Recently, a fellow physician blogger and I have paired up to write a new Blog Mini-Series! The Mini-Series will run for one week and should be fairly exciting. We are in the process of writing it now and are at the half way point. We need to complete the entire series prior to posting. You may not see much in the way of new posts from me, until this is complete, since I only have so much time. I can't tell you any more than that, since I am sworn to secrecy, but it's been a lot of fun. I wanted to let you know, so you understood why I have been slow to post.
On a different note, Dear Son received a hair cut this weekend, very similar to Britney Spears. I'll see if I can post some pictures in the interim.
Tuesday, February 20, 2007
Saturday, February 17, 2007
A Fishy Story
I was cleaning out the fish tank when it happened. The fish jumped out of the net and onto the carpet. Dear Son was sitting in his rocker watching the whole thing.
The fish were a gift to Dear Son for his ninth birthday, shortly after I divorced. I thought he might like a pet and settled on the fish. We had many outdoor pets, so to speak, the animals that came regularly to our bird feeder. We had Blackie, our red winged black bird that was a frequent visitor. He came to the feeder every morning before Dear Son went to school, then would sit on the top of his swing set in the backyard, every day while he was at school. Once Dear Son came home, he’d fly back over to the bird feeder, while Dear Son watched him from the base of our French door, as he lie on the carpet, his head on a pillow, with the cool summer breezes wafting over him and the sound of the aerator, lulling him to sleep. Of course, it didn’t hurt that our lot backed up to a pond, as the red winged black birds are water loving birds, but I called him Dear Son’s bird nonetheless. Then there were Donald and Dolly, our mallard ducks. They came back to our feeder year after year; even the neighbors called them our ducks, since they only fed at our feeder.
But the fish were our first “official” pets as a family. It was a simple fish tank, something I thought I could take care of. Apparently, I never mastered the filtering system very well because I found the fish tank to be a lot of work. We had several fish, all named of course, but the two favorites were Prince Charles and Princess Diana. They were named as such, because of the castle, that resided in the middle of our fish tank. The one fish, would always be outside the castle; I named her Princess Diana. The other fish, would always hide inside the castle, so I named him Prince Charles, because he was always hiding in there and didn’t want to come out.
Now the problem with the fish, came with cleaning the tank. I chose to remove the fish from the tank for a thorough cleaning. I know it’s not necessary but like I said, I just hadn’t mastered this filtering thing. I moved the first fish successfully from the tank when I attempted to remove the second one. The fish jumped high into the air, out of the net and landed on the carpet. Being squeamish as I am, I screamed at the top of my lungs. It was the kind of scream, that you’d expect when you were watching a horror film or saw someone committing a terrible crime. I even scared myself, it was so loud. I attempted several times to get the fish back into the tank, but the problem was that I would have to touch the fish and this was presenting itself as a major problem. There wasn’t any way that I was going to actually “touch” the fish. Dear Son thought this whole episode was hilarious and he proceeded to rock in his chair laughing as hard as he could until he was nearly crying from the laughter. Every time I thought I had the fish with the net, the fish would flop and I would scream. The louder I screamed, the funnier it was. Of course, I was talking all of the time trying to get the fish back into the tank which only added to his amusement. A curse word or two might have slipped out.
Soon the fish was back in the tank but ended up going into the castle. I later learned he died. Some time later, a second fish died after hiding in the castle. I decided I might want to rename the castle the “funeral parlor” since the fish were dying inside there.
Dear Son never really cared for the fish. I think the fish jumping out of the tank was the most fun he had. After these issues with the fish, I decided to get Dear Son a cat.
Somehow, it’s hard to imagine Dear Son had any disabilities that day. I wonder how the psychological tests measure that. Sometimes, labels don’t tell the whole story. And the whole story is often better than reading just the last page. And a whole lot more fun too.
The fish were a gift to Dear Son for his ninth birthday, shortly after I divorced. I thought he might like a pet and settled on the fish. We had many outdoor pets, so to speak, the animals that came regularly to our bird feeder. We had Blackie, our red winged black bird that was a frequent visitor. He came to the feeder every morning before Dear Son went to school, then would sit on the top of his swing set in the backyard, every day while he was at school. Once Dear Son came home, he’d fly back over to the bird feeder, while Dear Son watched him from the base of our French door, as he lie on the carpet, his head on a pillow, with the cool summer breezes wafting over him and the sound of the aerator, lulling him to sleep. Of course, it didn’t hurt that our lot backed up to a pond, as the red winged black birds are water loving birds, but I called him Dear Son’s bird nonetheless. Then there were Donald and Dolly, our mallard ducks. They came back to our feeder year after year; even the neighbors called them our ducks, since they only fed at our feeder.
But the fish were our first “official” pets as a family. It was a simple fish tank, something I thought I could take care of. Apparently, I never mastered the filtering system very well because I found the fish tank to be a lot of work. We had several fish, all named of course, but the two favorites were Prince Charles and Princess Diana. They were named as such, because of the castle, that resided in the middle of our fish tank. The one fish, would always be outside the castle; I named her Princess Diana. The other fish, would always hide inside the castle, so I named him Prince Charles, because he was always hiding in there and didn’t want to come out.
Now the problem with the fish, came with cleaning the tank. I chose to remove the fish from the tank for a thorough cleaning. I know it’s not necessary but like I said, I just hadn’t mastered this filtering thing. I moved the first fish successfully from the tank when I attempted to remove the second one. The fish jumped high into the air, out of the net and landed on the carpet. Being squeamish as I am, I screamed at the top of my lungs. It was the kind of scream, that you’d expect when you were watching a horror film or saw someone committing a terrible crime. I even scared myself, it was so loud. I attempted several times to get the fish back into the tank, but the problem was that I would have to touch the fish and this was presenting itself as a major problem. There wasn’t any way that I was going to actually “touch” the fish. Dear Son thought this whole episode was hilarious and he proceeded to rock in his chair laughing as hard as he could until he was nearly crying from the laughter. Every time I thought I had the fish with the net, the fish would flop and I would scream. The louder I screamed, the funnier it was. Of course, I was talking all of the time trying to get the fish back into the tank which only added to his amusement. A curse word or two might have slipped out.
Soon the fish was back in the tank but ended up going into the castle. I later learned he died. Some time later, a second fish died after hiding in the castle. I decided I might want to rename the castle the “funeral parlor” since the fish were dying inside there.
Dear Son never really cared for the fish. I think the fish jumping out of the tank was the most fun he had. After these issues with the fish, I decided to get Dear Son a cat.
Somehow, it’s hard to imagine Dear Son had any disabilities that day. I wonder how the psychological tests measure that. Sometimes, labels don’t tell the whole story. And the whole story is often better than reading just the last page. And a whole lot more fun too.
Tuesday, February 13, 2007
The Day in the Sun
The school buses were lined up one after another, so many that I couldn’t even count. It looked like one giant yellow caterpillar against the hot black pavement as the buses meandered around the recreation center. I sat near the pool waiting to see if I could catch a glimpse of Dear Son getting off the bus but there were so many children, that I have to admit, even as his mother, I couldn’t distinguish him from the crowd. The children in the pool were splashing, making it difficult to hear as well. I waited, as child after child got off the bus in their wheelchair, so they could swim.
This was no ordinary day at the pool. This was summer school. Summer school, in this area, consists mainly of swimming every day, along with some other activities, all designed to keep up their skills that they worked on so hard during the school year, so they didn’t lose it for the twelve weeks they were off during the summer.
The short yellow buses were lined up as far as I could see. There were all kinds of wheelchairs for all kinds of kids. There were kids as young as three up through high school. The sight of all of these wheelchairs, made me tear up. Never have I seen so many disabled children, in one spot. I couldn’t help but think that life wasn’t fair for these kids and how they were all on the wrong side of outcomes. Those tiny percentages loomed large here.
The summer school program had many volunteers; college students majoring in special education, make up the bulk of them. There were some older aides as well, that help with the children.
I couldn’t help but think that children with severe disabilities and water don’t mix. After all, it’s difficult to manage these children normally, let alone when they are slippery and wet and can’t help you. But I didn’t have to help today. It was parent visitation day at the pool and I could just relax. Instead, Dear Son had three aides that would get him in the water and take care of him.
Dear Son never like swimming and it may be my fault. I don’t like water however my husband and I made the mistake of taking Dear Son into the hot tub on one of our weekend trips and he loved it. It wasn’t a bad thing, it was just that once he had a taste of that nice hot water, he wanted nothing to do with the cold swimming pool. His dislike for a cold swimming pool continued for many years. Every summer, they take the kids to the pool for summer school and every summer he’d shiver in the pool, his chest sunken in, his bony ribs making waves in his lily white skin and his baggy swimming trunks trying to find some meat on his body to hang onto. That was, until he met Mr. H.
Mr. H and Dear Son went together like peanut butter and jelly. He’d take Dear Son over to the deep area of the pool and let him float, while holding onto him. Dear Son would smile ear to ear, his face beaming in the sun, as if the sun were shining down on him, like a spotlight in the pool. Mr. H had a special spot in the pool, just for him and Dear Son. When he didn’t take Dear Son over to it right away, Dear Son would look at him, look at the spot and then give him a great big smile. It was great to see him so happy.
Soon the time was up in the pool. Mr. H and the two other male aides, lifted Dear Son out of the pool and into the wheelchair, taking him inside to get him dressed for the bus ride home.
I couldn’t help but think, as I saw the hundreds of children wheel out to their little buses, what it must have been like some forty years ago, for children like these. Many were placed into homes, away from the families they were born into, because they were severely disabled and it was too hard to care for them. As the little yellow school buses drove away, I couldn’t help but think of those children who were born in the wrong place and at the wrong time. I wonder if they ever had their day in the sun, with someone like Mr. H, who let them float the afternoon away or if they drowned their sorrows looking out the window at the other children playing in the swimming hole, if they even had a window to look out. I wonder too, if anyone visits them at the home, or if they just forgot about them after they admitted them, and went on about their normal lives. Sometimes, you don’t need to swim with the sharks to be eaten up by them.
This was no ordinary day at the pool. This was summer school. Summer school, in this area, consists mainly of swimming every day, along with some other activities, all designed to keep up their skills that they worked on so hard during the school year, so they didn’t lose it for the twelve weeks they were off during the summer.
The short yellow buses were lined up as far as I could see. There were all kinds of wheelchairs for all kinds of kids. There were kids as young as three up through high school. The sight of all of these wheelchairs, made me tear up. Never have I seen so many disabled children, in one spot. I couldn’t help but think that life wasn’t fair for these kids and how they were all on the wrong side of outcomes. Those tiny percentages loomed large here.
The summer school program had many volunteers; college students majoring in special education, make up the bulk of them. There were some older aides as well, that help with the children.
I couldn’t help but think that children with severe disabilities and water don’t mix. After all, it’s difficult to manage these children normally, let alone when they are slippery and wet and can’t help you. But I didn’t have to help today. It was parent visitation day at the pool and I could just relax. Instead, Dear Son had three aides that would get him in the water and take care of him.
Dear Son never like swimming and it may be my fault. I don’t like water however my husband and I made the mistake of taking Dear Son into the hot tub on one of our weekend trips and he loved it. It wasn’t a bad thing, it was just that once he had a taste of that nice hot water, he wanted nothing to do with the cold swimming pool. His dislike for a cold swimming pool continued for many years. Every summer, they take the kids to the pool for summer school and every summer he’d shiver in the pool, his chest sunken in, his bony ribs making waves in his lily white skin and his baggy swimming trunks trying to find some meat on his body to hang onto. That was, until he met Mr. H.
Mr. H and Dear Son went together like peanut butter and jelly. He’d take Dear Son over to the deep area of the pool and let him float, while holding onto him. Dear Son would smile ear to ear, his face beaming in the sun, as if the sun were shining down on him, like a spotlight in the pool. Mr. H had a special spot in the pool, just for him and Dear Son. When he didn’t take Dear Son over to it right away, Dear Son would look at him, look at the spot and then give him a great big smile. It was great to see him so happy.
Soon the time was up in the pool. Mr. H and the two other male aides, lifted Dear Son out of the pool and into the wheelchair, taking him inside to get him dressed for the bus ride home.
I couldn’t help but think, as I saw the hundreds of children wheel out to their little buses, what it must have been like some forty years ago, for children like these. Many were placed into homes, away from the families they were born into, because they were severely disabled and it was too hard to care for them. As the little yellow school buses drove away, I couldn’t help but think of those children who were born in the wrong place and at the wrong time. I wonder if they ever had their day in the sun, with someone like Mr. H, who let them float the afternoon away or if they drowned their sorrows looking out the window at the other children playing in the swimming hole, if they even had a window to look out. I wonder too, if anyone visits them at the home, or if they just forgot about them after they admitted them, and went on about their normal lives. Sometimes, you don’t need to swim with the sharks to be eaten up by them.
Sunday, February 11, 2007
Dream Mom One Year Anniversary-Then and Now
Blame it on Fat Doctor! She got me started with this whole blogging thing. LOL! I started reading her site and really enjoyed what I read. I found it fascinating. From there, I started clicking on links to other blogs. Since I love children, I found my way over to Neonatal Doc’s site and started reading his as well. Due to my issues with Dear Son, I found myself commenting on so many of his posts, that I decided to start my own blog. I tried many different names, most using Dear Son’s real name however they were all taken. Finally, I chose Dream Mom. And the rest is well, history.
I started telling stories about my love for Dear Son and on occasion posts about other topics. However, most people responded mainly to stories I wrote about him, so that soon became my primary focus.
In reflecting on the last year, I thought I’d highlight some of the more memorable posts and highlight the last year in general.
My Personal Favorite Post: Once Is Not Enough This was a story I wrote about Dear Son saying his first word after not speaking for many years. Although he has no language, he has been able to say a few words over the years: "Hi", "Ma" and "I Love You". Only the "hi" is intelligible. Other favorites are in my side bar.
I started telling stories about my love for Dear Son and on occasion posts about other topics. However, most people responded mainly to stories I wrote about him, so that soon became my primary focus.
In reflecting on the last year, I thought I’d highlight some of the more memorable posts and highlight the last year in general.
My Personal Favorite Post: Once Is Not Enough This was a story I wrote about Dear Son saying his first word after not speaking for many years. Although he has no language, he has been able to say a few words over the years: "Hi", "Ma" and "I Love You". Only the "hi" is intelligible. Other favorites are in my side bar.
Most Popular: Dr. Rey, Hayley Rey and Me and Super Size She. It never ceases to amaze me with all of the searches for these two. I can't even count the number of hits I get for each of them after Dr. 90210 airs or after the documentary on Joanna Thomas, a female bodybuilder and the real Super Size She. Long before women's bodybuilding came about, I used to read about men's bodybuilding, back in the days prior to Muscle and Fitness magazine. When women's bodybuilding came about, I was very excited since I loved the sport. The photo above is me at age 25 in 1983 when women's bodybuilding was not was it is today. At the time above, I could bench press 165 pounds (one rep, free weights) and run a 5:31 mile. I worked out several hours a day, mostly cardio (running, aerobics, biking, racquetball) since that was my favorite as well as free weights. I assumed my children would be active as well. It wasn't until Dear Son came along, that I devoted all of my time to his issues. I never dreamed my muscles would be used to lift him instead of working out with him. Photo credits: Larry Agron, Women's Physique World Magazine.
MRSA Pneumonia Series: This was a four part series that I wrote last year after Dear Son suffered his first of two MRSA pneumonias last year. If there was a low point last year, this was it. I thought Dear Son would die on Mother's Day.
Part I-How It Began
Part II-The Rescue
Part III-A Mother's Day to Remember
Part IV-The Conclusion
The Graduate: After the MRSA pneumonia, Dear Son graduated from the 8th grade. He would go back in the hospital a short time later with a second MRSA pneumonia.
Blogburst Invitation: One of the highlights of the year was the invitation from Blogburst.
Most Controversial: The Ashley Treatment Series.
Highlight of the Year: Being on CNN. It was a chance to speak about something important to me, the care and treatment of severely disabled children.
A year ago, when I started blogging, I never would have predicted in my wildest dreams what a fun this year this would be. I loved writing stories about Dear Son and even more, I have enjoyed all of your wonderful comments as well as all of your support. Your support and prayers during Dear Son’s MRSA pneumonia was the highlight of my day. When those days were dark, I could always log on and know that you were praying for him. That meant the world to me.
A year ago, when I started blogging, I never would have predicted in my wildest dreams what a fun this year this would be. I loved writing stories about Dear Son and even more, I have enjoyed all of your wonderful comments as well as all of your support. Your support and prayers during Dear Son’s MRSA pneumonia was the highlight of my day. When those days were dark, I could always log on and know that you were praying for him. That meant the world to me.
After a while, I became tired and exhausted from caring for Dear Son, working, and then trying to write new posts. So I quit. For a few weeks. Then came the invitation to join Blogburst. I accepted however it required that I start writing again. As soon as I began to lag again, the Ashley Treatment came up and I decided to write about that. For the most part, the purpose of my blog is to have fun. I hate controversy and I hate conflict. That’s the reason I write mostly about Dear Son. But the Ashley Treatment changed my life and changed the way I view the world. From there, came the CNN interview.
All the while, Dear Son continued to stay out of the hospital. I am not sure how many more stories I have about Dear Son, so I may need to expand a bit and talk about some other things. Dear Son's abilities are quite limited and there are only so many stories I can write about him before I start repeating myself. I know that my postings can sometimes be a bit sporadic at times however over the last three months, I am not longer getting any breaks on the weekend, like I used too, which limits my sleep. I haven't had a entire night's sleep, without getting up to take care of Dear Son, in over two months, so it's a bit difficult to be creative during these times. I am also in the midst of starting a new business which is taking up a lot of my spare time as well as continuing to work part time and care for Dear Son. I appreciate your patience.
But most of all, I need to thank you for all of your support of Dear Son and all of your wonderful comments. I am fortunate to have met so many wonderful people.
Thanks for a great year.
Wednesday, February 07, 2007
The Secret
The Special Education Coordinator had several conversations with me regarding Dear Son’s next placement. At issue, was finding the “appropriate” school for him. At that time, Dear Son’s primary disability was listed as physical since they didn’t make statements with regards to their mental disabilities until the children are a little older. I had asked to see the school they recommended as well as two classrooms (schools) above his level and two schools (classrooms) with lower functioning children than Dear Son so I could understand the difference. Then, I could see for myself as well as check out the classrooms to see how Dear Son would fit in. I was very new to the whole Individual Education Plan (IEP) and Multi-Disciplinary Conferences (MDC) that were required to place Special Needs children, so this exercise would be a good learning experience. Also, as Dear Son’s mother, I needed to be certain that this indeed was the right place for him. While I certainly didn’t have the expertise of the professionals, I did know my own Dear Son and I wasn’t about to take their recommendation without checking it out for myself.
I had toured a few classrooms when we met at a school for extremely lower functioning children. I thought I had seen it all until I got here. From the outside, there was nothing different about the school but inside, would be a different story. I had heard some things about this school, some of them negative, but inside, well, I wasn’t sure if I could handle it.
Up to this point, I had been somewhat sheltered, I would say. Dear Son was quite young and I had about zero experience with mentally and/or physically disabled children. In fact, my experience with Dear Son was about it. I had tried reading some of the books or “recommended” reading from the Easter Seals however I quickly learned that they scared me more than they helped. I abandoned that and figured I would just take things as they came up.
I walked into the school and they took me to a large gymnasium of sorts where there were umpteen kids. The children were doing all kinds of things, none of them structured, from what I could gather. The children were all severely mentally and/or physically disabled. It was the scariest group of children I have ever seen. To this day, I have never seen a group that frightened me as much as they did. I looked around and the whole room was extremely active. I had a hard time figuring out just where I should look since there were so many kids moving around. The children who were severely mentally disabled seemed to be mobile; some were in wheelchairs but most, from what I can recall, were ambulatory. I saw one or two standing on their heads and other children doing all kinds of things that just made you shudder. Most of them were not safe. I was worried some of them were going to get hurt but I didn’t know where to look or what to say. All I knew was that Dear Son didn’t belong here and I wanted to get out now. Suddenly, I felt a hand in my hand. I went to pull away quickly when I looked down and saw a pretty little girl there. She had grabbed my hand to hold it. I stopped pulling away and held her hand.
She began talking to me and soon I felt at ease. I don’t recall that she was mentally delayed although I am sure she had to be if she was there. The school seemed very short staffed and I was thankful that this was not an appropriate placement for Dear Son. I thought about this little girl and how she probably saw my fear when I came into the room. She read my face and immediately came over to me to hold my hand. She was a sweet little thing and I was soon embarrassed by my reaction.
It was just one of the things I learned about that year and over the years. There isn’t anything to be afraid of when people are mentally or physically disabled, it’s just different. I think back to my own pregnancy with Dear Son and when they did the prenatal testing for mental retardation. The test came out normal. I remember being relieved that I didn’t have to worry about that, as if that would be the worst thing that would ever happen to me. That’s how pregnant women think. That’s what we are taught to think.
I remember too going to Dear Son’s school these last few years. I met the kids in his classroom and used to talk to them when I came to pick him up for a medical appointment. They weren’t scary kids. All had varying degrees of mental disabilities and some of them had physical disabilities as well. They were friendly kids, they were nice kids, they were kids you’d be proud to know. I remember sitting in the front row at Dear Son’s eighth grade graduation when his classmate came down the front stairs after receiving his diploma. One of the high school kids behind me said to another adult, “I love that kid”.
I have learned over the years that children with mental and physical disabilities are not scary people. They aren’t too be feared. They are just kids. They are loving. They are happy. They are sweet. I never in a million years dreamed I would fall in love with them, but I did.
Society makes them scary. We perform all of these prenatal tests and when they aren’t perfect, we think our lives are over. Nobody bothers to tell us that it’s o.k., it just might be different.
To an outsider, it may appear that we got the raw end of the deal, that our lives as mothers are somehow shortchanged because we have children with disabilities. That would not be true. Motherhood has not been any less rewarding for me because I have a son that is severely disabled. It might even be more rewarding but I don’t know since this is the only life that I have.
I do know this though. We think that if our children are not born totally normal that their lives aren’t worth it. But the secret is, that it doesn’t matter in the end. Motherhood isn’t any less rewarding if your child is disabled. That doesn’t mean I wouldn’t want Dear Son’s life easier or that I would like my life to be easier at times. It doesn’t mean I wouldn’t want my child to be normal. It just means that life isn’t over when your children aren’t perfect. I am lucky I learned “the secret”.
Saturday, February 03, 2007
Super Bowl Sunday-Then and Now
Super Bowl Sunday holds a special place in my heart having nothing to do with football. Many years ago, when Dear Son was only ten weeks old, I had dressed him in the sweetest little football outfit. We had been invited over to my brother’s house to watch the Super Bowl. Being avid football fans, we couldn’t wait. Prior to church service, Dear Son began to have some odd movements (which I later learned were seizures) and I ended up taking him to the Emergency Room and never saw the Super Bowl that day. It was the beginning of our entry into the wild world of healthcare.
You can read all about it in this post that I wrote some time ago called, “Don’t Hate Me Because I am Beautiful”.
As I root for our hometown team today, I will think back to his first Super Bowl, in January of 1992. It was then that we were eventually referred to the Big Academic Medical Center, and Dear Son spent three weeks there. The bill for those three weeks was $45,000. It was there that we met our current pediatric neurologist, who still takes care of Dear Son today. It it weren’t for him, Dear Son wouldn’t be here today.
So today, I’ll dress Dear Son up, in orange and navy, and we’ll watch the game from our living room. And when the half time show comes on, I’ll say a small prayer of thanks, for my own Dear Son, his doctor and all of the little ones who won’t make it to the game today. May they see the Super Bowl for many years to come.
Note: Picture on the left is Dear Son's 1992 football outfit, when he was just ten weeks old. Picture on the right, is Dear Son's last AFO's from a few years back, when he could still stand. It bears our hometown football team, pun intended.
A Mother’s Dream
I had just come home and saw Dear Son. He was lying on a pillow in his tent, watching t.v., happy to see me. I sat him up and lifted his 150 pound frame into his rocker. His rocker, is one that I bought used, not because I couldn’t afford a rocker but rather, for it’s absolutely perfect size. Perfect for Dear Son, who is now fifteen years old. I had searched all over to find one but it wasn’t until I went to an antique show in a far away suburb, that I found this particular rocker and knew it would work. At fifteen, an adult rocker is a bit too tall and deep for him and a child’s rocker is too small. This particular rocker is perfect because it is exactly the right height from the floor to his knees to allow his feet to touch the ground and for him to support himself. The back of the rocker is tall, full of round vertical dowels, tall enough to support the back of his head, since he can not support it on his own. The back is also bowed and wide, allowing plenty of room to support him if he starts to slouch.
He can sit in the rocker for a few minutes at a time. Once he’s exhausted, he’ll slide right out of the rocker and onto the floor, most likely hitting his head since he can’t stop himself once his body gives out. I know this, because it happened once. Once he’s tired, you have exactly one second, before this happens so you have to pay attention. His arms and hands have never worked, so when he falls, he’ll fall right on his head because he has no reflexes to put his hands/arms out in front of him when he falls. You have to sit right next to him when he rocks and as soon as he slumps to one side, you have to remove him from the rocker and put him in the wheelchair before he falls. Rocking in the rocker, is his favorite part of the day, so I always make sure to let him rock, even if only briefly, while sitting next to him in the chair.
He was sitting in his rocker gazing into my eyes as I talked to him. He had a big smile on his face and listened intently as I asked him about his day. I had a Respite sitter for a few hours so I could run some errands. I asked him how it was and told him about my day. Sometimes, I’ll hold his hand while I talk to him but most of the time, I just look him in the eye. At some point, it will seem like he wants to say something. I tell him that I wished that he could talk to me. We fantasize about what it would be like if he could talk, just for one day. I tell him that if he could talk for one day, that I wouldn’t say a word. I would let him tell me everything that happened that day and all about what happens at school. I’ll often dream up all of the things I’d like to hear him talk about and he’ll give me this great big smile. It’s a fantasy all right, but one he loves to hear. At other times, he’ll be lying in his bed and I’ll sit in the chair next to his bed talking to him and I’ll mention how great it would be if he could talk to me for one day. He’ll always smile and sometimes kiss my hand, letting me know that it’s a great idea or that I am saying exactly what he’s thinking. Then he’ll drift off to sleep.
Once he’s sleeping, my mind will wander off and I wonder what it would be like, to live in this world and never have any language. Never be able to talk, ever. I wonder how different the world would appear to me when I would have no voice, when all I could do was listen. I wonder what type of person I would be. Would I be the same? I wonder too, if you can never speak, how you feel good. It’s exciting when you get to tell someone about something good that has happened in your life. Or, it’s great to have a friend to confide in when things aren’t going very well. But what do you do when you never get to speak? About anything. What would it be like to go out to a restaurant and not say a word. Or go to a movie and not talk about it once it’s over.
I think about Dear Son sometimes when he goes to school. What happens when they do something at school that he did at home and he wants to tell them a story? Only, there is no story to tell because he can’t talk. He can only listen. It must be frustrating too.
I look over at Dear Son again and watch him sleep. He coughs and his cough sounds deeper now. I wonder if his voice has changed and how it might sound if he could talk. I wonder too if he dreams of the day when the children without any voices can speak and the rest of the world is silent for a day, and listens. I kiss his head and leave the room. It’s silent now. As it always is. Some mothers dream of the part of their day when it’s quiet, when their children aren’t talking and they have a few minutes to themselves. I wish for the day, when it’s no longer silent, and the only voice I hear, is that of Dear Son.
He can sit in the rocker for a few minutes at a time. Once he’s exhausted, he’ll slide right out of the rocker and onto the floor, most likely hitting his head since he can’t stop himself once his body gives out. I know this, because it happened once. Once he’s tired, you have exactly one second, before this happens so you have to pay attention. His arms and hands have never worked, so when he falls, he’ll fall right on his head because he has no reflexes to put his hands/arms out in front of him when he falls. You have to sit right next to him when he rocks and as soon as he slumps to one side, you have to remove him from the rocker and put him in the wheelchair before he falls. Rocking in the rocker, is his favorite part of the day, so I always make sure to let him rock, even if only briefly, while sitting next to him in the chair.
He was sitting in his rocker gazing into my eyes as I talked to him. He had a big smile on his face and listened intently as I asked him about his day. I had a Respite sitter for a few hours so I could run some errands. I asked him how it was and told him about my day. Sometimes, I’ll hold his hand while I talk to him but most of the time, I just look him in the eye. At some point, it will seem like he wants to say something. I tell him that I wished that he could talk to me. We fantasize about what it would be like if he could talk, just for one day. I tell him that if he could talk for one day, that I wouldn’t say a word. I would let him tell me everything that happened that day and all about what happens at school. I’ll often dream up all of the things I’d like to hear him talk about and he’ll give me this great big smile. It’s a fantasy all right, but one he loves to hear. At other times, he’ll be lying in his bed and I’ll sit in the chair next to his bed talking to him and I’ll mention how great it would be if he could talk to me for one day. He’ll always smile and sometimes kiss my hand, letting me know that it’s a great idea or that I am saying exactly what he’s thinking. Then he’ll drift off to sleep.
Once he’s sleeping, my mind will wander off and I wonder what it would be like, to live in this world and never have any language. Never be able to talk, ever. I wonder how different the world would appear to me when I would have no voice, when all I could do was listen. I wonder what type of person I would be. Would I be the same? I wonder too, if you can never speak, how you feel good. It’s exciting when you get to tell someone about something good that has happened in your life. Or, it’s great to have a friend to confide in when things aren’t going very well. But what do you do when you never get to speak? About anything. What would it be like to go out to a restaurant and not say a word. Or go to a movie and not talk about it once it’s over.
I think about Dear Son sometimes when he goes to school. What happens when they do something at school that he did at home and he wants to tell them a story? Only, there is no story to tell because he can’t talk. He can only listen. It must be frustrating too.
I look over at Dear Son again and watch him sleep. He coughs and his cough sounds deeper now. I wonder if his voice has changed and how it might sound if he could talk. I wonder too if he dreams of the day when the children without any voices can speak and the rest of the world is silent for a day, and listens. I kiss his head and leave the room. It’s silent now. As it always is. Some mothers dream of the part of their day when it’s quiet, when their children aren’t talking and they have a few minutes to themselves. I wish for the day, when it’s no longer silent, and the only voice I hear, is that of Dear Son.
Monday, January 29, 2007
The Hospital Bed
I had avoided the hospital bed for as long as I could but it was now time to put aside my notions and order the dreaded bed. Over the last few years, there have been countless conversations by Dear Son’s physicians, therapists and well meaning people who tell me I should get a "hospital" bed for Dear Son. I always resist and tell them that it’s not necessary. I mean, we have spent a lot of time in the hospital over the last fifteen years and the absolute last thing I want in my home is a "hospital" bed.
The image of the oversized, ugly hospital bed looms in my head and I can’t quite allow it’s image. It’s the horrible foam mattress with the waterproof rubber exterior that somehow gets to me. It’s the hole in the center of the mattress so you can’t roll over. It’s the side rails that squeak with the hinges that never seem to work right. It’s the foam pads they place on them for seizure precautions that get stuck in the rails. It’s all of these things and more. I know because I slept on a few of them when I stayed with Dear Son. When I wasn’t sleeping on one of them, I was sleeping on a sofa that turned into a bed. Sounds more comfortable than it was, since it was more like a plywood panel padded with vinyl. My back would hurt so bad when I slept on them, that I could hardly walk the next day.
But Dear Son’s current bed was no longer working for him. The bed didn’t sit high enough for the Hoyer Lift to fit under it. I tried different casters to raise the bed but it didn’t work since the frame kept buckling. I tried three different frames however none of them worked. I tried lifting weights to stay strong to continue lifting Dear Son. But in the end, it was pointless. I needed to use the Hoyer Lift for lifting and no amount of weight lifting was going to help me lift his 150 plus pound body indefinitely. After all, he is still growing, getting heavier and taller by the minute.
I went on-line and found a beautiful bed. It was even a demo which made it less expensive. I was hoping that I might be able to get it approved by the insurance and it wouldn’t look so bad. But it was not going to happen. So I went to our current durable medical equipment vendor to see the bed that our insurance most likely would approve. It was a “long” twin bed, with a metal headboard and footboard, not nearly as bulky as I imagined. I asked for split rails, instead of a full rail to make it easier and safer for Dear Son. The vendor assured me the mattress was “very firm”. He told me to try it out. I layed on the mattress. It was better than the old ones in the hospital but it was still very uncomfortable, or should I say, horrible.
The bed will be here in a few days. I have decided I will try and make the bed as nice as possible. I am going to try to use Dear Son’s current mattress, which shouldn’t be a problem, as long as I don’t raise and lower the head or foot of the bed. I don’t need either of those right now, I just need to be able to raise and lower it to make dressing and changing easier for me. And I need to be able to get the Hoyer Lift under the bed.
I am going out to get some new sheets and bedding for his new bed. I am thinking about ways to upholster the headboard and footboard to make it look less institutional. I think I have that resolved. I am going to make it look as much like a teenager’s room as I can, trying to get Dear Son excited about this latest transition.
It’s not much fun when you bedroom begins to look like a hospital room. I already have the IV pole, the feeding pump, the diapers, changing pads, wipes, etc. I suppose adding the hospital bed won’t really matter. The only thing left is having the nurse come in the middle of the night to give his meds. I have avoided that up to now choosing instead to forgo some sleep for my privacy.
But what will I tell Dear Son? That is the question. Your home is not a hospital. Your home is the one place that you have that you can come home to and everything is exactly as you like it. You “create” a home. It’s not a hotel, it’s not a hospital, it’s a home. It’s where you come when you get “out” of the hospital. It’s the place where you look forward to sleeping in your “own” bed. But when your “own” bed is a hospital bed, what is there to look forward to? What will I tell Dear Son the next time we are in the hospital? How nice it will be to sleep in his own “hospital” bed?
The image of the oversized, ugly hospital bed looms in my head and I can’t quite allow it’s image. It’s the horrible foam mattress with the waterproof rubber exterior that somehow gets to me. It’s the hole in the center of the mattress so you can’t roll over. It’s the side rails that squeak with the hinges that never seem to work right. It’s the foam pads they place on them for seizure precautions that get stuck in the rails. It’s all of these things and more. I know because I slept on a few of them when I stayed with Dear Son. When I wasn’t sleeping on one of them, I was sleeping on a sofa that turned into a bed. Sounds more comfortable than it was, since it was more like a plywood panel padded with vinyl. My back would hurt so bad when I slept on them, that I could hardly walk the next day.
But Dear Son’s current bed was no longer working for him. The bed didn’t sit high enough for the Hoyer Lift to fit under it. I tried different casters to raise the bed but it didn’t work since the frame kept buckling. I tried three different frames however none of them worked. I tried lifting weights to stay strong to continue lifting Dear Son. But in the end, it was pointless. I needed to use the Hoyer Lift for lifting and no amount of weight lifting was going to help me lift his 150 plus pound body indefinitely. After all, he is still growing, getting heavier and taller by the minute.
I went on-line and found a beautiful bed. It was even a demo which made it less expensive. I was hoping that I might be able to get it approved by the insurance and it wouldn’t look so bad. But it was not going to happen. So I went to our current durable medical equipment vendor to see the bed that our insurance most likely would approve. It was a “long” twin bed, with a metal headboard and footboard, not nearly as bulky as I imagined. I asked for split rails, instead of a full rail to make it easier and safer for Dear Son. The vendor assured me the mattress was “very firm”. He told me to try it out. I layed on the mattress. It was better than the old ones in the hospital but it was still very uncomfortable, or should I say, horrible.
The bed will be here in a few days. I have decided I will try and make the bed as nice as possible. I am going to try to use Dear Son’s current mattress, which shouldn’t be a problem, as long as I don’t raise and lower the head or foot of the bed. I don’t need either of those right now, I just need to be able to raise and lower it to make dressing and changing easier for me. And I need to be able to get the Hoyer Lift under the bed.
I am going out to get some new sheets and bedding for his new bed. I am thinking about ways to upholster the headboard and footboard to make it look less institutional. I think I have that resolved. I am going to make it look as much like a teenager’s room as I can, trying to get Dear Son excited about this latest transition.
It’s not much fun when you bedroom begins to look like a hospital room. I already have the IV pole, the feeding pump, the diapers, changing pads, wipes, etc. I suppose adding the hospital bed won’t really matter. The only thing left is having the nurse come in the middle of the night to give his meds. I have avoided that up to now choosing instead to forgo some sleep for my privacy.
But what will I tell Dear Son? That is the question. Your home is not a hospital. Your home is the one place that you have that you can come home to and everything is exactly as you like it. You “create” a home. It’s not a hotel, it’s not a hospital, it’s a home. It’s where you come when you get “out” of the hospital. It’s the place where you look forward to sleeping in your “own” bed. But when your “own” bed is a hospital bed, what is there to look forward to? What will I tell Dear Son the next time we are in the hospital? How nice it will be to sleep in his own “hospital” bed?
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.
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.
Monday, January 22, 2007
Time Off
I need to take a few days off to attend to some things. I will try and have a new post at the end of the month. Thank you for your support.
Saturday, January 13, 2007
The Ashley Treatment-Final Thoughts
In preparation for the CNN filming on Wednesday, I went out to the parent’s blog and wrote down every issue that they raised as a reason for this “Treatment” along with my thoughts on it. (I also created a separate spreadsheet of the “real issues” or underlying issues in the Ashley Treatment.) Nevertheless, I was extremely well prepared for my fifteen minutes of fame. I prepared exactly as I would if I were going to a client site for business. As expected, many of the conversations we had on film, were left on the editing floor. Regardless, they did a beautiful job.
I thought it might be interesting to share with you, a few final thoughts on some of the concerns or issues that Ashley’s parents raised on their blog. The purpose of this exercise is to help people who do not care for severely disabled children, to better understand what other options or solutions are available to severely disabled children, and to add some questions and/or comments as food for thought. Certainly every solution has it’s benefits, as the a parents pointed out, like removing her breasts so she wouldn’t get breast cancer, however because it is a solution with a benefit, doesn’t mean it was the best solution for a six year old or for a six year old severely disabled child.
These comments are strictly my opinion and I thought it would be helpful for people to understand that many of their concerns are not unique, nor is Ashley the first severely disabled child to have these issues. What I found difficult to understand was the solutions, the rationale for the solutions, and the failure of pediatric physicians, her teachers and her therapists to offer these common solutions that are offered to severely disabled children. I will speak from my own direct experience with Dear Son who’s encountered these exact same issues. I should also point out, that Dear Son has no use of his arms or hands that make it more difficult. Ashley however, does not have that issue, that I am aware.
As a reminder, I am a single mother and take care of Dear Son on my own without any private duty nursing. His is 150 pounds, approximately 5’9” tall, can not walk, sit up, roll over, stand, weight bear and has no use of his arms or hands. He wear diapers and is not toilet trained. He has intractable seizures due to a rare gene mutation (His diagnosis is Cryptogenic Infantile Spasms caused by the ARX mutation-it’s so new they don’t even have a name for it yet. The gene was only discovered in 2002 and he was one of the first cases to be identified and they created a mouse using Dear Son’s DNA.) He has a Vagus Nerve Stimulator, is on six seizure meds and two GI meds that are given four times a day and has a feeding tube. I give him meds at 6 a.m., noon, 6 p.m and midnight. I get up at 4:10 a.m. to start his feedings to they will be done at school. I am also up many times in between. I work part time in addition to taking care of him full time. I do not have any household help. I have lived this life. Here are my thoughts.
Issue: It’s physically difficult to move her.
Solution: Stunt growth to make it easier.
My thoughts: Moving children with severe disabilities can be hard and can be tough. It’s not easy. When my own Dear Son was younger, I wondered how I would move him. I didn’t know about the many options that were available however I had many people that helped me with these solutions: our therapists at school, our durable medical equipment vendor, our pediatric neurologist and our physiatrist (a physician who specializes in physical medicine and rehabilitation). In 2004, when Dear Son became very immobile, I spent two weeks in a rehabilitation hospital with him to learn how to dress him, lift him easier, use different equipment, as well as try to improve his functioning.
We have equipment to make it easier to move children. One of the most common pieces of equipment that is used is a Hoyer Lift. It doesn’t matter what particular weight the child is because you typically will get one of these when you begin to reach your limit to lift these children. A Hoyer Lift is a common piece of equipment for the severely disabled. It’s not difficult to use. I got ours recently however Dear Son’s bed wasn’t high enough for the lift to fit under. After trying different castors and bed frames, I ordered a hospital bed. The hospital bed will have enough room to get the lift under it and will raise and lower making it easier to dress him, change his diaper and give him a different position instead of lying down all the time. I also have a wooden sliding board that I set on the rear seat in the back of my car; I set Dear Son on it and then slide him over into the proper position on the seat. You then pull the board out from under him and fasten his seatbelt. My biggest challenge is the $2000 a year limit on durable medical equipment which means it only partially covers one of the pieces of equipment a year.
Most children who are severely disabled still go to school and will be in a special needs classroom. Every year, an Individualized Education Plan is created, also known as an IEP, that lists the goals for the year. Included in these discussions are the teachers, parents, all of the therapists that treat that severely disabled child, along with the people from the special education co-operative. A common goal for these kinds of kids is transfers, like transferring them from a bed to a wheelchair. This was one of Dear Son’s goals in grade school. The physical therapist will typically make recommendations for equipment for your child and then your child’s pediatrician will write the actual prescription and a letter of medical necessity for the child. If it’s decided that they need this equipment at school, they will write tn in the IEP and the school will get it for use at school.
In this case, the parents report that they move Ashley from room to room with a double stroller and that she likes to lie down.
Food for thought: How did the stunting her growth make the move easier? Why didn’t a physical therapist recommend a Hoyer Lift and/or why didn’t her physicians make an “appropriate” referral for therapy services for equipment evaluation. Typcially, when your child can’t sit up any longer, one solution is a tilt wheelchair, that Dear Son just received. It allows you to tilt the child back, makes transfers easier for the child who can’t support themselves, and opens up the chest area.
Finally, how did the surgery make it easier to move her, when they still transport her in a double stroller? Also, if Ashley were taller and heavier, all of the above solutions would work.
Issue: If she’s too big, she’ll have to go into an institution.
Solution: Stunt the growth so she can be cared for at home.
My thoughts: Becca summed it up best when she said that, “No one ever gets too big to go to a home, ever. That’s what hoists, and bath lifts, and slider boards and adjustable height beds and changing tables are for.”
I addressed all of these except the bath lift which I will address here.
Issue: If she’s too tall, she can’t go into a bathtub.
Solution: Stunt growth so she won’t grow so tall and can be bathed in a tub.
My thoughts: Bathing is a common challenge. While there are shower type chairs, I know my own Dear Son never liked a shower. He prefers baths. Their concerns, from what I read, was that she wouldn’t be able to take a bath because she needed some head support and needs to lie down in the tub.
Dear Son is probably 5’9” or above. It’s hard to measure when they can’t stand up. He wears a 34 inch inseam pant so he could be closer to 6 feet tall. He is taller than Ashley would be at full adult growth. He fits into the tub. At the present time, I have a bath chair that fits in the tub that supports his head and arms. One problem I had was that I can’t lift him into the tub and it was getting hard for his Dad to do this. We recently ordered a hydrolic bath lift with headrest and reclining wing support because Dear Son can not hold his head up due to hypotonia and I can’t lift him due to his weight and size (it’s hard to dead lift a slippery child from a tub with the weight of the child and the water pulling him down). I had an in-home evaluation with our durable medical equipment vendor. He simply made certain that I had one inch on either side of the tub for the supports to rest. That’s all that was needed. I live in an apartment so I didn’t make any other modifications. The new lift will support his head, will allow him to lie back and will have the sides supported by the tub. Case solved. He can take a bath and he’s tall. There are also permanent options available to people who live in their homes. I love interior design and have not found many of these solutions to be too bad. You can solve any asthetic issues most of the time. If you like, they also have six foot tubs if people want them however Dear Son fits in a regular tub and he exceeds Ashley’s projected adult height and weight by more than a few inches and more than a few pounds.
Final thoughts: A bath lift would be less intrusive than stunting a child’s growth.
Issue: If she’s too big, she could get bedsores.
Solution: Stunt her growth and it will be less likely.
My thoughts: I am no expert on bed sores however it’s my understanding that frequent movement is the key. The surgery didn’t guarantee these wouldn’t happen and she can still get bedsores. It would be interesting to see if there is Evidence Based Medicine (EBM) regarding whether or not smaller individuals get few bed sores. Most responsible physicians practice EBM.
The parents say they move her often.
My own Dear Son can not roll over and he’s been bedridden since 2004 when he weighed approximately 90 pounds and he’s now 150 pounds. He’s never had a bed sore. Not one. He can not roll over on his own. I typically get up and move him every two hours or if I hear him fuss, I’ll get up and turn him over. Turning him over would be a less invasive solution to this problem. I would also expect that unless bed sores became a “real” problem that they wouldn’t look for a solution. As the mother of a severely disabled child, I have enough things that take up my time, than looking for a problem or trying to solve a problem that doesn’t yet exist.
Issue: If she’s too big, she could get pneumonia.
Solution: Stunt her growth so she won’t get too big.
My thoughts: She can still get pneumonia and the surgery didn’t guarantee these won’t happen. I read that they continue to move her around the house in a double baby stroller lying down and they also state she prefers to lie down instead of sit upright in her wheelchair.
I am not a physician, but with my own experience with Dear Son, who’s had two MRSA pneumonias in 2006, I have been told to keep him upright. One of the reasons for the tilt wheelchair, is that it opens up his chest area, making it easier for him to breathe. Tilting him back not only opens this area up, as opposed to him slumping in the chair, but being upright will make it less likely for pneumonias to occur. For the physicians involved in this case, I would be curious to know if there is any Evidence Based Medicine that supports the claim that size is correlated to pneumonias and also is size a better correlater than being upright.
In addition, as I mentioned earlier, a hospital bed that raises and lowers, would allow for better positioning and keeping her upright would lessen the chances for a pneumonia. Was this not offered as an option? Why not?
I am also curious to learn how the school transports her. I doubt a double stroller is used. Were they involved in this discussion? Was the school psychologist involved in this discussion? I know in Dear Son’s case, they use his tilt wheelchair at school, they use a Hoyer Lift and they use a bench for him to lie on with lots of different wedges for proper support.
Finally, a lot of the issues that the parents raised for the surgery, seem to be equipment based. Prior to this committee discussion, was an in-home evaluation performed to see what equipment could assist with her care. If not, why not?
And lastly, did the surgery lessen the chances for pneumonia?
Issue: It’s hard to hold and love her.
Solution: Stunting her growth and keeping her smaller will make it easier for her parents to cuddle her and hold her.
My thoughts: I can’t begin to lift Dear Son up and cuddle him like a baby. I haven’t been able to do it for years. I don’t know many mothers or grandmothers who wouldn’t love to hold their babies and kiss their head. But kids grow. When they are around ten or so, most mothers will be sad their “babies” are growing up and they can’t do that. They will mourn the loss of that. But each age brings something new and exciting. That’s part of the joy of being a mother, watching your kids grow up. The same occurs for disabled children.
I get up every morning and go over to Dear Son’s room and take his arms, which don’t work, and wrap one of them around my neck. I then wrap my arms around him and give him a hug and kisses. That’s what we do. (That’s also how I learned he needed to go to the hospital for the MRSA pneumonia. I went to hug him and he was so hot it took my breath away. You can read about that in the MRSA Pneumonia, Part One.) He still is loved but I don’t need to hold him like a baby to do it. When I get ready to lift him into the wheelchair, I lift his back up and off the bed, and then stop a minute to hug him before putting him into the chair. If I bring him into the living room, I prop him on the sofa and support him by holding him up next to me. I kiss him on the head. His Dad does the same thing when he has him. He is loved.
Issue: She is 100% dependent on Care Givers.
Solution: Stunt her growth to make it easier to care for her.
My thoughts: According to their blog, I understand that the parents and the Grandmother care for her. As a result of the surgery, did it allow any more people to care for her?
Issue: She has a 5% chance of developing appendicitis in the general population and she can’t tell you she’s in pain.
Solution: Remove appendix so she’ll never get appendicitis.
My thoughts: She could still get other things. Are we going to remove every possibility of anything that might happen? They say that she enjoys music and I’ve seen pictures of her smiling. I know with my own Dear Son, he does the same thing. I believe if a child can show pleasure, they can show pain.
In every pediatric emergency room I have ever been in, and I’ve been in almost twenty hospitals to date, there is a sign on the wall with faces for the child to rate the amount of pain they are having. Typically, a child will point to the level of pain. Even if they can’t, they will still make a face or they will be different from “their” normal routine. Worse case scenario, Ashley’s parents can match up her face to the chart on the wall.
Although I am not a physician or a nurse, the biggest indicator to me of an infection of any kind is a fever.
I know my own Dear Son can’t talk. I usually know something’s wrong when he 1) has a fever, 2) sleeps more than normal 3) doesn’t enjoy his usual country music and 4) has a sick look in his eyes. It’s more common sense than rocket science. Once you care for these kids, you know when something’s not right.
Issue: Periods are hard to manage. How would she deal with menstrual cramps? How could she defend herself if she were attacked? She won’t ever bear children.
Solution: Hysterectomy
My thoughts: Someone once said on one of the blogs, “What’s one more thing in the diaper?” Another thought is that it’s an assumption that all women have discomfort with their menstrual cycle. I am not certain that this is a fact. I can’t remember a time in the last twenty years when I ever had cramps. That may be TMI or just me but my point is it’s not universal. If she was making a face (see the pains faces in the ER above) and you knew she was in pain, you could quickly assess if anything was serious or not. You could check for a fever. If not fever then you could go down the line to see if there was an issue. I haven’t found it particularly difficult to figure out when Dear Son was in pain. He still cried, made a noise or got a fever if something was up. They say Ashley flaps her arms and responds to music. If she can do this, then she can clearly show when something isn’t right. You could also give her some pain reliever in through the g-tube if it wasn’t anything serious, even if you didn’t know what was wrong.
I have a respite worker that is also an aide to the severely handicapped at school. She cares for severely disabled children who are ages nine to eleven at school. She cares for young disabled girls with breasts and periods. She was also Dear Son’s aide at school when he was that age. We’ve had many discussions over the years about many of the issues facing these girls. The biggest challenge was getting the physically abled girls to go to the bathroom, so she could help them get changed, when they were leaking or to make sure they won’t leak. She would have to help them, and change their clothes. I am not aware of any issues that she had with the severely disabled girls in terms of pain or cramps. I am not saying they don’t exist, only that the challenges were getting them to the bathroom, not pain issues.
A hysterectomy does not prevent anyone from attacking Ashley; it only prevents a pregnancy. How was this procedure justified? Is this a “use it or lose it”. If someone will never have children, do we need to start performing hysterectomies? And what age is too young? How about three years old? And can we accurately predict at birth, what a child’s full potential is? And how will we measure that?
Finally, a question for the physicians. Is it reasonable to give a hysterectomy to a child at six years old on the basis that she “may” encounter these problems? I am having difficulty understanding a lot of the rationale surrounding this case. Most good physicians are pretty strict about using both evidence based medicine to make decisions and about making appropriate referrals when care is needed and the problem lies outside their level of expertise.
Issues: Boredom, Want to improve quality of life.
Solution: Stunt Growth to make it easier to move her, so she can participate in more activities at home-swinging, bathing, going into the living room.
My thoughts: I have covered the equipment issues that make it easier to move her from room to room and I have also covered the fact that the school moves her with different types of equipment. I have discussed the bath chair. I have discussed the fact that the parents did not indicate in the blog that an outcome of the surgery allowed any more people to care for her.
What I think is a better solution to quality of life issues and boredom would be licensed daycare centers that accept severely disabled children. Daycare would not only give her parents a break but allow her more experiences and more stimulation to relieve boredom. This seems like a better solution. Public bathrooms that are family centered with a changing bench would allow the parents to take her on more outings with the family and that allow her more experiences.
As a society we have difficulties in finding a financial model for daycare centers. I have one idea for this but I will cover it in another post. Respite care would help give the parents a break and also provide for someone different to care for her and break up some boredom. There are also places like “Lekotek” that are toy lending libraries that have lots of toys to borrow so you don’t get bored. I used many of these toys when Dear Son was younger and he got a kick out of them.
Finally, is stunting her growth the path of least resistance? As a physician, is this really a valid reason for allowing the surgeries and hormones?
Summary: I have mentioned before that I was troubled by this treatment for many reasons. I hope I have allowed you to view this case from a different viewpoint, from the viewpoint of a single mother who is dealing with all of these issues. I can understand how overwhelming it can be when you are parenting a child with severe disabilities. As a parent, you don’t have all the answers and often you worry about a lot of things that “might” happen. I also know that many of the things I was really worried about, never happened.
What I found difficult to believe in this case, wasn’t the parents asking for these radical solutions, but the fact that I didn’t hear any part where physicians, or other people involved in Ashley’s care, making appropriate referrals for equipment. I didn’t hear anything about whether or not these solutions were based on “Evidence Based Medicine”. I was troubled by the fact that they stated that this committee was composed of 40 individuals, with an equal number of men and women. What were the odds of that? Other things that troubled me were the removal of the breasts. I couldn’t understand the logic of making it easier to move her or for wheelchair straps to be put on. Ashley may or “may not” grow large breasts. Even if she did, there are a variety of straps that support these children. I know because we tried a few different types for Dear Son. On top of that, were odd statements, like “she’ll never get breast cancer”. At six years old, that would be the last thing I would be worried about. How could a responsible physician think that some of these solutions would be appropriate at “six years old”? And finally, it is said that the parents waited outside the room for the decision and the decision was that they could do what they thought was best for her. That’s different than the committee saying they agreed with them.
I also found some surveys that asked, "Who should have the final say on who gets to decide, the Ethicists or the Care Givers?" Some people cried out, what about the disabled? My question is when have “you” ever gone to a physician and presented him with a problem and they told you that you could do what “you” thought was best? Huh? I expect that when I talk to my son’s Pediatric Neurologist, his Primary Care Physician, we can speak openly about a problem. He’ll ask me questions and I’ll typically ask him about solutions that I have heard, or about things I may have read on the internet. If it’s not his area of expertise, he makes an appropriate referral, usually to a pediatric physician at the Big Academic Medical Center. When we have our visit, he’ll run a series of tests, to see if the solution is warranted. Then he’ll offer me some options, starting with the least invasive. If something is not a solution, he’ll tell me it’s not viable. He is in charge of the care. Not me the Care Giver, not me the Mother, not my Dear Son and not the Ethicists. When he presents the solution to me, he explains it to me. I trust that he knows what he is doing since he’s given a high level of care and since he’s saved Dear Son’s life on a number of occasions. If I was uncomfortable, I would address that with him. If I didn’t understand something, I might ask more questions or get a second opinion. I trust him because he practices Evidence Based Medicine. I trust him because he looks out for Dear Son’s best interests as well as mine. I trust him because I know he is ethical. I also have a long standing relationship with him. He is an expert on children. He is a medical doctor. He has the same standards for all his patients. I don’t expect that he has a different set of rules for the disabled than he does for able bodied patients. He respects all children. He also understands a lot of issues related to the care of severely disabled children. What I don’t think he would ever do though, is allow me to make my own decisions for Dear Son, without Evidence Based Medicine to back it up.
I also believe in human dignity. There were many years when Dear Son didn’t have a clue what was going on. There still are times every year, when he’s totally gone, frequently after a long hospitalization. He might sleep for months and isn’t allowed to go to school, as was the case in the fall of 2005. He was so out of it and weak in early November of 2006, when I wrote, “Killing Me Softly With His Song” that I thought he’d never recover. I’ve been very lucky. He somehow hangs on. He’s been doing better since I had his birthday parties in November and Christmas parties in December. But even when he didn’t know what was going on, I still gave him a bath, I still changed his diapers, I still fed him nutritious food and I still loved him. He wasn’t any less a person because he couldn’t do things or because he didn’t know what was going on. Never. I always tried to make him feel good about who he was, regardless of what his body could or couldn’t do. I learned to admire him for being a healthy, well adjusted young man, despite his disabilities. I wish I were as confident as he is some days and I have a lot of abilities.
I realize that caring for severely disabled children is difficult, but this case is not about these issues. The real issues are that we do a lousy job as a society in caring for these children. But no one wants to talk about that. And that will never lead to the change we need. I’ll still have to take home Dear Son to change his diaper when we are out. And that is just the tip of the iceberg on the real issues we face.
P.S. *As a reminder, don’t forget to vote for me at the 2006 Medical Weblog Awards under “Best Patient Blog”. You can vote here. Just click on, “Dream Mom” and hit the “vote” button. Polls are open from January 3, 2007 through January 14th. Thank you.
I thought it might be interesting to share with you, a few final thoughts on some of the concerns or issues that Ashley’s parents raised on their blog. The purpose of this exercise is to help people who do not care for severely disabled children, to better understand what other options or solutions are available to severely disabled children, and to add some questions and/or comments as food for thought. Certainly every solution has it’s benefits, as the a parents pointed out, like removing her breasts so she wouldn’t get breast cancer, however because it is a solution with a benefit, doesn’t mean it was the best solution for a six year old or for a six year old severely disabled child.
These comments are strictly my opinion and I thought it would be helpful for people to understand that many of their concerns are not unique, nor is Ashley the first severely disabled child to have these issues. What I found difficult to understand was the solutions, the rationale for the solutions, and the failure of pediatric physicians, her teachers and her therapists to offer these common solutions that are offered to severely disabled children. I will speak from my own direct experience with Dear Son who’s encountered these exact same issues. I should also point out, that Dear Son has no use of his arms or hands that make it more difficult. Ashley however, does not have that issue, that I am aware.
As a reminder, I am a single mother and take care of Dear Son on my own without any private duty nursing. His is 150 pounds, approximately 5’9” tall, can not walk, sit up, roll over, stand, weight bear and has no use of his arms or hands. He wear diapers and is not toilet trained. He has intractable seizures due to a rare gene mutation (His diagnosis is Cryptogenic Infantile Spasms caused by the ARX mutation-it’s so new they don’t even have a name for it yet. The gene was only discovered in 2002 and he was one of the first cases to be identified and they created a mouse using Dear Son’s DNA.) He has a Vagus Nerve Stimulator, is on six seizure meds and two GI meds that are given four times a day and has a feeding tube. I give him meds at 6 a.m., noon, 6 p.m and midnight. I get up at 4:10 a.m. to start his feedings to they will be done at school. I am also up many times in between. I work part time in addition to taking care of him full time. I do not have any household help. I have lived this life. Here are my thoughts.
Issue: It’s physically difficult to move her.
Solution: Stunt growth to make it easier.
My thoughts: Moving children with severe disabilities can be hard and can be tough. It’s not easy. When my own Dear Son was younger, I wondered how I would move him. I didn’t know about the many options that were available however I had many people that helped me with these solutions: our therapists at school, our durable medical equipment vendor, our pediatric neurologist and our physiatrist (a physician who specializes in physical medicine and rehabilitation). In 2004, when Dear Son became very immobile, I spent two weeks in a rehabilitation hospital with him to learn how to dress him, lift him easier, use different equipment, as well as try to improve his functioning.
We have equipment to make it easier to move children. One of the most common pieces of equipment that is used is a Hoyer Lift. It doesn’t matter what particular weight the child is because you typically will get one of these when you begin to reach your limit to lift these children. A Hoyer Lift is a common piece of equipment for the severely disabled. It’s not difficult to use. I got ours recently however Dear Son’s bed wasn’t high enough for the lift to fit under. After trying different castors and bed frames, I ordered a hospital bed. The hospital bed will have enough room to get the lift under it and will raise and lower making it easier to dress him, change his diaper and give him a different position instead of lying down all the time. I also have a wooden sliding board that I set on the rear seat in the back of my car; I set Dear Son on it and then slide him over into the proper position on the seat. You then pull the board out from under him and fasten his seatbelt. My biggest challenge is the $2000 a year limit on durable medical equipment which means it only partially covers one of the pieces of equipment a year.
Most children who are severely disabled still go to school and will be in a special needs classroom. Every year, an Individualized Education Plan is created, also known as an IEP, that lists the goals for the year. Included in these discussions are the teachers, parents, all of the therapists that treat that severely disabled child, along with the people from the special education co-operative. A common goal for these kinds of kids is transfers, like transferring them from a bed to a wheelchair. This was one of Dear Son’s goals in grade school. The physical therapist will typically make recommendations for equipment for your child and then your child’s pediatrician will write the actual prescription and a letter of medical necessity for the child. If it’s decided that they need this equipment at school, they will write tn in the IEP and the school will get it for use at school.
In this case, the parents report that they move Ashley from room to room with a double stroller and that she likes to lie down.
Food for thought: How did the stunting her growth make the move easier? Why didn’t a physical therapist recommend a Hoyer Lift and/or why didn’t her physicians make an “appropriate” referral for therapy services for equipment evaluation. Typcially, when your child can’t sit up any longer, one solution is a tilt wheelchair, that Dear Son just received. It allows you to tilt the child back, makes transfers easier for the child who can’t support themselves, and opens up the chest area.
Finally, how did the surgery make it easier to move her, when they still transport her in a double stroller? Also, if Ashley were taller and heavier, all of the above solutions would work.
Issue: If she’s too big, she’ll have to go into an institution.
Solution: Stunt the growth so she can be cared for at home.
My thoughts: Becca summed it up best when she said that, “No one ever gets too big to go to a home, ever. That’s what hoists, and bath lifts, and slider boards and adjustable height beds and changing tables are for.”
I addressed all of these except the bath lift which I will address here.
Issue: If she’s too tall, she can’t go into a bathtub.
Solution: Stunt growth so she won’t grow so tall and can be bathed in a tub.
My thoughts: Bathing is a common challenge. While there are shower type chairs, I know my own Dear Son never liked a shower. He prefers baths. Their concerns, from what I read, was that she wouldn’t be able to take a bath because she needed some head support and needs to lie down in the tub.
Dear Son is probably 5’9” or above. It’s hard to measure when they can’t stand up. He wears a 34 inch inseam pant so he could be closer to 6 feet tall. He is taller than Ashley would be at full adult growth. He fits into the tub. At the present time, I have a bath chair that fits in the tub that supports his head and arms. One problem I had was that I can’t lift him into the tub and it was getting hard for his Dad to do this. We recently ordered a hydrolic bath lift with headrest and reclining wing support because Dear Son can not hold his head up due to hypotonia and I can’t lift him due to his weight and size (it’s hard to dead lift a slippery child from a tub with the weight of the child and the water pulling him down). I had an in-home evaluation with our durable medical equipment vendor. He simply made certain that I had one inch on either side of the tub for the supports to rest. That’s all that was needed. I live in an apartment so I didn’t make any other modifications. The new lift will support his head, will allow him to lie back and will have the sides supported by the tub. Case solved. He can take a bath and he’s tall. There are also permanent options available to people who live in their homes. I love interior design and have not found many of these solutions to be too bad. You can solve any asthetic issues most of the time. If you like, they also have six foot tubs if people want them however Dear Son fits in a regular tub and he exceeds Ashley’s projected adult height and weight by more than a few inches and more than a few pounds.
Final thoughts: A bath lift would be less intrusive than stunting a child’s growth.
Issue: If she’s too big, she could get bedsores.
Solution: Stunt her growth and it will be less likely.
My thoughts: I am no expert on bed sores however it’s my understanding that frequent movement is the key. The surgery didn’t guarantee these wouldn’t happen and she can still get bedsores. It would be interesting to see if there is Evidence Based Medicine (EBM) regarding whether or not smaller individuals get few bed sores. Most responsible physicians practice EBM.
The parents say they move her often.
My own Dear Son can not roll over and he’s been bedridden since 2004 when he weighed approximately 90 pounds and he’s now 150 pounds. He’s never had a bed sore. Not one. He can not roll over on his own. I typically get up and move him every two hours or if I hear him fuss, I’ll get up and turn him over. Turning him over would be a less invasive solution to this problem. I would also expect that unless bed sores became a “real” problem that they wouldn’t look for a solution. As the mother of a severely disabled child, I have enough things that take up my time, than looking for a problem or trying to solve a problem that doesn’t yet exist.
Issue: If she’s too big, she could get pneumonia.
Solution: Stunt her growth so she won’t get too big.
My thoughts: She can still get pneumonia and the surgery didn’t guarantee these won’t happen. I read that they continue to move her around the house in a double baby stroller lying down and they also state she prefers to lie down instead of sit upright in her wheelchair.
I am not a physician, but with my own experience with Dear Son, who’s had two MRSA pneumonias in 2006, I have been told to keep him upright. One of the reasons for the tilt wheelchair, is that it opens up his chest area, making it easier for him to breathe. Tilting him back not only opens this area up, as opposed to him slumping in the chair, but being upright will make it less likely for pneumonias to occur. For the physicians involved in this case, I would be curious to know if there is any Evidence Based Medicine that supports the claim that size is correlated to pneumonias and also is size a better correlater than being upright.
In addition, as I mentioned earlier, a hospital bed that raises and lowers, would allow for better positioning and keeping her upright would lessen the chances for a pneumonia. Was this not offered as an option? Why not?
I am also curious to learn how the school transports her. I doubt a double stroller is used. Were they involved in this discussion? Was the school psychologist involved in this discussion? I know in Dear Son’s case, they use his tilt wheelchair at school, they use a Hoyer Lift and they use a bench for him to lie on with lots of different wedges for proper support.
Finally, a lot of the issues that the parents raised for the surgery, seem to be equipment based. Prior to this committee discussion, was an in-home evaluation performed to see what equipment could assist with her care. If not, why not?
And lastly, did the surgery lessen the chances for pneumonia?
Issue: It’s hard to hold and love her.
Solution: Stunting her growth and keeping her smaller will make it easier for her parents to cuddle her and hold her.
My thoughts: I can’t begin to lift Dear Son up and cuddle him like a baby. I haven’t been able to do it for years. I don’t know many mothers or grandmothers who wouldn’t love to hold their babies and kiss their head. But kids grow. When they are around ten or so, most mothers will be sad their “babies” are growing up and they can’t do that. They will mourn the loss of that. But each age brings something new and exciting. That’s part of the joy of being a mother, watching your kids grow up. The same occurs for disabled children.
I get up every morning and go over to Dear Son’s room and take his arms, which don’t work, and wrap one of them around my neck. I then wrap my arms around him and give him a hug and kisses. That’s what we do. (That’s also how I learned he needed to go to the hospital for the MRSA pneumonia. I went to hug him and he was so hot it took my breath away. You can read about that in the MRSA Pneumonia, Part One.) He still is loved but I don’t need to hold him like a baby to do it. When I get ready to lift him into the wheelchair, I lift his back up and off the bed, and then stop a minute to hug him before putting him into the chair. If I bring him into the living room, I prop him on the sofa and support him by holding him up next to me. I kiss him on the head. His Dad does the same thing when he has him. He is loved.
Issue: She is 100% dependent on Care Givers.
Solution: Stunt her growth to make it easier to care for her.
My thoughts: According to their blog, I understand that the parents and the Grandmother care for her. As a result of the surgery, did it allow any more people to care for her?
Issue: She has a 5% chance of developing appendicitis in the general population and she can’t tell you she’s in pain.
Solution: Remove appendix so she’ll never get appendicitis.
My thoughts: She could still get other things. Are we going to remove every possibility of anything that might happen? They say that she enjoys music and I’ve seen pictures of her smiling. I know with my own Dear Son, he does the same thing. I believe if a child can show pleasure, they can show pain.
In every pediatric emergency room I have ever been in, and I’ve been in almost twenty hospitals to date, there is a sign on the wall with faces for the child to rate the amount of pain they are having. Typically, a child will point to the level of pain. Even if they can’t, they will still make a face or they will be different from “their” normal routine. Worse case scenario, Ashley’s parents can match up her face to the chart on the wall.
Although I am not a physician or a nurse, the biggest indicator to me of an infection of any kind is a fever.
I know my own Dear Son can’t talk. I usually know something’s wrong when he 1) has a fever, 2) sleeps more than normal 3) doesn’t enjoy his usual country music and 4) has a sick look in his eyes. It’s more common sense than rocket science. Once you care for these kids, you know when something’s not right.
Issue: Periods are hard to manage. How would she deal with menstrual cramps? How could she defend herself if she were attacked? She won’t ever bear children.
Solution: Hysterectomy
My thoughts: Someone once said on one of the blogs, “What’s one more thing in the diaper?” Another thought is that it’s an assumption that all women have discomfort with their menstrual cycle. I am not certain that this is a fact. I can’t remember a time in the last twenty years when I ever had cramps. That may be TMI or just me but my point is it’s not universal. If she was making a face (see the pains faces in the ER above) and you knew she was in pain, you could quickly assess if anything was serious or not. You could check for a fever. If not fever then you could go down the line to see if there was an issue. I haven’t found it particularly difficult to figure out when Dear Son was in pain. He still cried, made a noise or got a fever if something was up. They say Ashley flaps her arms and responds to music. If she can do this, then she can clearly show when something isn’t right. You could also give her some pain reliever in through the g-tube if it wasn’t anything serious, even if you didn’t know what was wrong.
I have a respite worker that is also an aide to the severely handicapped at school. She cares for severely disabled children who are ages nine to eleven at school. She cares for young disabled girls with breasts and periods. She was also Dear Son’s aide at school when he was that age. We’ve had many discussions over the years about many of the issues facing these girls. The biggest challenge was getting the physically abled girls to go to the bathroom, so she could help them get changed, when they were leaking or to make sure they won’t leak. She would have to help them, and change their clothes. I am not aware of any issues that she had with the severely disabled girls in terms of pain or cramps. I am not saying they don’t exist, only that the challenges were getting them to the bathroom, not pain issues.
A hysterectomy does not prevent anyone from attacking Ashley; it only prevents a pregnancy. How was this procedure justified? Is this a “use it or lose it”. If someone will never have children, do we need to start performing hysterectomies? And what age is too young? How about three years old? And can we accurately predict at birth, what a child’s full potential is? And how will we measure that?
Finally, a question for the physicians. Is it reasonable to give a hysterectomy to a child at six years old on the basis that she “may” encounter these problems? I am having difficulty understanding a lot of the rationale surrounding this case. Most good physicians are pretty strict about using both evidence based medicine to make decisions and about making appropriate referrals when care is needed and the problem lies outside their level of expertise.
Issues: Boredom, Want to improve quality of life.
Solution: Stunt Growth to make it easier to move her, so she can participate in more activities at home-swinging, bathing, going into the living room.
My thoughts: I have covered the equipment issues that make it easier to move her from room to room and I have also covered the fact that the school moves her with different types of equipment. I have discussed the bath chair. I have discussed the fact that the parents did not indicate in the blog that an outcome of the surgery allowed any more people to care for her.
What I think is a better solution to quality of life issues and boredom would be licensed daycare centers that accept severely disabled children. Daycare would not only give her parents a break but allow her more experiences and more stimulation to relieve boredom. This seems like a better solution. Public bathrooms that are family centered with a changing bench would allow the parents to take her on more outings with the family and that allow her more experiences.
As a society we have difficulties in finding a financial model for daycare centers. I have one idea for this but I will cover it in another post. Respite care would help give the parents a break and also provide for someone different to care for her and break up some boredom. There are also places like “Lekotek” that are toy lending libraries that have lots of toys to borrow so you don’t get bored. I used many of these toys when Dear Son was younger and he got a kick out of them.
Finally, is stunting her growth the path of least resistance? As a physician, is this really a valid reason for allowing the surgeries and hormones?
Summary: I have mentioned before that I was troubled by this treatment for many reasons. I hope I have allowed you to view this case from a different viewpoint, from the viewpoint of a single mother who is dealing with all of these issues. I can understand how overwhelming it can be when you are parenting a child with severe disabilities. As a parent, you don’t have all the answers and often you worry about a lot of things that “might” happen. I also know that many of the things I was really worried about, never happened.
What I found difficult to believe in this case, wasn’t the parents asking for these radical solutions, but the fact that I didn’t hear any part where physicians, or other people involved in Ashley’s care, making appropriate referrals for equipment. I didn’t hear anything about whether or not these solutions were based on “Evidence Based Medicine”. I was troubled by the fact that they stated that this committee was composed of 40 individuals, with an equal number of men and women. What were the odds of that? Other things that troubled me were the removal of the breasts. I couldn’t understand the logic of making it easier to move her or for wheelchair straps to be put on. Ashley may or “may not” grow large breasts. Even if she did, there are a variety of straps that support these children. I know because we tried a few different types for Dear Son. On top of that, were odd statements, like “she’ll never get breast cancer”. At six years old, that would be the last thing I would be worried about. How could a responsible physician think that some of these solutions would be appropriate at “six years old”? And finally, it is said that the parents waited outside the room for the decision and the decision was that they could do what they thought was best for her. That’s different than the committee saying they agreed with them.
I also found some surveys that asked, "Who should have the final say on who gets to decide, the Ethicists or the Care Givers?" Some people cried out, what about the disabled? My question is when have “you” ever gone to a physician and presented him with a problem and they told you that you could do what “you” thought was best? Huh? I expect that when I talk to my son’s Pediatric Neurologist, his Primary Care Physician, we can speak openly about a problem. He’ll ask me questions and I’ll typically ask him about solutions that I have heard, or about things I may have read on the internet. If it’s not his area of expertise, he makes an appropriate referral, usually to a pediatric physician at the Big Academic Medical Center. When we have our visit, he’ll run a series of tests, to see if the solution is warranted. Then he’ll offer me some options, starting with the least invasive. If something is not a solution, he’ll tell me it’s not viable. He is in charge of the care. Not me the Care Giver, not me the Mother, not my Dear Son and not the Ethicists. When he presents the solution to me, he explains it to me. I trust that he knows what he is doing since he’s given a high level of care and since he’s saved Dear Son’s life on a number of occasions. If I was uncomfortable, I would address that with him. If I didn’t understand something, I might ask more questions or get a second opinion. I trust him because he practices Evidence Based Medicine. I trust him because he looks out for Dear Son’s best interests as well as mine. I trust him because I know he is ethical. I also have a long standing relationship with him. He is an expert on children. He is a medical doctor. He has the same standards for all his patients. I don’t expect that he has a different set of rules for the disabled than he does for able bodied patients. He respects all children. He also understands a lot of issues related to the care of severely disabled children. What I don’t think he would ever do though, is allow me to make my own decisions for Dear Son, without Evidence Based Medicine to back it up.
I also believe in human dignity. There were many years when Dear Son didn’t have a clue what was going on. There still are times every year, when he’s totally gone, frequently after a long hospitalization. He might sleep for months and isn’t allowed to go to school, as was the case in the fall of 2005. He was so out of it and weak in early November of 2006, when I wrote, “Killing Me Softly With His Song” that I thought he’d never recover. I’ve been very lucky. He somehow hangs on. He’s been doing better since I had his birthday parties in November and Christmas parties in December. But even when he didn’t know what was going on, I still gave him a bath, I still changed his diapers, I still fed him nutritious food and I still loved him. He wasn’t any less a person because he couldn’t do things or because he didn’t know what was going on. Never. I always tried to make him feel good about who he was, regardless of what his body could or couldn’t do. I learned to admire him for being a healthy, well adjusted young man, despite his disabilities. I wish I were as confident as he is some days and I have a lot of abilities.
I realize that caring for severely disabled children is difficult, but this case is not about these issues. The real issues are that we do a lousy job as a society in caring for these children. But no one wants to talk about that. And that will never lead to the change we need. I’ll still have to take home Dear Son to change his diaper when we are out. And that is just the tip of the iceberg on the real issues we face.
P.S. *As a reminder, don’t forget to vote for me at the 2006 Medical Weblog Awards under “Best Patient Blog”. You can vote here. Just click on, “Dream Mom” and hit the “vote” button. Polls are open from January 3, 2007 through January 14th. Thank you.
Friday, January 12, 2007
"Paula Zahn Now" Tonight's Show features Dream Mom and Dear Son
The Paula Zahn Now show on CNN will have a follow up to the "Ashley Treatment". Per CNN: "The controversy continues over a disabled girl whose parents had her growth stunted intentionally - so they could keep her at home. Paula's bringing everything "Out in the Open." Tune in Friday at 8 p.m. ET on "Paula Zahn Now"."
CNN's Medical Correspondent, Elizabeth Cohen, contacted me and did a phone interview on Tuesday morning and requested a full story interview on Wednesday. The crew flew in from Atlanta and we filmed for six hours on Wednesday. It was a lot of fun and they couldn't have been nicer. Some highlights you may have an interest in:
• Dear Son totally loved the camera. There is one scene where he's in the car and we are driving over to the swing and he's very excited. The camera man leans in the back window to film him and he leans into the camera, grining ear to ear, giving his best "Hollywood" smile.
• The closing segment should be the swing, which Dear Son loves, that is located at the apartment clubhouse grounds, which is located on a golf course. The "swing" is the same one I wrote about a few months back.
• The day went fast. The crew was professional, excellent and personable.
• You'll see the new "tilt" wheelchair that he received in November.
• You'll see me sweating and exhausted from the lifting but passionate about my love for Dear Son.
• Becca comments frequently on my blog and I quoted her with regards to her statement here, as it relates to putting children in a home.
And finally, I am thankful for the opportunity to talk about something that I am passionate about. I never imagined in my wildest dreams that blogging about Dear Son would lead to this. I have lived the life and hold a special place in my heart for Dear Son and children like him. I know this is a topic we may not all agree with, but I am thankful that through blogging, stories like Ashley and Dear Son are able to be heard. Each one of us has a story and today it's our turn to share what we've learned. I am fortunate to have a son who has taught me so much.
Thank you Elizabeth, Jen and the staff at CNN for allowing us to share our lives. And as always, thank you for your interest in Dear Son.
P.S. *As a reminder, don’t forget to vote for me at the 2006 Medical Weblog Awards under “Best Patient Blog”. You can vote here. Just click on, “Dream Mom” and hit the “vote” button. Polls are open from January 3, 2007 through January 14th. Thank you.
CNN's Medical Correspondent, Elizabeth Cohen, contacted me and did a phone interview on Tuesday morning and requested a full story interview on Wednesday. The crew flew in from Atlanta and we filmed for six hours on Wednesday. It was a lot of fun and they couldn't have been nicer. Some highlights you may have an interest in:
• Dear Son totally loved the camera. There is one scene where he's in the car and we are driving over to the swing and he's very excited. The camera man leans in the back window to film him and he leans into the camera, grining ear to ear, giving his best "Hollywood" smile.
• The closing segment should be the swing, which Dear Son loves, that is located at the apartment clubhouse grounds, which is located on a golf course. The "swing" is the same one I wrote about a few months back.
• The day went fast. The crew was professional, excellent and personable.
• You'll see the new "tilt" wheelchair that he received in November.
• You'll see me sweating and exhausted from the lifting but passionate about my love for Dear Son.
• Becca comments frequently on my blog and I quoted her with regards to her statement here, as it relates to putting children in a home.
And finally, I am thankful for the opportunity to talk about something that I am passionate about. I never imagined in my wildest dreams that blogging about Dear Son would lead to this. I have lived the life and hold a special place in my heart for Dear Son and children like him. I know this is a topic we may not all agree with, but I am thankful that through blogging, stories like Ashley and Dear Son are able to be heard. Each one of us has a story and today it's our turn to share what we've learned. I am fortunate to have a son who has taught me so much.
Thank you Elizabeth, Jen and the staff at CNN for allowing us to share our lives. And as always, thank you for your interest in Dear Son.
P.S. *As a reminder, don’t forget to vote for me at the 2006 Medical Weblog Awards under “Best Patient Blog”. You can vote here. Just click on, “Dream Mom” and hit the “vote” button. Polls are open from January 3, 2007 through January 14th. Thank you.
Thursday, January 11, 2007
If Ashley Could Just Talk, I Wonder What She’d Say…
If Ashley could just talk,
I wonder what she’d say,
Would she say, “Come on, Dad”,
“You need to let me be.”
If Ashley could just walk,
I wonder what she’d do,
Would she say, “Please don’t Momma”,
“I just wanted to be like you.”
If Ashley could just grow,
I wonder what she’d do,
If her Mom let her be tall,
Like the other mother’s do.
But Ashley’s always silent,
Like a good little girl should be,
Because she is disabled,
She’s not like you or me.
And that’s why she’s their Angel,
All white, and pure and true,
Because she can never be,
Like either me or you.
I wonder what God thinks,
When Ashley prays to him at night,
If he takes his little Angel,
And tries to make it right.
I wonder what he thinks,
When the committee was in the room,
And all the brilliant minds said,
“Do whatever you want to do”.
I wonder if he’d thinks it’s right,
For them not to let her grow,
Or did he think it’s a-okay,
Since she will never know.
I wonder if God worries,
When all disabled children pray,
“Please don’t let my parents do this,
Because I can not run away.”
P.S. *As a reminder, don’t forget to vote for me at the 2006 Medical Weblog Awards under “Best Patient Blog”. You can vote here. Just click on, “Dream Mom” and hit the “vote” button. Polls are open from January 3, 2007 through January 14th. Thank you.
I wonder what she’d say,
Would she say, “Come on, Dad”,
“You need to let me be.”
If Ashley could just walk,
I wonder what she’d do,
Would she say, “Please don’t Momma”,
“I just wanted to be like you.”
If Ashley could just grow,
I wonder what she’d do,
If her Mom let her be tall,
Like the other mother’s do.
But Ashley’s always silent,
Like a good little girl should be,
Because she is disabled,
She’s not like you or me.
And that’s why she’s their Angel,
All white, and pure and true,
Because she can never be,
Like either me or you.
I wonder what God thinks,
When Ashley prays to him at night,
If he takes his little Angel,
And tries to make it right.
I wonder what he thinks,
When the committee was in the room,
And all the brilliant minds said,
“Do whatever you want to do”.
I wonder if he’d thinks it’s right,
For them not to let her grow,
Or did he think it’s a-okay,
Since she will never know.
I wonder if God worries,
When all disabled children pray,
“Please don’t let my parents do this,
Because I can not run away.”
P.S. *As a reminder, don’t forget to vote for me at the 2006 Medical Weblog Awards under “Best Patient Blog”. You can vote here. Just click on, “Dream Mom” and hit the “vote” button. Polls are open from January 3, 2007 through January 14th. Thank you.
Sunday, January 07, 2007
The Ashley Treatment Part II: You Could Be Next
If I thought I was disturbed over the Ashley Treatment when I wrote this post, I am even more disturbed now. What started as parents who claimed they did this to their daughter to improve her quality of life and not to make it easier for them to lift her, has turned into a national debate with people beginning to shift their thinking from, “Wow, who could do this?” to, “Yes, how can people lift someone that weight?” to, “I can understand how that’s a good solution to that problem.”
People have totally missed the point. The problem is that we don’t have enough services available and help to care for our children at home. That is the real issue behind this whole mess.
Furthermore, people have now had a day or so to think about this and seem to believe that it’s a viable option for caring with severely disabled children as they get older. What? I thought the real issue was about Ashley’s quality of life? Now, it’s about an alternative to lifting her. That seems to be a real concern from a lot of the blogs and forums that I have read. Many of the comments go something like this, “Yes, I know so and so they they are worried they won’t be able to lift her” or on a medical student’s blog, “I have a patient and her mother is worried about how she is going to lift her child”. Yes, it is difficult to lift these children but don’t we have better answers?
The segment of the population that I am not hearing much from are the physiatrists and physical therapists. Why aren’t they speaking out about alternatives to the lifting? And where are the federal lawmakers on this? Are they increasing funds for home based services fast enough to be of real assistance to these families? Is anyone mandating that we provide licensed daycare centers to help care for severely disabled children to take some of the burden off the parents? And what about the health insurance plans? Many have eliminated services such as private duty nursing which would help us parents get some sleep or help us with caretaking such as giving them a bath. And why are we decreasing physical, occupational and speech therapy visits under most health plans? And what about the Respite programs? Are we increasing funding there and do we have any training programs in place so we can find good, safe and trained workers? And what about Durable Medical Equipment limits? Our plan limits this to $2,000 per year. Dear Son’s wheelchair was almost $10,000 and I don’t have estimates yet for our hydrolic bath lift or the hospital bed. Where should we go? What should we do?
The only insurance that offers to pay for many of these items is Medicaid. Yes, many states have health insurance plans for special needs that cover items where the primary insurance leaves off (they do this for low income) however many of these plans don’t cover private duty nursing and don’t pay for diapers. If you can work full time this may not be an issue but without any daycare or resources, your options become limited real fast. Could you continue to work your full time job without any daycare or Respite workers available to care for your children? In most cases, the answer is no. And what if everyone didn't have daycare for their children? There would be a national outrage. But it's o.k. for us not to have this for the most severely affected children.
We need assistance to keep these children at home. I did some research a few years back and asked some questions and the estimate that I received was that it cost the state $30,000 a month to care for a child in a state home. Any of the programs that would be instituted to keep our children at home would be cheaper than that. We can’t allow people to think that stunting a child’s growth is an acceptable alternative to these problems.
The issues that we have with severely disabled children aren’t all that much different from the issues of the elderly who end up in nursing homes, unable to care for themselves. There are issues with lifting them, they need their diapers changed, their mental functioning is deteriorating and they can’t function independently. This being the case, I think we are opening a Pandora’s box here. If we begin to think these alternatives are acceptable for our severely disabled children, then I suppose it won’t be long before it’s an acceptable alternative for our elderly parents or even us? Just remember, we will all get old someday and there are a lot of illnesses that involve mental deterioration to the point where the elderly are acting like children. Will the new rules be when dementia sets in, you lose your basic rights? Or will it just be o.k because you are too far gone to know?
I think we need to get back to the real issue pretty fast. The real issue is we need better services and resources to care for our severely disabled children and those same resources need to be available for adults.
And finally, the "Ashley Treatment" is never o.k. Early on, I had a little test that I used to do when I was faced with a difficult decision with Dear Son. The test was this: if I could look him in the eye and tell him why I made the choice, and I felt good about it, then it was always the right decision. People are quick to think these kids don't get it, because their physical and mental abilities are so severe. They get it all right. Just look them in the eye.
P.S. You can read more about Dear Son here and here.
*As a reminder, don’t forget to vote for me at the 2006 Medical Weblog Awards under “Best Patient Blog”. You can vote here. Just click on, “Dream Mom” and hit the “vote” button. Polls are open from January 3, 2007 through January 14th. Thank you.
People have totally missed the point. The problem is that we don’t have enough services available and help to care for our children at home. That is the real issue behind this whole mess.
Furthermore, people have now had a day or so to think about this and seem to believe that it’s a viable option for caring with severely disabled children as they get older. What? I thought the real issue was about Ashley’s quality of life? Now, it’s about an alternative to lifting her. That seems to be a real concern from a lot of the blogs and forums that I have read. Many of the comments go something like this, “Yes, I know so and so they they are worried they won’t be able to lift her” or on a medical student’s blog, “I have a patient and her mother is worried about how she is going to lift her child”. Yes, it is difficult to lift these children but don’t we have better answers?
The segment of the population that I am not hearing much from are the physiatrists and physical therapists. Why aren’t they speaking out about alternatives to the lifting? And where are the federal lawmakers on this? Are they increasing funds for home based services fast enough to be of real assistance to these families? Is anyone mandating that we provide licensed daycare centers to help care for severely disabled children to take some of the burden off the parents? And what about the health insurance plans? Many have eliminated services such as private duty nursing which would help us parents get some sleep or help us with caretaking such as giving them a bath. And why are we decreasing physical, occupational and speech therapy visits under most health plans? And what about the Respite programs? Are we increasing funding there and do we have any training programs in place so we can find good, safe and trained workers? And what about Durable Medical Equipment limits? Our plan limits this to $2,000 per year. Dear Son’s wheelchair was almost $10,000 and I don’t have estimates yet for our hydrolic bath lift or the hospital bed. Where should we go? What should we do?
The only insurance that offers to pay for many of these items is Medicaid. Yes, many states have health insurance plans for special needs that cover items where the primary insurance leaves off (they do this for low income) however many of these plans don’t cover private duty nursing and don’t pay for diapers. If you can work full time this may not be an issue but without any daycare or resources, your options become limited real fast. Could you continue to work your full time job without any daycare or Respite workers available to care for your children? In most cases, the answer is no. And what if everyone didn't have daycare for their children? There would be a national outrage. But it's o.k. for us not to have this for the most severely affected children.
We need assistance to keep these children at home. I did some research a few years back and asked some questions and the estimate that I received was that it cost the state $30,000 a month to care for a child in a state home. Any of the programs that would be instituted to keep our children at home would be cheaper than that. We can’t allow people to think that stunting a child’s growth is an acceptable alternative to these problems.
The issues that we have with severely disabled children aren’t all that much different from the issues of the elderly who end up in nursing homes, unable to care for themselves. There are issues with lifting them, they need their diapers changed, their mental functioning is deteriorating and they can’t function independently. This being the case, I think we are opening a Pandora’s box here. If we begin to think these alternatives are acceptable for our severely disabled children, then I suppose it won’t be long before it’s an acceptable alternative for our elderly parents or even us? Just remember, we will all get old someday and there are a lot of illnesses that involve mental deterioration to the point where the elderly are acting like children. Will the new rules be when dementia sets in, you lose your basic rights? Or will it just be o.k because you are too far gone to know?
I think we need to get back to the real issue pretty fast. The real issue is we need better services and resources to care for our severely disabled children and those same resources need to be available for adults.
And finally, the "Ashley Treatment" is never o.k. Early on, I had a little test that I used to do when I was faced with a difficult decision with Dear Son. The test was this: if I could look him in the eye and tell him why I made the choice, and I felt good about it, then it was always the right decision. People are quick to think these kids don't get it, because their physical and mental abilities are so severe. They get it all right. Just look them in the eye.
P.S. You can read more about Dear Son here and here.
*As a reminder, don’t forget to vote for me at the 2006 Medical Weblog Awards under “Best Patient Blog”. You can vote here. Just click on, “Dream Mom” and hit the “vote” button. Polls are open from January 3, 2007 through January 14th. Thank you.
Friday, January 05, 2007
Pillow Talk-The Debate Over the Ashley Treatment
“About an hour into the movie, I am holding his hand and realize that his shorts are wet and he needs to be changed. I suddenly realize that while I brought his diapers, I would be unable to change him. The restroom, while it does have a handicapped stall, does not have a bench or any place to change Dear Son. While I could lie pads down on the washroom floor and change him there, I have the problem of not being able to dead lift his 140 pound body off the floor and back into the wheelchair. Therefore, I can not change him here and we must now leave the movie and go home. There isn’t another alternative. He won’t sit still with a wet diaper and I can’t expect him to sit another thirty minutes without being changed. We leave the movie. I am frustrated. What was supposed to be a fun time out had to be cut short because there weren’t adequate facilities to change him.
Life isn’t fair sometimes. I wonder how many times this same scenario repeats itself around the country. I wonder how many disabled kids don’t get to go to the movies because there aren’t facilities to change them. I wonder how many mothers take their other kids and leave the disabled child at home because there aren’t places to change them. I wonder why in the year of 2006, that we don’t have restrooms for everyone to use.”
This was an excerpt from a post I wrote earlier this year titled, "The Ant Bully” where I detailed how difficult it was to go to the movies because there wasn’t an adequate restroom to change Dear Son, a 5’9” 140 pound severely disabled teenager. What I didn’t know at the time, was that in Seattle, Washington, there was a radical new treatment that parents of a severely disabled daughter used that would have solved this issue. Instead of creating facilities to change severely disabled children, we could, well, keep them small buy giving them excessive hormones to reduce their physical and sexual maturity along with other surgeries to prevent the above situation. If this were done, then I could take Dear Son on more outings, he would have more fun and I could take him to any washroom to change him. And, here’s the best part, I wouldn’t have to put him in an institution and I could keep him at home. And no, this would not be to make my life easier, it would be to improve Dear Son’s quality of life. Problem solved!
This is ludicrous of course but is designed to illustrate just how ridiculous the logic is in the “Ashley Treatment”. (This story has been covered in multiple media outlets and you can read about it here.) As you know by now, this is the case of a couple who decided that if they could keep their daughter Ashley “small” that they could continue to delight in holding her in their arms, take her on more trips and she’ll have more exposure to social gatherings “in the family room, backyard, swing, walks, bathtub, etc.” Ashley is a nine year old girl that has static encephalopathy, a severe brain impairment and she can not walk, talk, keep her head up, roll over or sit up by herself. She is fed through a tube and they refer to her as their, “Pillow Angel” because she stays right on her pillow where they put her. (Dear Son’s abilities are identical to Ashley’s although his were caused by the ARX gene mutation.)
So they chose to give her a “growth attentuation” treatement, a radical treatment to keep her height at 4 feet 5 inches and her weight at 75 pounds. The treatment also included a hysterectomy, surgery to remove her breast buds and subsequent high doses of estrogen. They dub this treatment, “The Ashley Treatment”. Her parents think it’s a humane move and her father added, “People think it must have been a horribly difficult decision to have the treatment performed. It really wasn’t.”
According to the Chicago Tribune, the separate ethical issue is whether or not a severely disabled person’s life might be improved by having his or her growth impaired. The treatment was also discussed by Dr. Jeffrey Brosco, a pediatrician at the University of Miami, who was co-author with Dr. Chris Fuedtner, in an editorial criticizing the treatment in the October issue of the Archives of Pediatrics and Adolosecent Medicine. According to the Chicago Tribune, “Brosco and Feudtner wrote parents of severely disabled children could feel pressured to have their children undergo it, to avoid the future choice of whether to send the fully grown child to an institution”.
The parents have refused all media requests for interviews and chose instead to explain his position in their blog.
As the mother of a severely disabled teenage boy, I think they are totally missing the point. The parents go to great lengths to defend their choice for treatment arguing that it’s not to make their lives or the caregivers lives easier but rather, to allow their daughter to participate in more activities with the family and in social situations.
I think keeping their daughter small is a poor way of treating a bigger issue. The issue is not that we need to stunt the growth of all severely disabled children. Are their lives not hard enough? Have they not been through enough that to have “additonal” surgeries to remove any signs of maturation? I mean, what’s next, cutting off their legs and arms so they can roll over easier? Would that make it easier for Dear Son to swing, or to go to the bathroom at the movies?
The real issue is not whether we should begin to these treatments. The "Ashley Treatment" should start and end with Ashley. No severely disabled child should be subjected to that abuse.
I have trouble with the case for many reasons. As Dear Son’s mother, I consider myself his number one advocate. Because Dear Son can’t speak for himself or rather defend himself, I am very protective of him. Who is Ashely’s advocate? If it’s not her parents, who advocated for Ashley in this case?
I have great difficulty understanding how the medical profession could have argued either way that these treatment choices on the basis that her quality of life would be better if she were smaller. How did they go about discussing what items would in effect “quantify” a better life?
I can’t believe that stunting the physical and sexual maturation would be good for a person’s sense of self. Where was the child psychiatrist in this discussion?
What role did a school psychologist have in this discussion? Dear Son attends high school now and one of his favorite activities is when they take him in his wheelchair in the hallway and he gets to look at the high school girls. Dear Son is the same size as other high school boys and does the same things they do, look at pretty girls. But how would it be if he still looked like a little boy, sitting in the hallway? I can’t imagine how it will be for Ashley when she sits in junior high and high school and all of the other severely disabled kids in her classroom will be going through puberty and growing up. She will be the one that doesn’t grow and is small. How will she feel? One of the hallmarks of puberty is being like everyone else. Where will Ashley fit in when she’s an outcast with her peers? Is this really in Ashely’s best interest and Ashley’s best quality of life?
What happens at school? One of the goals of all special needs program is to help these children fit into society and to learn basic skills of daily living. Does keeping her small make her an outcast and assist people in treating her like a baby or a child? Is that in Ashley’s best interest?
And if the father was that interested in being able to lift his daughter, and giving her a better quality of life, why couldn’t he take up a weight lifting program? I am a single mother and I lift Dear Son who is 5’9” and weighs 150 pounds. If I recall, Ashley wasn’t expected to exceed 5’6” and 125 pounds. Wouldn’t that have been another alternative to the “Ashley Treatment”? I would think if he could lift her then she could go into the family room, on outings, get into the swing in the backyard, etc., all things that they felt would increase her quality of life providing they could lift her.
And finally, the real issues behind this case have nothing to do with Ashley herself. We do a lousy job as a society in taking care of these children and their parents/caregivers. The real issue is that it is a lot of work to care for children like her and children like Dear Son. We expect these families to care for these children twenty four hours a day without any help. We have inadequate Respite programs and a lack of qualified workers. We need to give parents a break. We have many health plans available and yet the trend is to eliminate private duty nursing.
We don’t have any daycare for disabled children; we have no after school programs for severely disabled children. We need to have daycare that is safe, reliable and good for our children; then as parents, we can work full time. We need to be able to save tax free for our own retirement and that of our severely disabled children. The rules can be simple. If you have a child that meets the requirements for SSI in terms of disabilities, you can save tax free in a 401(k) plan for your children. Hardship withdrawals would be allowed.
We don’t have public restrooms that allow you to change a teenage child or an adult who can not stand up. We don’t even have them at hospitals that treat these children and yet every facility has a care statement in the emergency room that says they treat their patients “with dignity”. We need to require that every medical facility and public place that gets federal funding have adequate rest rooms for every person, regardless of their physical ability so that they can be changed with dignity and they can have the quality of life that this surgery is designed to enhance.
We need to re-think our health plans. Many plans are limiting funds for durable medical equipment, limiting physical, occupational and speech therapy visits and eliminating private duty nursing. We need to expand our Home Based Services program along with our college savings plan and re-name them “continuing education plans”. This would allow us to save money for our special needs children to get additional physical, occupational and speech therapy they need to become semi-independent or independent adults, less reliant on government funding.
Finally, I understand more than anyone the challenges of caring for a severely disabled teenager but we need to meet our challenges head on, not stunt the growth of our children, to make them easier to care for under the guise it will give them a “higher” quality of life. That is just plain, barbaric. Until then, I’ll continue to buy my son his cargo pants, with the 34 inch inseam. I’ll continue to lift him into his wheelchair and bring him into the living room every day, so he can spend time with me and then lift him into his bed at night, gently placing his head on his pillow. And if Dear Son could talk, he’d tell you himself that the Ashley Treatment is just plain wrong. I’d call that, “pillow talk”.
P.S. *As a reminder, don’t forget to vote for me at the 2006 Medical Weblog Awards under “Best Patient Blog”. You can vote here. Just click on, “Dream Mom” and hit the “vote” button. Polls are open from January 3, 2007 through January 14th. Thank you.
Life isn’t fair sometimes. I wonder how many times this same scenario repeats itself around the country. I wonder how many disabled kids don’t get to go to the movies because there aren’t facilities to change them. I wonder how many mothers take their other kids and leave the disabled child at home because there aren’t places to change them. I wonder why in the year of 2006, that we don’t have restrooms for everyone to use.”
This was an excerpt from a post I wrote earlier this year titled, "The Ant Bully” where I detailed how difficult it was to go to the movies because there wasn’t an adequate restroom to change Dear Son, a 5’9” 140 pound severely disabled teenager. What I didn’t know at the time, was that in Seattle, Washington, there was a radical new treatment that parents of a severely disabled daughter used that would have solved this issue. Instead of creating facilities to change severely disabled children, we could, well, keep them small buy giving them excessive hormones to reduce their physical and sexual maturity along with other surgeries to prevent the above situation. If this were done, then I could take Dear Son on more outings, he would have more fun and I could take him to any washroom to change him. And, here’s the best part, I wouldn’t have to put him in an institution and I could keep him at home. And no, this would not be to make my life easier, it would be to improve Dear Son’s quality of life. Problem solved!
This is ludicrous of course but is designed to illustrate just how ridiculous the logic is in the “Ashley Treatment”. (This story has been covered in multiple media outlets and you can read about it here.) As you know by now, this is the case of a couple who decided that if they could keep their daughter Ashley “small” that they could continue to delight in holding her in their arms, take her on more trips and she’ll have more exposure to social gatherings “in the family room, backyard, swing, walks, bathtub, etc.” Ashley is a nine year old girl that has static encephalopathy, a severe brain impairment and she can not walk, talk, keep her head up, roll over or sit up by herself. She is fed through a tube and they refer to her as their, “Pillow Angel” because she stays right on her pillow where they put her. (Dear Son’s abilities are identical to Ashley’s although his were caused by the ARX gene mutation.)
So they chose to give her a “growth attentuation” treatement, a radical treatment to keep her height at 4 feet 5 inches and her weight at 75 pounds. The treatment also included a hysterectomy, surgery to remove her breast buds and subsequent high doses of estrogen. They dub this treatment, “The Ashley Treatment”. Her parents think it’s a humane move and her father added, “People think it must have been a horribly difficult decision to have the treatment performed. It really wasn’t.”
According to the Chicago Tribune, the separate ethical issue is whether or not a severely disabled person’s life might be improved by having his or her growth impaired. The treatment was also discussed by Dr. Jeffrey Brosco, a pediatrician at the University of Miami, who was co-author with Dr. Chris Fuedtner, in an editorial criticizing the treatment in the October issue of the Archives of Pediatrics and Adolosecent Medicine. According to the Chicago Tribune, “Brosco and Feudtner wrote parents of severely disabled children could feel pressured to have their children undergo it, to avoid the future choice of whether to send the fully grown child to an institution”.
The parents have refused all media requests for interviews and chose instead to explain his position in their blog.
As the mother of a severely disabled teenage boy, I think they are totally missing the point. The parents go to great lengths to defend their choice for treatment arguing that it’s not to make their lives or the caregivers lives easier but rather, to allow their daughter to participate in more activities with the family and in social situations.
I think keeping their daughter small is a poor way of treating a bigger issue. The issue is not that we need to stunt the growth of all severely disabled children. Are their lives not hard enough? Have they not been through enough that to have “additonal” surgeries to remove any signs of maturation? I mean, what’s next, cutting off their legs and arms so they can roll over easier? Would that make it easier for Dear Son to swing, or to go to the bathroom at the movies?
The real issue is not whether we should begin to these treatments. The "Ashley Treatment" should start and end with Ashley. No severely disabled child should be subjected to that abuse.
I have trouble with the case for many reasons. As Dear Son’s mother, I consider myself his number one advocate. Because Dear Son can’t speak for himself or rather defend himself, I am very protective of him. Who is Ashely’s advocate? If it’s not her parents, who advocated for Ashley in this case?
I have great difficulty understanding how the medical profession could have argued either way that these treatment choices on the basis that her quality of life would be better if she were smaller. How did they go about discussing what items would in effect “quantify” a better life?
I can’t believe that stunting the physical and sexual maturation would be good for a person’s sense of self. Where was the child psychiatrist in this discussion?
What role did a school psychologist have in this discussion? Dear Son attends high school now and one of his favorite activities is when they take him in his wheelchair in the hallway and he gets to look at the high school girls. Dear Son is the same size as other high school boys and does the same things they do, look at pretty girls. But how would it be if he still looked like a little boy, sitting in the hallway? I can’t imagine how it will be for Ashley when she sits in junior high and high school and all of the other severely disabled kids in her classroom will be going through puberty and growing up. She will be the one that doesn’t grow and is small. How will she feel? One of the hallmarks of puberty is being like everyone else. Where will Ashley fit in when she’s an outcast with her peers? Is this really in Ashely’s best interest and Ashley’s best quality of life?
What happens at school? One of the goals of all special needs program is to help these children fit into society and to learn basic skills of daily living. Does keeping her small make her an outcast and assist people in treating her like a baby or a child? Is that in Ashley’s best interest?
And if the father was that interested in being able to lift his daughter, and giving her a better quality of life, why couldn’t he take up a weight lifting program? I am a single mother and I lift Dear Son who is 5’9” and weighs 150 pounds. If I recall, Ashley wasn’t expected to exceed 5’6” and 125 pounds. Wouldn’t that have been another alternative to the “Ashley Treatment”? I would think if he could lift her then she could go into the family room, on outings, get into the swing in the backyard, etc., all things that they felt would increase her quality of life providing they could lift her.
And finally, the real issues behind this case have nothing to do with Ashley herself. We do a lousy job as a society in taking care of these children and their parents/caregivers. The real issue is that it is a lot of work to care for children like her and children like Dear Son. We expect these families to care for these children twenty four hours a day without any help. We have inadequate Respite programs and a lack of qualified workers. We need to give parents a break. We have many health plans available and yet the trend is to eliminate private duty nursing.
We don’t have any daycare for disabled children; we have no after school programs for severely disabled children. We need to have daycare that is safe, reliable and good for our children; then as parents, we can work full time. We need to be able to save tax free for our own retirement and that of our severely disabled children. The rules can be simple. If you have a child that meets the requirements for SSI in terms of disabilities, you can save tax free in a 401(k) plan for your children. Hardship withdrawals would be allowed.
We don’t have public restrooms that allow you to change a teenage child or an adult who can not stand up. We don’t even have them at hospitals that treat these children and yet every facility has a care statement in the emergency room that says they treat their patients “with dignity”. We need to require that every medical facility and public place that gets federal funding have adequate rest rooms for every person, regardless of their physical ability so that they can be changed with dignity and they can have the quality of life that this surgery is designed to enhance.
We need to re-think our health plans. Many plans are limiting funds for durable medical equipment, limiting physical, occupational and speech therapy visits and eliminating private duty nursing. We need to expand our Home Based Services program along with our college savings plan and re-name them “continuing education plans”. This would allow us to save money for our special needs children to get additional physical, occupational and speech therapy they need to become semi-independent or independent adults, less reliant on government funding.
Finally, I understand more than anyone the challenges of caring for a severely disabled teenager but we need to meet our challenges head on, not stunt the growth of our children, to make them easier to care for under the guise it will give them a “higher” quality of life. That is just plain, barbaric. Until then, I’ll continue to buy my son his cargo pants, with the 34 inch inseam. I’ll continue to lift him into his wheelchair and bring him into the living room every day, so he can spend time with me and then lift him into his bed at night, gently placing his head on his pillow. And if Dear Son could talk, he’d tell you himself that the Ashley Treatment is just plain wrong. I’d call that, “pillow talk”.
P.S. *As a reminder, don’t forget to vote for me at the 2006 Medical Weblog Awards under “Best Patient Blog”. You can vote here. Just click on, “Dream Mom” and hit the “vote” button. Polls are open from January 3, 2007 through January 14th. Thank you.
Thursday, January 04, 2007
"Dream Mom" Nominated for "Best Patient Blog" at the 2006 Medical Weblog Awards
"I was still sleeping when I heard his voice. At first, I couldn’t believe it. Was I still dreaming? It was the kind of voice that is forever embedded in your memory. It was soft, sweet and yet from the heart, the kind you never forget. Kind of like hearing a beautiful aria for the first time, the kind that sends chills down your spine. The kind where you desperately hope for an encore but it never comes. I waited quietly to see if I would hear it again, however it was not to be."
This was one of my first posts, when I started blogging, called, "Once Is Not Enough" where I describe hearing being awakened by hearing a word out of my son, the first time in many years. It was the start of many stories that I would come to write about Dear Son and still remains my favorite. Over time, I went on to write "The Hole" and some other stories and through it all, many people have responded with such beautiful comments.
I remember early last year, when I began reading all of these medical blogs. I started with Fat Doctor and loved her style and candor. I loved reading about her patient stories as well as her home life. From there, I went on to read Neonatal Doc. I found myself commenting on so many of his posts that I decided to write my own blog and hence Dream Mom began. I thought he did a wonderful job covering a lot of medical ethics issues; you can always count on a lively discussion. And who could forget the "moustache" post? And then there was OncRN. Her posts on death and dying were always touching and fascinating at the same time. I would hope I would be so lucky to have a nurse like her in my dying days. And then there is my all time favorite, "The Examining Room of Dr. Charles". I love reading his patient stories since he is a masterful writer. I remember thinking to myself, "if I could ever write as well as Dr. Charles", that would be amazing. I still think that. He always has a great story to tell but my all time favorite has to be the beer story that is here and who could forget the story of Mr. Black (too bad he removed this story but it will be a great addition to his next book!). Certainly, there are a lot of great blogs out there and I have only touched the surface.
Today, I am honored to be part of a wonderful group. I have been nominated for, "Best Patient Blog" in the 2006 Medical Weblog Awards. I am honored to be part of this group. Over the past year, when I started writing my blog, I started with the intent to share some stories about the love of my life, my Dear Son. I can't say that I had any real expectations at the time however I figured in the end, I would have all of the wonderful memories of him on paper that I could reflect on in the years to come. In the beginning, I wrote about other things as well, however most people seemed to respond the most to the posts about Dear Son. I have been blessed to have such a wonderful young man as my son and blessed again to have so many people who have taken an interest in him. I hope you have enjoyed many stories about him throughout the year and if you have, then I'd appreciate your vote.
The voting started yesterday and the polls will close on Sunday, January 14, 2007 at midnight PST. Voting for the awards will be open to all, but you will only be able to vote once and there is only one vote for each category from a particular IP address. The awards will be announced on January 19th, 2007.
If you have enjoyed my blog and reading stories about Dear Son, then you can vote for me here. I would be honored to have this title. And while you are there, be sure to check out some of the other categories and blogs as well as MedGadget's blog which you can find here.
Thank you.
This was one of my first posts, when I started blogging, called, "Once Is Not Enough" where I describe hearing being awakened by hearing a word out of my son, the first time in many years. It was the start of many stories that I would come to write about Dear Son and still remains my favorite. Over time, I went on to write "The Hole" and some other stories and through it all, many people have responded with such beautiful comments.
I remember early last year, when I began reading all of these medical blogs. I started with Fat Doctor and loved her style and candor. I loved reading about her patient stories as well as her home life. From there, I went on to read Neonatal Doc. I found myself commenting on so many of his posts that I decided to write my own blog and hence Dream Mom began. I thought he did a wonderful job covering a lot of medical ethics issues; you can always count on a lively discussion. And who could forget the "moustache" post? And then there was OncRN. Her posts on death and dying were always touching and fascinating at the same time. I would hope I would be so lucky to have a nurse like her in my dying days. And then there is my all time favorite, "The Examining Room of Dr. Charles". I love reading his patient stories since he is a masterful writer. I remember thinking to myself, "if I could ever write as well as Dr. Charles", that would be amazing. I still think that. He always has a great story to tell but my all time favorite has to be the beer story that is here and who could forget the story of Mr. Black (too bad he removed this story but it will be a great addition to his next book!). Certainly, there are a lot of great blogs out there and I have only touched the surface.
Today, I am honored to be part of a wonderful group. I have been nominated for, "Best Patient Blog" in the 2006 Medical Weblog Awards. I am honored to be part of this group. Over the past year, when I started writing my blog, I started with the intent to share some stories about the love of my life, my Dear Son. I can't say that I had any real expectations at the time however I figured in the end, I would have all of the wonderful memories of him on paper that I could reflect on in the years to come. In the beginning, I wrote about other things as well, however most people seemed to respond the most to the posts about Dear Son. I have been blessed to have such a wonderful young man as my son and blessed again to have so many people who have taken an interest in him. I hope you have enjoyed many stories about him throughout the year and if you have, then I'd appreciate your vote.
The voting started yesterday and the polls will close on Sunday, January 14, 2007 at midnight PST. Voting for the awards will be open to all, but you will only be able to vote once and there is only one vote for each category from a particular IP address. The awards will be announced on January 19th, 2007.
If you have enjoyed my blog and reading stories about Dear Son, then you can vote for me here. I would be honored to have this title. And while you are there, be sure to check out some of the other categories and blogs as well as MedGadget's blog which you can find here.
Thank you.
Tuesday, January 02, 2007
New Year, New You!
It’s about this time every year that you can’t open a newspaper or go to an internet site without tips about how to keep those New Year’s Resolutions. I, for one, was always big on New Year’s Resolutions, writing them down, and then checking them off again a year later, to see what percentage I completed. Over the years, I simplified them and finally broke them down into very measurable results along with monthly, weekly and daily tasks to meet my goal.
It’s also interesting to see how resolutions have revolved. Twenty years ago, a common New Year’s Resolution was to quit smoking; a common one today is to get more organized. I remember last year on Good Morning America, they were comparing New Year’s Resolutions. Robin Roberts' resolution was to get more organized, I think Diane Sawyer’s was to lose weight but most interesting was Charles Gibson resolution, to read more, as if he didn’t read enough already.
My New Year’s Resolution’s used to entail a very detailed Account Plan for my life. As a Senior Account Manager, I was required to have an Account Plan for each client. I decided I should write one for my own life, and had it all mapped out. As Dear Son’s illness progressed and his health worsened, it fell by the wayside. Not because I didn’t want these things but mainly because without the income of a full time job, many of the things I wanted to do both professionally and personally, were no longer attainable.
And that brings me to Dear Son. What on earth would his resolutions be? What are your resolutions when you aren’t able to do anything? Let’s see….no use of your arms, or your hands, you can’t walk, you can’t weight bear, you can’t roll over, you can’t eat food, you can’t operate a remote control and you are totally reliant on your mother or someone for your entire existence. Somehow, the thought of improving himself, is nothing more than a pipe dream. What do you do when it won’t and can’t get any better? What do you hope for?
I hope for many things for him. I was looking on Big Academic Medical Center’s website over the weekend for the press release on the new emergency room. In particular, I was excited because this new emergency room would have a place to change a teenager’s diaper. That’s what I was excited about. I had spoken with the Family Advocate many times over the last few years about things that were needed there. One of them was “medium” diapers. They only had large and small diapers for many years. If you weren’t a small, they gave you large which were so huge that all of the urine and stool leaked from them requiring multiple bed changes, plenty of nursing and aide staff, lots of sheets and changing pads. I explained multiple times how from an operations perspective this was a huge loss of time and money. It took over two years but he secured medium diapers for all of the pediatric patients.
The second thing I talked to him about a place to change Dear Son when I went to the ER or when I went for a pediatric office visit. I had been on an office visit at Big Academic Medical Center in December, and then had some labs done for Dear Son. During that time, he went to the bathroom and required changing. (At 150 pounds, Dear Son is too heavy for me to lie on the bathroom floor not because I can’t get him down there, but rather, I can’t pick him up. And that’s without discussing privacy issues or the fact that a teenage boy is in a woman’s restroom.) But while I was there, I asked to use one of the patient rooms to change him. Everyone was too busy and no one had one I could use. I was getting a little bit angry that here I was at a Level One trauma center and one of the best hospitals in the country and I couldn’t find one room in the entire facility where I could change his diaper. No one had any rooms “available” for me to change him. Dear Son’s total medical charges were in excess of $300k (before discounts) this year and yet, they don’t have a place for me to change him?
I had spoken with the Family Advocate many times on this issue and apparently, I wasn’t the only one who needed this. He assured me that one of the new features of the ER would be a place to change kids like Dear Son, who could not use the handicapped bathroom and who are too heavy to change on the bathroom floor. I have written many times in this blog on how I can not lift Dear Son on a bathroom floor and put him back in the wheelchair. The new ER will have just the place for him. I can’t wait to take a tour and see it.
I continued on through the press release where it said it was a “state of the art facility”. I wonder what exactly that means, from a patient perspective. Maybe it means that all children, regardless of their abilities, will have access to a washroom. Now if we can only get a place to change them in all pediatric medical facilities around the country, we would have it made, or at least, we’d be off to a great start. Now that’s a New Year’s Resolution, I’d like to see. Not one that changed life for one person, but one that changed things for a nation. Now that’s a legacy anyone could be proud of. Cheers!
It’s also interesting to see how resolutions have revolved. Twenty years ago, a common New Year’s Resolution was to quit smoking; a common one today is to get more organized. I remember last year on Good Morning America, they were comparing New Year’s Resolutions. Robin Roberts' resolution was to get more organized, I think Diane Sawyer’s was to lose weight but most interesting was Charles Gibson resolution, to read more, as if he didn’t read enough already.
My New Year’s Resolution’s used to entail a very detailed Account Plan for my life. As a Senior Account Manager, I was required to have an Account Plan for each client. I decided I should write one for my own life, and had it all mapped out. As Dear Son’s illness progressed and his health worsened, it fell by the wayside. Not because I didn’t want these things but mainly because without the income of a full time job, many of the things I wanted to do both professionally and personally, were no longer attainable.
And that brings me to Dear Son. What on earth would his resolutions be? What are your resolutions when you aren’t able to do anything? Let’s see….no use of your arms, or your hands, you can’t walk, you can’t weight bear, you can’t roll over, you can’t eat food, you can’t operate a remote control and you are totally reliant on your mother or someone for your entire existence. Somehow, the thought of improving himself, is nothing more than a pipe dream. What do you do when it won’t and can’t get any better? What do you hope for?
I hope for many things for him. I was looking on Big Academic Medical Center’s website over the weekend for the press release on the new emergency room. In particular, I was excited because this new emergency room would have a place to change a teenager’s diaper. That’s what I was excited about. I had spoken with the Family Advocate many times over the last few years about things that were needed there. One of them was “medium” diapers. They only had large and small diapers for many years. If you weren’t a small, they gave you large which were so huge that all of the urine and stool leaked from them requiring multiple bed changes, plenty of nursing and aide staff, lots of sheets and changing pads. I explained multiple times how from an operations perspective this was a huge loss of time and money. It took over two years but he secured medium diapers for all of the pediatric patients.
The second thing I talked to him about a place to change Dear Son when I went to the ER or when I went for a pediatric office visit. I had been on an office visit at Big Academic Medical Center in December, and then had some labs done for Dear Son. During that time, he went to the bathroom and required changing. (At 150 pounds, Dear Son is too heavy for me to lie on the bathroom floor not because I can’t get him down there, but rather, I can’t pick him up. And that’s without discussing privacy issues or the fact that a teenage boy is in a woman’s restroom.) But while I was there, I asked to use one of the patient rooms to change him. Everyone was too busy and no one had one I could use. I was getting a little bit angry that here I was at a Level One trauma center and one of the best hospitals in the country and I couldn’t find one room in the entire facility where I could change his diaper. No one had any rooms “available” for me to change him. Dear Son’s total medical charges were in excess of $300k (before discounts) this year and yet, they don’t have a place for me to change him?
I had spoken with the Family Advocate many times on this issue and apparently, I wasn’t the only one who needed this. He assured me that one of the new features of the ER would be a place to change kids like Dear Son, who could not use the handicapped bathroom and who are too heavy to change on the bathroom floor. I have written many times in this blog on how I can not lift Dear Son on a bathroom floor and put him back in the wheelchair. The new ER will have just the place for him. I can’t wait to take a tour and see it.
I continued on through the press release where it said it was a “state of the art facility”. I wonder what exactly that means, from a patient perspective. Maybe it means that all children, regardless of their abilities, will have access to a washroom. Now if we can only get a place to change them in all pediatric medical facilities around the country, we would have it made, or at least, we’d be off to a great start. Now that’s a New Year’s Resolution, I’d like to see. Not one that changed life for one person, but one that changed things for a nation. Now that’s a legacy anyone could be proud of. Cheers!
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