Friday, October 31, 2008

Dance Like No One is Watching…When a Disabled Teenager Comes of Age


The school van drove up into our driveway. Inside the van was Dear Son, his classmate Jen, his medical assistant and his teacher. They had stopped by to take pictures of each child in front of their home for a school project. I happened to see them and came out to the van.

Dear Son was sitting inside the van, slumped over in his wheelchair, in the far back of the van, near the rear window; his classmate sat in front of him. Jen was his favorite classmate for some time now, as they have attended school together for several years. A few years back, they rode the school bus together and used to flirt all the way home. Although Dear Son had no language, they would make faces at each other and laugh. His classmate, a darling young lady, has difficulty walking but can talk and walk, although pigeon toed.

On this particular day, sitting in the van, I saw Dear Son differently, not as my own Dear Son but as a disabled teenage man. Perhaps it was the image of the two of them inside, as opposed to a lot of other children on the bus. Nonetheless, it was different. Over the years, I made a point of never photographing Dear Son in his wheelchair, because I wanted people to see the person first and not his disability. Once he turned thirteen and got much larger, I had fewer options and will now take pictures of him in his wheelchair. Sitting in the van in the wheelchair, he looked disabled, an image that was almost startling to me. They opened the door, lowered the ramp and pushed Dear Son out of the van. They asked if they could take a picture of us, since I was standing there. I obliged. I asked if they wanted to come in however they had other pictures to take and were soon on their way.

So it was unusual when I received the e-mail from Dear Son’s teacher. The e-mail contained the photo of Dear Son and I, and along with it, a note from his teacher saying that Dear Son was having a great week in school and that they were working on dancing. The assignment was that the students had to ask one of their teachers to dance (they have a teacher and several aides in the classroom) and then the teachers would dance with them. She said that Dear Son was “always reluctant” to ask anyone (via his communication switch) however they continued to prompt him until he finally did it. Once they said yes, he enjoyed himself. She said they grabbed his hands and moved to the music.

The e-mail bothered me quite a bit. It was not like Dear Son to be reluctant to do anything in social situations. He is quite the extrovert, unlike both his mother and his father. I worried that perhaps Dear Son’s reluctance was because he felt bad about being disabled. Dear Son can be a bit unusual sometimes, in social situations. Many years ago, I took him to a restaurant for dinner and he refused to eat because he didn’t want anyone to see him being fed. He did the same thing at the park a few years back, when I bought him some ice cream. He refused to eat it in front of kids his age but gobbled it right down in the privacy of the back seat of our car, when we were out of view from the other kids.

When he went to bed last night, I had a conversation with him about dancing. I told him any girl would be lucky to dance with him. I said that I had a little secret to share with him. I said the girls are worried about not being picked to dance and boys worry about the girls saying no. I said any girl would be excited to be asked to dance with a handsome man and that they wouldn’t turn him down. I wasn’t sure if he believed me, but I tried to get him to feel better. This year at school, they are working hard with the kids and doing more “adult” things in the classroom, things that their peers would be doing. Dancing is one of them.

I spoke with his teacher this morning about my concerns. She had contacted me regarding an issue with our new feeding pump. She stated that she thought Dear Son felt bad that he was disabled; she reasoned that he felt the teachers would have expectations that he would dance on his feet and twirl them around and he couldn’t do any of that.

The fact of the matter is that Dear Son has been unable to weight bear for four years now. His torso falls to the side in his large wheelchair. His arms/hands have little or no functional movement. His large fingers look swollen more often than not and all of his fingers are double jointed. If you are not careful, you almost feel as if you could dislocate or break them right off. They have no tone. To make matters worse, none of his peers even look at him in the wheelchair when we are out on our walks.

His teacher went on to say that, when the teachers said yes and grabbed his hands, he seemed relieved that they understood he could not dance the same as the other kids, and that it was o.k. She said that, “once he holds the teacher’s hands and he starts dancing, he gets a great smile on his face and his hands start moving! He’ll pull them a little closer or moves their arms side to side…it’s really awesome!”

I’ve worked hard all his life to make Dear Son feel good about who is he. I think that good self esteem and good self worth are the best gift you can give a child. I am pleased that he is enjoying himself and hope that he continues to dance. It is my wish that whatever he does, he looks beyond his physical abilities/disabilities and be proud of who he is. There is a beautiful saying that starts like this…”May you sing like no one is listening, dance like no one is watching…” Maybe we should stop right there. Just “dance like no one is watching.”

Note: Dear Son is sixteen years old and suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes infantile spasms, dystonia and severe mental retardation.

Thursday, October 30, 2008

Cowboy Wiggles!



Happy Halloween! This is Dear Son's cat Wiggles. We decided to dress him up for Halloween. This made Dear Son laugh since Wiggles does not like to get dressed up and wants to take off the hat as soon as possible. Ironically, he doesn't seem to mind wearing the bandana.
I also took pictures of Dear Son at the clubhouse of our apartment complex. The pictures aren't very good since Dear Son was extremely tired that day.


Finally, here are some pictures of Dear Son from Halloween past. I have posted them before but for new readers, you can click here.

Sunday, October 26, 2008

Zen Swimming


We had talked about swimming for some time. Dear Son was in summer school and they would swim two days of the week. Swim days were his favorite and everyone who knew Dear Son knew exactly how much he loved swimming. The bus driver would tell me how Dear Son would stay in the water until the very last minute. He was the first one in the water and the last one out. Oh, how I wished Dear Son could tell me that.

They had “Parent Visitation” at the pool however I was not able to attend that day because I was working. One day after school, Dear Son and I were talking and I suggested that I’d like to come to the pool, to see him swim. His eyes lit up and a big smile came across his face. I decided to call his teacher right then, to ask permission, as a courtesy. Dear Son listened as I made the call. He was so happy.

We talked about the day I would be visiting the pool. That morning Dear Son was so excited. The day was as hot as could be. I arrived at the pool and there seemed to be a million kids there. There were wheelchairs there, although not nearly as many as in years past. As I searched for Dear Son, one of the aides in the classroom signaled to me across the pool, pointing towards someone, which I later learned was Dear Son.

First I saw his teacher, then one of the aides and finally the aide that was holding Dear Son. Dear Son, with his tanned face to the sun, lie in his arms, floating on the water, oblivious to the fact that I was there. I tried talking to him but he was “in the zone.” He didn’t blink or acknowledge me in any way. It was quite disappointing. He had no idea I was there.

That is sometimes the case with these kids. Your experience with them is never quite what you hoped it would be. In the past, when I would visit Dear Son at the pool, he would be smiling ear to ear the minute I arrived. But today, he just lie there, totally relaxed. When he got home that evening, I told him I came to visit him at the pool. He was just as excited. I teased him that he never even saw me and he just smiled. We looked up at the fake Olympic gold medal that hung on his IV pole, the one they had given him at school. Dear Son was so proud of that medal. He couldn’t have been more proud than if he had really won it. I thought of the irony of it all. We talked some more. I told him that I was very proud of him and that I couldn’t swim at all. I told him I was amazed that he was in the deep water. I thought about the fact that it wasn’t very often that he was better than anyone at these kinds of things but the swimming, well, that was his forte. As the summer progressed, Dear Son continued to have seizures, which we later learned was occurring almost twenty four hours a day. We didn’t learn that until the week after summer school ended. I imagined then that the swimming was much more than floating in the pool. Perhaps that was his way to combat what was occurring in his body. And the fact that he could even get to such a place, of total relaxation, had to good for him. I never in a million years thought that he could relax to that degree, almost as if he were meditating and be so relaxed.

Summer is over now, but I still left his Olympic Gold Medal on the IV pole. And for that, I am so proud of him. To see him totally relaxed and enjoying something so much, is the best part of being his mother and the best part of our summer. Move over Michael Phelps, you have nothing on Dear Son, at least in my heart.

Tuesday, October 21, 2008

This is Not Your Father's Hospital Bed- Part II

When Dear Son was two years old, we built our first new house. At that time, we knew of Dear Son's disabilities however we didn't have a good idea of what modifications we should make when building our new home. The home had an open floor plan, which I knew would be good, but trying to plan ten years or twenty years ahead, was difficult. We settled on a few things, making all doors in the house 36 inches wide, converting a first floor laundry room into a changing room/toy room for Dear Son and the biggest change of all had to do with the foundation. The builder was able to raise the foundation 8 inches which allowed the sidewalk to our front door, look normal and therefore there was only one step with which to maneuver the wheelchair. To this day, no one who drives down the street, would have any idea that our home was wheelchair friendly or handicapped accessible, which is exactly the point of "universal design." Since that time, I have learned that many of the changes that are made for the handicapped, are often enjoyed by everyone.

You may recall a few years back, when Dear Son required a hospital bed, that I was very reluctant. The last thing I wanted in my home was a giant hospital bed. It's bad enough to be in a hospital but to have one in our home, was well, a giant eyesore. I took the bed apart, painted it, created a faux headboard from a bamboo blind and ended up with a modern looking bed. A good solution nonetheless, but not great. That is, until I saw this bed.




This bed looks like a beautiful bed, but unless you know the secret, you might just assume that it's solid wood good looks are something you'd like in your own bedroom. After all, who wouldn't like a beautiful, hand crafted, solid wood bed. There is something especially lovely about a handmade bed. And it's no wonder that having a solid headboard on a bed is good feng shui. But what if I told you, that this is no ordinary bed. This bed, fits right over a hospital bed. And who wouldn't love that. And that is the beauty of "universal design". This bed not only fits over a standard hospital bed but would be lovely in any bedroom.



This bed is the creation of Gary Owens. He created the bed when his own wife became ill. I can't imagine the good energy that would create having such a beautiful bed in what could have been an ordinary hospital bed. The best thing about these beds, is they are not only pretty, but functional. I also think there is something special about a gift that is hand made.




Gary contacted me some time ago and asked me what I thought of his beds. I told him they were gorgeous. I said that they were so beautiful that he should not limit himself to marketing the beds to Durable Medical Equipment (DME) providers, but also to high end retailers. At the present time, I am not aware of any other bed that fits over hospital beds. In addition, while most DME providers do offer higher end hospital beds, they are expensive and most insurance companies won't pay for them. If you pay out of pocket for them, they still aren't a design that is very exciting and the problem is that once the hospital bed is no longer needed, you have just paid for a bed you'll never use again. And that's the beauty of tendercarebeds.com When you buy a Tendercare Bed, the bed fits over a standard hospital bed AND when you no longer need a hospital bed, you still have a lovely bed!



I can only hope that these new beds catch on. How lovely would it be to walk into a new children's hospital and see a lovely bed like this. More often than not, they invest in large screen televisions. That's fine, but when you spend a lot of time in the hospital, you want a hospital room that looks like home and you want your home to look like a home and not a hospital. I would imagine in this case, you could also have a decorative painter create a scene on this bed or add a child's name to it. And with this bed, you can have your cake and eat it too.

But this bed is not limited to any one group. I can only imagine that as the baby boomers age, and more hospital beds make their way into the home, that more people will want more than the just the standard hospital bed. I can see this business growing to include nightstands and matching dressers. Move over Pottery Barn and Nieman Marcus, Tendercare Beds is here to stay.

Wednesday, October 08, 2008

What I Know For Sure About Having a Special Needs Child

The note from high school was interesting. Dear Son was learning about plants and his teacher had written me a note to tell me how much Dear Son was enjoying learning about them. They had taken a field trip to a garden, where they got to view many plants and herbs and he loved it. She wrote, “Dear Son is so awesome to have in class-the best sense of humor and he is so eager to explore."

It was only a few weeks later, when I spoke to his teacher on the phone for the parent teacher conference, and she indicated that he was enjoying watering the plants. She said it took a lot of effort for him to do this. I wasn’t clear on how they were doing this since Dear Son doesn’t have much functional use of his hands or his arms. She stated that they used a squeeze bottle and he was responsible for attempting to squeeze the bottle to start the watering and to stop the watering. Once I made it clear to them that he was left handed, it went much better. She said they had just assumed he was right handed.

If I were to imagine sixteen years ago, that Dear Son would be such a mature young man with varied interests, I doubt I could fully comprehend what that would mean. At that time, I was worried about all of things he wouldn’t be able to do but secretly hoping he would do all of them. That’s why it was interesting when I received an e-mail from a woman today, whose infant son was just diagnosed with an ARX mutation. She had two other children, prior to this one. She said she would have been fine not knowing.

I wonder what to say when I receive e-mails like this. I want to be sensitive and kind and try to imagine where they are at in the journey. On the other hand, it’s so difficult to write them because my heart is filled with such joy and love for Dear Son, that it’s hard for me to write as if a “special needs” is something less desirable, because I no longer feel that way. I feel that Dear Son is a perfect child.

I no longer see what he isn’t but what he is and has become. I love who he is and who he has become. I have learned so much from him, living my life and seeing the world from his perspective, that I no longer think it’s a bad thing to have a special needs child. In his imperfection, I found perfection. I can no longer think of my child as being anything other than perfect. His physical and mental disabilities, that were once in the forefront, are now in the background. His soul, his personality and his honesty beam so bright that I forget about the other stuff. He lives every day from the heart. He lives in the moment. He is happy and he has friends. Of all of the things that give me pleasure in life, seeing him laugh or seeing him smile is always number one.

Because I love my Dear Son, it doesn’t mean that I don’t wish his life was better or easier. I’d love it if he could walk or tell me when he’s hungry. I’d love to be able to talk to him for a whole day, just twenty four hours would be great. Being able to hear his voice, listening to what he has to say and hearing him tell stories from his point of view would be wonderful. I don’t think other parents can really comprehend what it would be like if their child never spoke to them.

But perfection comes with a cost. I don’t wish for all of the horrible seizures for these little boys. I don’t wish for the hospitalizations, the ER visits, like the one Dear Son had yesterday, or for any of that other stuff. The enormity of caring for a disabled child can be overwhelming, no matter how organized you are. As they grow bigger, it takes more of their energy and more of yours to do the same things you did yesterday.

But if I had to trade all of my yesterdays with Dear Son or all of my tomorrows with him, I’d never do it. Genetics tests are just that, they are information. But what they never reveal is the depth of the joy in caring for a special needs child. I firmly believe that being blessed with a special needs child, is like the universe smiling down on you as a mother. For only those mothers, will be able to see the child for who they are. And that something, is pretty spectacular.

Note: Dear Son is sixteen years old and suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes Infantile Spasms, dystonia and severe mental retardation.
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