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.

Say what???

Maggie is 15, and 15-year-old girls can be mean. Maggie is not immune from this despite all her disabilities and medical issues. Apparently, she was mean to her friend Sierra the other day and really hurt her feelings.

I have written about Sierra before. She is a girl who befriended Maggie – really the first to ever do so. Maggie’s world is limited socially because of her situation. All of her friends were always other special ed kids who had parents with whom I liked to socialize. They were “play dates” way past the age your mom should be picking your friends. The rest of her friends were the adults in her world. Maggie did not have any control over her social life. I knew that and wanted it to be better, but if I tried to control that, I was manipulating it.

Then she met Sierra. I think it was last year that Sierra and the other girls started coming into Maggie’s class. Sierra led the charge and Maggie now has several typically developing friends. That has done wonders for Maggie. She likes pop music because Sierra and the girls like it, she wants to wear certain clothes because Sierra and the girls wear them. All appropriate social stuff for a 15 year old.

Maggie used her communication device to “diss” Sierra in speech class the other day. Sierra does have some learning issues and she attends a group speech class with Maggie. Everyone in the class prepares a sentence to share. Maggie uses her communication device and the other students use pen and paper. Then they take turns sharing. As soon as Sierra started speaking, Maggie hit “whatever” on her talker and then “Speak Up, Sierra.” Sierra’s feelings were really hurt.

Maggie is getting better at her communication device and she KNOWS exactly what she is doing. Yes, that is a huge breakthrough, but turning on Sierra is not smart. According to the nurse who was with her it was very clear that Maggie knew what she was doing and was not kidding. Sierra was shocked. Maggie used her talker to apologize, and Sierra forgave her.
Maggie is learning more and more the power of communication, not just positive, but negative. Of course that is important because as the saying goes “words hurt”, even if they are coming out of a synthesized machine. She may be exploring that concept and Sierra is a trusted place to practice, but Maggie has to be careful she does not lose the friend that changed her world.

The thing Maggie has to learn, and probably already knows, is if she wants people in her world she has to be MORE welcoming and nicer than others are. Her wheelchair, trach, suction machine, communication device, feeding tube, attendant and just the amount of space she requires in a room keeps people at bay. She will have to compensate for that with kindness to make people feel comfortable. Maggie is very good at using her smile to put people at ease and now she has to learn to use communication the same way.

It is just teenage, middle school drama, with a techno-twist. Maybe they can do a sequal of "Mean Girls" with a special ed, augmentative communication theme. Do you think Hollywood is ready for that?

family and FAMILY

Everybody defines family differently. In my world family has several meanings. There is my (lower case) family, my relatives, which includes several tiers and my FAMILY, which are the people I will do anything for and I know will do anything for me. Most of my family are included in my FAMILY, but other people find their way into that second group as well.

The tiers of the (lower case) family extend out from closest/immediate to distant relatives. As our circumstances change different people move in and out of different tiers. When you’re a kid that first tier is you parents and siblings. When you get married and have kids of your own, they move into the first tier and the siblings each form their own sets of tiers with their own immediate families. For those who don’t marry and have kids, the first tier might remain parents and siblings or might change completely to friends and co-workers.

For me the first tier includes my husband, our children and our parents. The next tier is our siblings and nieces and nephews and the third tier is generally other people we’re related to, aunts uncles cousins etc. That third group is enormous for us. Those delineations are not hard and fast, just general descriptions. Obviously the interaction is less among those in the furthest tiers. Each of them have their own responsibilities in their own immediate families. It is pleasant to hear from them and catch up on things, but they are generally not part of my everyday life.

Then there is my FAMILY – the people I count on and those who count on me. That includes my immediate family and siblings and to some extent nieces and nephews. I say "to some extent" because they are growing up, moving away and changing their lives. They will develop their own closer circles, relegating me to a more distant tier. That's the way it's supposed to work.I say "to some extent" because they are growing up, moving away and changing their lives. They will develop their own closer circles, relegating me to a more distant tier. That's the way it's supposed to work. It also includes friends who have been there for me in hard times. There are some people out there that I KNOW will pick me up if I fall. That is comforting. It comes with responsibility, though. I have to be prepared to be there for them too. I am and I will.

Because everyone has different people in their FAMILY they might not understand why “person x” is in mine. That’s ok. I don’t have to explain it and probably couldn’t if I wanted to. Besides, if they’re asking why, I know “person x” cannot rely on them and perhaps needs me even more.

No matter how big or small your family is, everybody needs someone in their FAMILY.

Coffee Clatch

I do a lot of volunteer work. It is good for me and good for the community. Of course, it is hard to measure the contribution to the community when you are sitting on the board of a nonprofit and attending numerous meetings. Meetings and fundraising are absolutely necessary so those on the front lines can do their work; but the contribution does not feel very real, it’s intangible. Yesterday I was involved in a simple “hands on” event that meant a lot to the people involved. We simply provided food and a little respite for families of pediatric patients in UCSF Children’s hospital. The families were very appreciative of Coffee, pastries, fruit and the opportunity to mingle with other families. Witnessing the effect and appreciation first hand made a big difference for me, too.

The Family Advisory Council at UCSF Children’s Hospital sponsored this event. I have been part of this group for a couple of years. The Council is comprised of several family members like me who have experience with UCSF Children’s hospital. Most of the parents on this board have children who are “frequent flyers” at the hospital on an ongoing basis or had extended stays in the past that are now resolved. A couple of them have lost their children and a couple of them were labor and delivery patients who had lengthy hospitalizations themselves. In addition to the family members, there are hospital staff members on the council from most of the disciplines serving the children on a regular basis. Not the individual services/specialties, like Pulmonology or neurosurgery, but nurses, residents, social workers and child life specialists. It is a good representative sampling of the people running around the pediatric floors on any given day.

UCSF Children’s Hospital is a 180-bed hospital located on the 6th, 7th and 15th floors of the UCSF Medical Center. It is an amazing place with the best care possible, but it is overwhelming for parents, especially the physical layout. In order to get to the cafeteria on the second floor, you have to be able to comfortably leave your child’s bedside for 20 minutes or so, which many parents cannot or will not do. (I’m one of them) Once you get there, you are in an enormous place designed to serve the entire medical center. You can feel very alone is a room full of people.

A new freestanding Children’s Hospital is in the works, but it won’t be completed until 2013 or 2014. By the time it’s done, Maggie will no longer be a pediatric patient. A lot of the family issues will be addressed by the free standing dedicated pediatric center. Everything in the new hospital will focus on children and the unique issues presented by pediatric patients. The Family Advisory council has been focusing a lot of its time providing input on the design of the new hospital to meet the real needs of families of patients. That has been interesting, but it too is intangible. Will I even notice if the parents seating is within reach and sightline of the patient as I suggested? No, because 1) Maggie will never use these rooms and 2) if we were in there and it wasn’t set up that way I would just grumble and move it around as most parents would. (My point to the designers: Parents do not need their own “privacy zone” in the pediatric hospital room. They are there simply to care for their child.)

Providing that little break yesterday, right on the 6th floor, gave families the ability to grab a quick snack and we even delivered to the rooms of the patients whose families could not leave the bedside. There were at least 30 families in and out of the room and many others served in their rooms. It was also an opportunity for these families to mingle. Not everyone wanted to, which is fine, but for some it was the chance to get out of the room and commiserate with other parents in a similar situation.

I watched one little foursome chatting with each other. It was an unlikely group from my purely observational viewpoint. A white man in his mid 50’s was chatting with a Chinese woman who had some difficulty with English, a very young African American mother and another white 40ish woman with a US NAVY shirt on. I have no idea what the stories of each of these people were, but I bet there are not too many situations that would find them exchanging pleasantries. Having a sick child or grandchild is definitely an equal opportunity situation, every parent can relate to every other parent on the most basic level. Despite the differences in their age and appearance, each had the exhausted almost vacant look that I know I get every time Maggie is admitted to the hospital. As I watched them chat, I notices each looked just a little less vacant after spending a little time together. That was a very tangible reward for me.

Times being what they are, funding for this event was very difficult to obtain. The hospital is strapped like everywhere else. Becky, the Child life specialist who organized this, told me she spent $350 on the food, but it is unlikely she will get that money again. I have to believe that we can get bagels, donuts, fruit and coffee donated once a month. Even donors like to know their contributions are going to tangible things. Caring for families with sick children is very tangible indeed.

So now, it is my mission to hit up the local bagel places and grocery stores for donations to make this event happen at least once a month. It will be good for me and this time I KNOW it will be good for the community.

Special Olympics

Maggie at Special Olympics May 2008

I was disappointed to hear President Obama joke about his low bowling score with a Special Olympics reference. Very disappointed. Here is a president seemingly so tuned in to groups of everyday American often forgotten or overlooked. That little slip, and it was really nothing more than that, reveals that his fine-tuning does not include the disabled.

B U M M E R.

Disabled individuals and their families are often isolated because of their situation and excluded from everyday activities. This is not out of unkindness or malice; instead, it is the reality of the disability not working with the activity. The Special Olympics provides recreation, competition, inclusion, fun, camaraderie and entertainment for thousands and thousands of disabled individuals all over the world. Without Special Olympics, these individuals would continue to be excluded. To quote their own website

Dignity, acceptance, and a chance to reach one’s potential – these are human rights worth promoting for everyone. Since 1968, Special Olympics has been bringing one message to the world: people with intellectual disabilities can and will succeed if given the opportunity. (http://www.specialolympics.org/What_We_Do.aspx)

Can the children compete with athletes who are not disabled? Generally, no. Are there exceptions to that? Of course.

Power wheelchair race

But here is a newsflash: that is not the point. The point is to provide healthy competition and fun in an environment that works in the disabled world, not in the typical world. By doing this the Special Olympics raises awareness and opens doors for acceptance. They are, in their own words, “Creating a World of Acceptance.” The success of Special Olympics is legendary.

Those making fun or making jokes about the Special Olympics have not opened their heart and minds to the realities of the world of the disabled, the human dignity involved or the wonders of the Special Olympics. Now, it appears the President is among them. Bummer again.

President Obama has already apologized for his comment. I accept that apology on behalf of my daughter and myself. I hope that this slip will create a dialog that will remind everyone of the human beings involved in Special Olympics. Those human beings, both the athletes and the staff, are working as hard as they can to make a difference in the world in their own ways. That should be applauded, not ridiculed.

Take a moment today to consider those involved in Special Olympics. Contribute something if you can. It doesn’t have to be money. It can be time and, probably most important of all, it can be respect.

Stop making fun of it and you just might learn something.

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!