Saturday, January 27, 2007

California Dreamin’

We were sitting in the waiting room at the wheelchair vendor, Dear Son, his Dad and I. They had taken Dear Son’s new wheelchair to make a few alterations to make it easier for me. We had been waiting over an hour when the young woman walked out of the back room and over to the receptionist. She walked by us and I hadn’t paid that much attention until Dear Son started getting very loud and restless. He was vocalizing quite a bit, at the top of his lungs, and I admit I was quite surprised. He’s normally not very loud when we are out. He’s been quite happy lately, ever since his birthday and Christmas parties. His physical abilities remain unchanged, he can’t weight bear, he can’t roll over, he can’t swallow but his, ahem, hormones seemed to be just fine.

It took me a minute before I realized that the reason for his vocalizations had to do with the young lady that had just walked by. Dad was trying to quiet him down when I mentioned that I thought he liked that young girl. Dad was not sure and dismissed that idea; Dear Son however, gave me a quick glance, dropping his head and smiling so I knew I was right on the money. I explained to Dad that Dear Son likes to go out in the hallway at school and watch the beautiful high school girls. He especially likes it when they take him out into the hallway, when they are changing classes, so he can watch. That’s what his teacher tells me.

The young woman left the room and he soon settled down. She hadn’t paid any attention to him however it didn’t seem to matter. He was doing what other teenage boys do, doing anything they can to get the attention of a beautiful girl. When I explained to the receptionist that he liked “that” girl, I found out “that girl” happened to be her daughter. She laughed and said she would let her know.

We waited some more and Dear Son remained bored. The waiting room was filled with wheelchairs of every size, shape and very little color. There were at least fifty different kinds of chairs in there, mostly pediatric wheelchairs and nearly all of them black. There were standers and walkers in there too. Some were so small, that I couldn’t help but feel sad for those little children. I know that when Dear Son got his first walker, he was thrilled, because it meant freedom, but it never really worked for him since his arms and hands didn’t work and he was never able to hold onto the walker. Still, I couldn’t help but feel bad, since I would much prefer that all children could walk on their own, and not have to use these wheelchairs.

We were waiting quietly when the repair man came zooming by us, testing a pediatric power wheelchair he was working on. He was going fast, and quickly exited the large automatic door. Dear Son perked up in his wheelchair and tried to strain his neck to see where he might be going. He was laughing and carrying on much to Dad’s dismay. I explained to him that many years ago at school, there was a computer software program that Dear Son liked with a character called, “Speedy”. Speedy drove a red power wheelchair and got into all kinds of situations. Dear Son operated the program with a head pointer. Dear Son smiled when I mentioned it.

I thought for a minute and then said I would ask if Dear Son could try a power wheelchair. Dad thought it was a waste of time but I thought it might be fun for Dear Son to wheel around in one, just to try it out. After all, he was a teenage boy and what do teenage boys like better than trying out a new set of wheels. My mind quickly raced to the image of a young man at a new car showroom, dreaming about a new sports car, and taking it for a test drive, knowing full well, he couldn’t afford it. It was that image, when I decided Dear Son needed to take a test drive.

We knew a long time ago, that a power chair was never really a choice for Dear Son, for many reasons that I won’t explain here. But we had an opportunity today, to have some fun.

The repair man entered the storefront again and stopped right in front of Dear Son. I asked if we might be able to try out one of the power chairs. He was going on break and offered to let us use the chair for fifteen minutes. I lifted Dear Son into the chair and we were soon in motion. His hands and arms do not work but I placed his hand on the joystick anyway and moved it with my hand over his as I walked beside him. Dear Son loved it. We had a lot of fun driving around the show room, which was empty. I told him that if he had one of these chairs I would never catch him. We horsed around some more and killed some time. Soon our fifteen minutes was up and Dear Son was totally exhausted and quickly fell asleep.

As I sat in the showroom, I thought about Dear Son and how much he enjoyed the afternoon. I thought about what it was to be a teenage boy while he slept. Sometimes, when you are fifteen, a great day is looking at the beautiful girls, taking a new set of wheels for a spin, and then going home and dreaming of what might have been.


Christina said...

Hi Dream Mom,
I really enjoy your blog. Your postings on the Ashley treatment have all been very interesting to me. Something that I find especially noteworthy is the language that you use to talk about Dear Son versus the language that Ashley's family uses to discuss her on their website. For example, I can never imagine you referring to Dear Son as a "pillow angel". In this post you indicate clearly how you are aware and respectful of the changes he is undergoing as he becomes a young man- noticing attractive women and such. On Ashley's parent's webpage they make statements such as "Ashley has all of a baby’s needs, including being entertained and engaged". They obviously see their daughter as nothing more than an (overgrown) infant, and clearly this is what has made it possible for them to allow the surgery. Do you think that this is because Dear Son is at a higher level of functioning/is more interactive than Ashley or is there some other factor involved that has kept you from infantilizing Dear Son?
Please keep up the great writing. I'm sorry I missed seeing you on CNN.

Dream Mom said...

Hi Christina,

Thank you for such nice comments. I can not imagine calling Dear Son a "pillow angel", I guess since he's a boy and it doesn't make sense.

One thing I never wrote about was Dear Son's transition from a child to a teenager. As he grew taller and went through puberty, it becomes almost impossible to think of him as an infant simply due to his size; he is nearly six feet tall. I can also remember early last year, being shocked looking at Dear Son in the ER one day, thinking that he was no longer a disabled child, but a disabled adult. Disabled kids are cute and you feel for them, disabled adults, are well, disabled adults. That was a very scary thought for me since it brought on a whole new set of issues that I wasn't sure I was prepared to deal with. I mean, you change a child's diapers, but changing a man's diapers, is well, different. I am speaking very frankly here but trying to describe how frightening it can be as a parent. I take things one day at a time and in the end, it seems to work out. There were about three years though, from say 11 to 14, where it was a bit scary for me as a mother. In many ways, I wondered if her parents had difficulty in viewing their daughter as an adult woman versus an adult child.

I also find it interesting that many people think that Dear Son is higher functioning than Ashley, when in fact, I am not sure he is, and may be much lower. When "I" looked at the pictures of Ashley smiling I assumed she was the same as Dear Son or higher functioning, responding to music. If she does indeed enjoy opera, I would assume that is higher functioning. Also, she has use of her hands/arms where Dear Son has none. The parents indicated in their blog that she flaps her arms and hands to music. I think most people think Dear Son is higher functioning, because of the way I talk about him.

I should also mention, that my Dear Son still sleeps with not only his Bedtime Barney but his Microsoft Barney (the talking one). Not only does he sleep with them, but he still loves them. Clearly, that is not the behavior of a teenager, but I don't talk about that. When you raise these children, you find that they have many abilities that are both infantile and some that are not. I credit the school system with helping me recognize many of his behaviors as that of an "appropriate" adult or teenager and helping me see the transition to adulthood.

Dear Son's last psychological test, two years ago, indicated all of his functioning at a one year old level. If I were to look at those when he was Ashley's age, I am certain they would probably be similar. I don't think tests for these children, including those for Ashley, are all that indicative of their "true" functioning since it's rather difficult to measure what they do know, due to their profound impairments. I also don't put much weight on those tests, meaning, they don't tell me information that is valuable to how I raise him. Instead, those tests are more valuable in terms of his education-what is an appropriate placement at school and what the goals should be for the Individual Education Plan.

That being said, I don't mean to imply that their functioning is all that high either, meaning I know my own Dear Son will never hold a job, can't think logically nor can he reason. He can not process concepts like danger. He might know that something will get a reaction, but he doesn't know why he shouldn't do something.

I would suspect, that if they allow Ashley to grow, that they would treat her differently; I know I couldn't help but do that as my own Dear Son grew. I also have seen many of the children in Dear Son's class go through puberty and blossom. Their IQ may be low, but they still grow and mature, just not as fast or like regular teenagers. Their hormones still work though so that doesn't stop because they are disabled.

And finally, my goal as a mother is to make Dear Son feel good about himself. I think that's critical to his self esteem. There are a lot of problems in the world because people don't have a good sense of self and are not secure. I work hard to help Dear Son feel good about who he is, to treat him like a man so he knows what it's like, and to highlight his abilities versus his disabilities.

Finally, as a mother, I just try to do the best job I can and accept my Dear Son for the boy he is and the man he will become. I also pray every night, that I have the physical and the psychological strength to get me through whatever challenges I face.

Danielle said...

I love the last lines about looking at girls and a new set of wheels. Great imagery!

Anne K. said...

DM, you comment about being dedicated to making your son feel good about himself is so wonderful. I have learned so much by reading your posts and comments. What a wonderful observation about his delight in seeing pretty girls - an insight that brings his humanity into sharp focus for the rest of us. Thank you!

Stacey said...

I guess both good days and bad days are both blessings, but thank God for the good days.

Michelle said...

I find that the perception of parenting a child with a disability that the outside world "sees" and has preconceptions about is vastly different than the reality of actually parenting her. Like you, I work hard to give her self esteem. And I deal with the little odd things (like still loving Barney, although we have now moved on to spongebob) as the emotionally supportive things they are. Barney is where DS is, it is where my child was until very recently. Honestly, the whole Barney is not cool thing is not cool in and of itself. Too bad the whole world cant know that kind of love and affection and utter devotion. ;)
I respect you so much for always speaking of DS as though he were reading right along with you. It is for me a matter of being respectful of my child. I want her to be seen for the PERSON she is, not the sum of her (dis)abilities. I also hear you on the evaluations and measurements that are so oddly necessary and so incredibly ridiculous. A nonverbal child will never meet the criteria to be labeled "normal" by those tests. But the tests cant measure the depth of love and true humanity of who they are. Sometimes I think we parents are in a secret club, where we wink knowingly at one another, knowing the world sees something completely different than what WE see. I see DS, through your eyes. And I'm winking.

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