March 13, 2012 at 11:34 am #74301Sorry, long, confused post!
I am new to these boards and in a bit of a quandary at the moment. My son, aged 9, has congenital myopathy (unknown type at moment, poss bethlem or central core), arthritis, jaw issues and hip issues. We are very lucky as he is able to walk quite well but not long distances. At present he uses a manual wheelchair if on a school trip or out with the family. He does not self propel as his arms tire as quickly as his legs. At the moment he is at a small, private school in year 5. He will be entering main stream schooling for secondary school and the 2 closest schools are huge, sprawling comprehensives.
The quandary I am in at the moment is –
There is no way my son will be able to manage all day walking at such big schools. His OT has suggested applying for an electric wheelchair for him to use there, especially as they are worried with his seating issues and the OT thinks this way he will have no mobility issues at school and his wheelchair will have the proper postural support he requires. I am worried that this is a bit OTT as he walks perfectly well at his present school and it will be very odd as he will wheel to PE and then jump out and participate in PE lessons with everyone else. The point the OT made is that without the chair he would not be able to do PE at all as he would have fatigued too much, she also states that he will need something like it for his independence as he gets older and wants to go out without his mum pushing him!
I think he needs something more like a mobility scooter. However, I don’t know if the school allows this and whether they make ones that fit him and give him postural support. We are about to go for a statement of physical needs as he is not even known to the ed dept due to being in private schooling.
The question is, which way should I go? Mobility scooter is an unusual choice and might not fit the school chair lifts and won’t help his posture as he wouldn’t be sitting in it during lessons. Powered wheelchair makes him seem much more disabled than he is and may be too easy for him (might lose muscle power by lack of use).
I know that we are lucky he doesn’t have DMD or anything worse but we are caught in a rut where he is too disabled to manage without any help but not so bad that he qualifies for all the help. We don’t even know if he will get a statement yet( only just started process) or even funding for a wheelchair.
Sorry for the long post, I hope I have explained our situation so that we can hear any insights you have,
AnnaZebadwParticipantPosts: 10Joined: 13/03/2012March 13, 2012 at 11:51 am #84807Re: Sorry, long, confused post!
I personally would go for an electric wheelchair but then I don’t like scooters as I think they are cumbersome and make you stand out more.
Electric chairs these days are fantastic and some come in some brilliant colours, for getting round school I think it would be more manoeuvrable also how will your son be getting to school transport wise as this might determine your choice of scooter or chair.March 13, 2012 at 6:37 pm #84808Re: Sorry, long, confused post!
Thanks for the prompt reply Vicki.
At the moment I will probably be driving my son to school as it is 2 miles away. However, we do not have any kind of adapted vehicle and although we have high rate mobility now, we won’t always have it as he can walk far enough. He qualified for high rate recently due to major hip surgery and has only qualified for one year as that is enough time for him to get back on his feet – as it were! So it needs to be able to fit in our car, luckily, as I have 2 other children as well we have an MPV with a huge boot space but I would have to get whatever we choose into it!
Electric wheelchair does seem to be the way to go but then we have car problems as I would have to lift it in. We cannot adapt our present car as it is a 3yr lease car, we do not own it.
Maybe I am just in denial and don’t want him to have the electric for that reason but everywhere I read that electric wheelchairs are for those that can’t walk or only very limited. I don’t want to feel like a fraud or to undermine those that don’t have a choice, I feel guilty enough using his blue badge for him in case someone else needs the spot more!ZebadwParticipantPosts: 10Joined: 13/03/2012March 14, 2012 at 12:00 am #84809Re: Sorry, long, confused post!
I’m an adult but I thought you might find my experience helpful. I use a powered wheelchair at work but only occasionally – I use it about once a fortnight if I am particulary tired or have to do some extra walking. A manual chair is not useful because my arms are actually weaker than my legs. It is something I have only recently acquired but it has been great because it has made it possible for me to get around work without completely knackering myself not to put too fine a point on it!! Yes, it might seem kind of weird to people who don’t understand to see someone go somewhere in a powered wheelchair and then get up and walk but I have found that if I behave like it is the most normal thing in the world people react to me and not my chair. I did wonder whether patients would be distracted by the chair (I’m a health professional myself) and whether I would either not get taken seriously or constantly spend time fielding questions about me rather than doing my job but it has not turned out like that at all. It is generally even easier with other staff because when you see people regularly you get used to each other and the staff I’ve worked with for a while all have a fair idea what I can and can’t do. Similarly I would hope that your son will get to a point where his classmates ‘get it’ and understand that sometimes he uses a chair and sometimes he doesn’t – two points I thought of –
1) I’d say a scooter isn’t a good idea – I had the same thoughts as you about a scooter being less ‘disabled looking’ when I first thought about getting a mobility aid for myself but when I tried a scooter in the shop I nearly crashed it because I wasn’t expecting to need so much arm strength to steer it!! Your son may not find them easy to use. Also Vicki is right about the size of them – you can get much neater powered chairs.
2) Re transporting the chair – have you thought of leaving it in school? My chair stays in work and doesn’t come home. You would need to discuss it with the school but perhaps there is some locked room or keycode protected room you could have it kept in. Perhaps there is an administrator’s office it could live in?? It would need to be a room with a power source for charging the battery.
Hope this helps a bit with your thoughts….AilsaParticipantPosts: 17Joined: 09/12/2011March 14, 2012 at 12:59 am #84812Re: Sorry, long, confused post!
Think this has already been said but for me I was in the same position and got a powered chair for high school. I used to leave my chair outside classrooms and walk into class and while I still could I used to have one day a week I didnt use it (ie my classes were close together). I was also allowed to leave the lesson 5 mins early to get to my next class without attempting to mow down lots of students (similarly if I was five mins late teachers understood). The chair stayed in school over night charging. I had physio once a week in school too to help maintain my mobility and it was just someone who would be keeping an eye on it so the chair wasnt causing more harm than good.
Power scooters are fine for shopping etc but they’re an extra barrier in every day use in my opinion…opening doors is infinitely more difficult in a scooter for instance.
Also, I got a taxi to school every morning and afternoon provided by the school/LEA as I couldnt get a school bus – it might be worth looking into that to give him a bit more independence? There was three or four of us that were taken to school and not all of us were in the same school but we were picked up and dropped off at the door.
Dont know if that helps but it’s advantageous for you to fight for the things now whilst he only needs them to a certain extent and have things in place for when he needs to rely on them more.
What about second breakfast?
IG: https://www.instagram.com/kissofdarkness1/kissofdarknessParticipantPosts: 266Joined: 01/10/2010May 17, 2012 at 10:27 am #84813Re: Sorry, long, confused post!
My son is 4 and we are just about to get a power chair for him. It was a big decision and adjustment for us but he loved the trial one and can’t wait to have his own. We have the car issue too – the chair weighs about 10 stone so i can’t lift it and we have a lease purchase car. I’m going to ask the mobility people how exactly they fit the hoist to the inside of the boot and then will ask the car people if they will allow me to do it. If not we are going to have to look for other solutions. I think we will leave it at school during the week though and bring it home on weekends.
I know what you mean about the power chair being ‘more disabled’ looking but at the end of the day if it helps then it just has to be done. It is hard though – sometimes whatever options are given seem to just be so medical and there must be other options first. My son needs a school chair with arms and a footrest so they want to put him in this big contraption that looks hideous. Why can’t i just get a chair with arms (weirdly notoriously hard to find) and get a step for his feet??
Good luck – i will let you know how i get on with the car thing.amymorrisParticipantPosts: 24Joined: 30/10/2011May 24, 2012 at 11:35 am #84814Re: Sorry, long, confused post!
It is very difficult for your child in being in a wheelchair but this will keep as long as he will get a support group from his parents and friends. It will give him encouragement to do things normally.AnonymousInactivePosts: 0Joined: 01/01/1970May 24, 2012 at 3:29 pm #84815Re: Sorry, long, confused post!
I suppose it depends where you live, but couldn’t the laddie wheel to school in his electric wheelchair? They have the juice these days don’t they? His siblings could accompany him on foot. I guess things are different now, but i used to walk 2 miles to and from Primary, as well as High School.ranaldParticipantPosts: 747Joined: 05/09/2010
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