Power Soccer

Maggie's wheelchair was fixed and she attended the power wheelchair soccer clinic yesterday. There were several players in attendance, and unlike Maggie, everyone of them was very proficient at driving their power chairs. The players and several coaches, were zipping hither and yon through the drills and eventually the game itself.

Maggie has very rudimentary power chair skills. With a ton of prompting she can go forward, left and right. She cannot go backwards, though and in order to make the chair do that one has to physically lift her head off the controls and reset the chair. In addition she still needs frequent suctioning. Accordingly, Maggie needs someone right next to her when she’s using the power chair.

There were a number of volunteers there and her PT Barb did it for a while, but then it was my turn. It was stressful. The other drivers were very adept at avoiding me, but keeping track of all the different moving vehicles as well as Maggie’s navigation and medical needs was hard work.

Maggie played goalie for a few minutes. She shut them out of course. (Ok, she was only in for a few minutes and there were no shots). The other kids in chairs rallied ‘round her to help when the opposing team got close and one of them stole the ball and headed down to the other goal and scored.

Maggie has to concentrate really hard to work that chair and the sensory overload made that difficult. After a while it was clear that she had enough; you can see Maggie wilt after expending a lot of physical or mental energy, and this required both. She lasted longer than I thought she would and she hit the wall about 10 minutes after I did. Everyone was a wheelchair user, but Maggie was the most complicated, as usual. That was a little tough for me, I forget that even among her “peers” she stands out for the level of her disability and medical stuff.

Her trach care, vision issues and lack of stamina put her behind the eight ball, but I doubt anyone else had more fun than she did.

Maggie using her soccer basket as a foot rest.

Soccer Mom

Maggie is playing soccer on Sunday. There is a power wheelchair soccer clinic at Kezar Pavilion. If anyone reading this uses a power chair, join in. It is free and open to all power chair users. Maggie is a rookie, but I expect there will be many who actually know what they are doing.

There is one problem, though. The power chair Maggie uses is on the fritz. We are hoping that it is a battery issue and can be repaired.

Apparently they knew about the wheelchair issue a week or so ago, but due to a communication breakdown no one ever came to pick it up to repair it. I received a rather sheepish message from her Occupational therapist (OT) the other day. He explained that the chair was still at school and they did not have any way to get it to the Wheelchair shop. He wondered if there was any way I could transport it because I have the wheelchair van. As soon as I got the message, I called him back and assured his that was no problem.

It makes me laugh. Maggie gets services from every conceivable public agency. Every service is free of charge. We have a ton of expenses because of Maggie, but we do not have to pay for the services. They NEVER ask me to do anything. I offer when I remember, but generally, they take care of everything. My boys went to Catholic school, for which we paid considerable tuition. Parents understood that part of the deal involved parent involvement and volunteer hours. I was very active in both the grammar and high school parents associations and happily took part in several volunteer projects. Hence, I was a regular volunteer at the school of my two able bodied, typical developing sons and very rarely volunteer at Maggie’s school or any of the agencies. Strange. Now, if I'm gong to be a soccer mom, I have to get involved. I'm not bringing joice boxes, I'm bringing a 200lb power chair.

Of course, the agencies are not really set up for it and the school does not really reach out to the parents of the most involved kids. That is not an excuse, merely an explanation. When I arrived at school to pick up the chair I assured Cliff, the OT, and all the other adults in the room to hesitate to ask me to do anything. After 14 years at Catholic schools, I am well trained in volunteering.

Yesterday I loaded up the power chair and drove it downtown to the repair shop. I have to head back down there today and hope it is fixed. Maggie might have a future in power wheelchair soccer. Of course, she is still learning the use of the chair so the speed is set very low.

That’s ok; she can do the super slo-mo replays.

Have a great weekend.

Using your Head

Maggie has been working on driving a power chair for several years. This is an incredibly difficult thing to master, especially for one with limited motor control. We do not own a power chair but there is one at school. It belonged to a student who passed away some years ago. Repairs and updates to this chair are tricky because they cannot be attributed to a single student. Through the dedication of the therapists, their ingenuity and their endless supply of duct tape, the chair continues to be an asset for Maggie.

Determining how to best maneuver the chair is a huge step. I really hoped Maggie could use a joystick on the arm of the chair, but that was not to be. She gets the concept, but cannot sustain the control over her hand in one position. The movement that way was very start and stop. Roselle and Cliff, two different types of therapists worked together with Maggie and the chair and found the best way for Maggie to access the power of the chair. She uses her head and switches on her tray. Leaning with her left temple makes the chair go and taking the pressure off make it stop. Turning right and left is accomplished by waving or sliding or placing her hands over “proximity” switches mounted underneath her tray. They are called proximity switches because all you have to do is get near them to activate them. They are placed on the left and right or her tray so she just moves the arm on the side of her body that she wants to turn. Reverse is beyond our technical or conceptual capabilities at the moment. (I can make the chair reverse, but we do not have Maggie doing that yet)

Maggie has become quite proficient at this. It is slow going, and certainly, some days are better than others are but she gets it. Maggie can do it herself for the most part but also responds to instructions. For example, “Maggie, you’re going to hit that pole, you better turn right.” And she does it – usually. Occasionally she gets and evil grin and just heads for the pole and we have to hit the KILL switch on the back.

The level of trust between Maggie and her therapists is huge. Maggie has never been able to move herself through space. She has had to depend on others to do that. This gives her the power to control some of that herself, but she has to trust the people working with her to overcome the fear of the unknown, and her limited visual capabilities.

I would say it has worked. Maggie can literally drive the chair with her eyes closed. I received this picture of Maggie leading the Chinese New Year parade at school. The pic is grainy, but Maggie is wearing the Lion Head while driving the chair. Roselle is next to her prompting the turns etc.

Maggie is always using her head!