[NoahsMom]

My 14 year old son, who has Down Syndrome and is a C6/C7 incomplete 7 months ago, still is supremely fearful of falling out of his chair. To me, it seems completely irrational because even when we need to get him out of the chair, it is not easy (he is 150 lbs.). I want him to have more independence in doing his own transfers someday, but we just can't get past this fear he has. He won't reach outside a tight little circle around his wheelchair, even though his arms could move. He latches onto the back of the chair, holding on for dear life. I can't argue him out of this fear - no amount of discussion puts him at ease. Because of his cognitive delay, it's hard to appeal to his sense of self improvement. During outpatient therapy, too much time is needed just to get him diverted from this fear. How do I deal with this? These are likely real "sensations" he is having and need to know if others who have had this found some effective tools to overcome the fear.
Thanks.

[gsp23]

I havent had the fear you are talking about but here is a thought...

Does he trust anyone? If so then maybe he just needs more practice moving outside that tight circle to see that he isnt going to fall. So for example, have someone he trusts stand right next to him and have him try a certain motion such as leaning in a certain direction or reaching in a certain direction. Put your hands in front of or below there and reassure him you will catch him if he falls. Kinda the same logic used in teach a kid to ride a bicycle. After he has done that same motion and starts getting comfortable then you can have him try a different motion or direction, but get him used to one at a time and if he falls be sure to catch him right away so he trusts you wont let him fall. Then as he does it more and more you can let him slip a little more each time as he starts to get more comfortable.... just a thought.

[Apparelyzed]

Ok, here's my advice as a C5/6 Quadriplegic.

It took my physio's about 6 months to get my sides off, as I was scared of falling out of my chair.

What helped me was peer competition in who could touch the floor from the side of their wheelchair first.

What we did was put an object on the floor, and see who could pick it up. The more the practice, the better our balance, and the less we needed the sides on our wheelchairs.

In the end, we could all pick a coin off the floor, even as a C5/6.

It's all a matter of confidence. Get him to just sit still for a minute without his sides on, and then put the sides back on. Then increase it to two miniutes and so on.

Then, get him to take five pushes without his sides on, and increase it and so on.

If he's too scared at the begining, before he gets into his wheelchair, sit in his wheelchair and push around the room without the sides on, and lean right over the side of the wheelchair to show how stable it is.

There is no quick fix for removing the sides, but once he does, he'll never want the back again!

Regards

Simon

[Joed]

During my first six months or so of being home, I didn't trust myself/body to reach out for something beyond a certain point. My torso strength was not dependable enough....even though my brain still thought it was, ending with me down on the floor a couple of times. And these 'torso lapses' were intermittent too, making them all the more unpredictable. (my main injury is low....thoracic/lumbar-ish)

Maybe this is what you're son is experiencing. It would probably only take one bad experience like that (not necessarily with actually falling, but an experience when his body folded over and then the thought that he can't control or stop himself from falling) to cause him to generalize his fear.

Continued torso strengthening to achieve confidence and possibly behavioral therapy might help to desensitize his extreme reaction to this scary new feeling.

I hope his courage increases as he senses increased strength in his body/abilities. Until then, you can tell him from me that I said I was scared too, but I had to keep trying.

I'm afraid I haven't been much help, other than to relate what I experienced....but I'll be praying that he overcomes his fears in good time.

[ParaforGod]

Hi and Im sorry to hear about your sons Paralyse. Before my accident I worked at our health dept. for nearly 20 yrs. and some of my patients had downs.With the children I had to do vision and hearing test. I found the children were afraid of the machines especially the hearing because of the noise, the beats it made. I would turn the machine up and let them hear the beeps. They still seemed to be afraid so I then left it up so they could hear the beeps but with the headphones on me. When they saw it wasn't going to hurt they did it. The point Im trying to make is can you demonstrate by getting in his chair and maybe make a motion to fall over with your hands on your feet and show him while buckled up he won't fall out. Then move the chair around everway you can so he see's you not fall out. I don't know where you live or if were your son went to rehab if there was alot of children his age. Here in the states in Atlanta, GA is a place called Shephard Center and its a great place for rehab and they have children of all ages. Maybe if he could be around other children who are in wheelchairs and saw them move in their chairs he wouldn't be afraid. If these are not a choice maybe you could check into special Olympics about other children in wheelchairs. Sorry not to be much help. You will be in my prayers.

[Big Valley]

After you fall a few times you realize it doesn't hurt and you get over it. Just keep pushing him to try and practice.