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Wheelchair use for ASD with challenging behaviour

Anonymous

Is it "normal" or "abnormal" to use a wheelchair for a child who has severe autism with behavioural problems? Without the wheelchair the child would be at risk from running into the road or dropping to the pavement. Surely, the use of a wheelchair is justified in these circumstances?

Posted on 20 Jun 10 at 1:00 by Anonymous
sharkbait1

hello,

 we use a wheelchair for my son he has adhd, severe asd non verbal and behaviour issues and if we take him out its in a wheelchair for his safty and ours as he has damaged my back with him.  he bolts or drops to the group.

 what makes me angry tho is we had to fund the wheelchair ourselves as OT do not see asd as having mobility issues

Posted on 22 Jun 10 at 16:39 by sharkbait1
Angela

Thanks.  I am very grateful to hear that you are going through the same issues which we have had. Luckily we were referred to the wheelchair services by a very kind and helpful GP a few years back, now.

However, we have recently been heavily criticized by several "professionals" for our use of a wheelchair for a 12 year old child with quite severe autism and behavioural problems. My husband also damaged his back a few years ago through having to lift her off the ground. I have recently damaged by wrists from trying to struggle with her to get her to move. She often drops to the floor and refuses to move. At 40kg she is not very easy to move.

 She was referred to the "professionals" for her behaviour problems at school (she has since been permanently expelled from school) and all the "professionals" - clinical psychologists - were concerned with was the fact that a 12 year old child was using a wheelchair!

We've had to cancel our future appointments with them (that was what they were hoping for) and are now left on our own to educate her at home. I think that it is just sickening the way these so-called professionals behave. All they are concerned with is their own political correctness and their own "professional" self- image. Narcissists - ALL of them! They get paid to judge people like us.

Anyway, thanks for your support. I really appreciate it. :)

Posted on 25 Jun 10 at 23:35 by Angela
Anonymous

I know how difficult this situation can be, my son was brain damaged when he was born, left with severe learning difficulties and dreadfully hyperactive.

 

I'm really concerned that you have decided to educate you child at home  -  you all need some time apart. 

 

 

 It's desperately important that you get some education  -  if you don't like the way the professionals are treating you just complain and complain higher and higher up the education ladder (I ended up with the Secretary of State who finally gave us what we wanted).

 

Parents of normal children can pretend that they will live forever, we can't.  Your child needs to get used to being apart from you, ready for the time when you are too old or ill to care yourself.  That sounds hard, but it's true.   Education is an important part of the process of gradual separation.

 What respite do you get?  I suspect none.  Keep on about this too  -  if the respite carers tell professionals how difficult it is to cope with your child, that will help your case enormously. 

How about keeping a diary for a week detailing all the problems, and how you are feeling. 

Last, but by no means least, I hope you are getting the highest rate care and mobility, free car tax etc. etc.

 

Good luck.

Posted on 6 Jul 10 at 15:14 by Anonymous
Angela

Thanks for your reply. So sorry that I did not see it earlier. I've been very busy with the school holidays and all the kids at home.

 Your post means so much to  me. This is the most (only) support I've had for I don't know how many years. (I don't get out much.)

I will try to keep on fighting the system. Unfortunately, no, we don't get the high rate of anything - just the middle rate. Thankfully, my husband is on hand to help me a lot which is becoming more and more necessary as my daughter gets older and physically stronger.

 I've recently come back from a camping trip which we made the mistake of going on with some "friends". Despite this massive achievement - i.e. managing to take my disabled child camping for the first time in her life, I was met with condemnation and criticism by the people who went on the camping trip with us. Example:

"Why does she need a wheelchair?" and "Isn't it illegal to tie her into a wheelchair?" and "Maybe you should learn to drive so that one person (i.e. my husband) does not have to do all the work (e.g. cooking whilst I look after the disabled child)." and "Isn't it illegal to keep her off school?" (No - because she was permanently expelled. D'uh!!)

The criticism was never-ending. So, you can see how much I appreciate your post. Thank you so much.

Maybe I need to join a support group. Most of our "friends" don't understand what we are going through.

Thanks again. :)

Posted on 19 Aug 10 at 7:42 by Angela
Angela

A tip for anyone else reading this thread (and thinking of going camping):

Put padlocks on the zip of your tent from the inside, to prevent the escaper from escaping. That way you can sleep without worrying about your child.

Posted on 19 Aug 10 at 7:53 by Angela
Pickle

We used wheelchairs for both my siblings with autism and severe learning difficulties for the same safety reasons you do.  People at respite and their schools also used them.

At the secondary school I worked at several children had their own wheelchairs that parents and staff used to take them out even though they could walk.

My siblings are encouraged at their schools now to be able to go out and walk (with close supervision/ reigns etc) and this is something they are working on and slowly getting better at as they get older.  This is easier to achieve in certain locations and with a team of staff.  

You know yourself what you feel comfortable and safe doing, so you should not be made to feel bad about using a wheelchair for your daughter.

Posted on 21 Sep 10 at 14:22 by Pickle
Angela

Thank you so much for your support and helpful post. I need to print out this entire thread and frame your post, especially. Thank you.

 It is unbelievable how much we have been persecuted regarding my daughter's wheelchair. People can make you feel "abnormal" and treat you like a "freak". It is just sickening the way they have treated us.

 Your post is so precious to me because it has helped me to put things into perspective and to feel "normal" again. Thank you so much for that.

Posted on 22 Sep 10 at 1:59 by Angela
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