drill in K (that was a long ways) etc., it is a 2 person wagon and up until this year he was always allowed to pick a buddy to ride in the wagon with him which was always a huge deal to the other kids. It helped with his social interactions and the other kids loved it. This year in 2nd grade we have the "special K" kid of the day in the classroom pulling his wagon for him as the other kids are bigger and don't fit in with him. The wagon has always been a part of him and the other kids don't question it. As part of the IEP process the school is required to supply the wagon/wheelchair/transport around the building, not you. Xavier has not asked for his wheelchair at school and like your son, only needs it for distance, and we don't want our good wheelchair beat up at school. We have our next IEP meeting next month, so we shall see if they try to change things on us. Hope this helps.

• ▶ Reply

Permalink Reply by Samantha Dearing on December 16, 2009 at 9:38am

While it is true that the schools have to provide transportation such as wheelchairs, etc. Keep in mind that the ones they provide will be generic models that are not tailored to your child. For example, our school has a basic adult size wheelchair that kids use if they need to. Justins feet would have been hanging down, no back or side or knee support either, every time he was in it he would have been slumped down with his feet drooping. The chairs(manual and power) are really sturdy and hold up well. We had Justins first manual chair for 5yrs and it withstood alot and could have been used for another 5yrs. ALso, one other word of caution....be careful having other kids pull the wagon with your son in it. We always had other kids push Justins chair. One day, a boy was pushing it down the ramp and another child called his name and the boy pushing the chair turned to look and took one hand off the chair and justins chair started turning towards the side and the boy lost his grip on it completely. The teacher had to run and grab it. Everyone was fine and we all laughed, but from there on it was adults only allowed to push Justins chair.

--Samantha

• ▶ Reply

Permalink Reply by Michele Perry on February 2, 2010 at 8:57pm

Hi Anne:

My son has DMD and he uses a chair at school for exactly the reasons you stated. He is quite heavy and his teacher is not able to pick him up if he falls. They do a lot a moving around in 3rd grade, so he uses the chair in the classroom, to go to assemblies and now to go to lunch (because of slowness). It is not so bad. He uses a walker to get to daycare (on site at the school) and at home. We try to keep him out of a chair at home as much as possible.

Do you need a chair for your son? We bought one but it is too small for our son. We are asking $350 plus shipping for it. Would you be interested? Just let me know.

Thank you,
Michele Perry

• ▶ Reply

Permalink Reply by Jessica Rownd on February 23, 2010 at 5:03pm

So I am trying to figure this out. Who pushes your boys in the stroller or wagon? is this written in their iep? Just trying to get a feel for what I needed to put in Wyatt's iep.

Thanks,
Jessica

• ▶ Reply

Permalink Reply by Liisa Underwood on February 24, 2010 at 12:31am

The teacher pushes Connor's stroller around, but he's in a pre-K class. I would not expect other students to push the chair.

Jessica Rownd said:

So I am trying to figure this out. Who pushes your boys in the stroller or wagon? is this written in their iep? Just trying to get a feel for what I needed to put in Wyatt's iep.

Thanks,
Jessica

• ▶ Reply

▶ Reply to Discussion