I was paging though the calendar they sent home from school. It was Thursday, the second day of school, and I had just learned that high school pictures would be taken tomorrow. That means, pictures that would be included in the yearbook. My mind quickly wandered back to my own freshman year and all of the yearbook photos, many of which I would rather forget.
I continued to page through the calendar: ACT Test on September 16th and college information night on September 21st . I wasn’t even through September and already this was getting hard for me. Pep Assembly and Homecoming Parade on October 5th followed by the Homecoming Dance on October 7th. I guess the good news was that I didn’t have to enter any of these dates on our home calendar, since Dear Son wouldn’t need to attend any of these. I might be able to live without the first two, but gosh, I’d love to see Dear Son all dressed up, taking some young woman to a dance. I wondered who he’d pick and what she would be like. I’d help him pick out a corsage for her and take umpteen pictures of course while Dad would be taking videos. October 18th, the Fall Choral Concert was at 7:30 p.m. I remember how nervous I was trying out for the Concert Choir in high school and how proud I was to make it. I loved singing and the Fall Choral Concert brought back good memories. Of all the songs I learned back then, there is one that I still sing to Dear Son. It’s, “Let Me Call You Sweetheart” with the words changed of course, to fit properly for Dear Son. I don’t think he’s ever heard the song, sung the way it was written, only my version sung to that tune.
Then came the big one, the one that got me. It was tucked in between some other events. It was the Driver’s Education Meeting. Dear Son would turn fifteen in November, just the age when he might be getting his permit and learning to drive with his Dad. His mother drives way too fast, so she would not be a good example, although I am proud to say, I don’t exceed the speed limit too often anymore. His Dad would be calm and helpful and teach Dear Son how to be a good driver and make the experience fun. He would be the perfect father for that.
Dear Son’s high school experience will not be like the other kids. Yes, he will be in the same place, but no where near the other kids. It’s kind of like being on opposite sides of the Golden Gate Bridge. Yes, you are on the bridge, but you are so far from the people on the other side, that the experience is not the same, it’s non existent. I remembered just a few weeks prior, after Dear Son’s MRSA pneumonia, when I dragged him to his graduation, that I would be thrilled if we made it to high school. And now that he was here, well, it was disappointing.
That was until Friday, when I walked into Dear Son’s classroom and was greeted by Patrick. Patrick, was the young man who rode the bus with Dear Son last year. The bus would pull up every afternoon and he would yell out, “Hi, Dear Son’s Mom!”. Patrick’s face would light up as I would ask him about his day, hoping to learn something about what Dear Son did, so we could talk about it when we went in the house. I asked Patrick, “How’s school going?” He looked me in the eye, smiled, and quickly corrected me. He said, “no, school, no school”, “high school”, “high school”. And indeed it was. He couldn’t be prouder. And neither could I. Thank you Patrick, for reminding me.
Tuesday, August 29, 2006
Sunday, August 27, 2006
The View from the Window
He sat at the window every day and watched. We couldn’t make out his face, but it was always there. We’d spend the summer playing softball, the neighborhood kids and I, every night after dinner. We’d play in the street most of the time and sometimes, we’d have races; but most of the time, we played ball.
I was thirteen when my father died. He died of a massive heart attack when he arrived home from a new job. My summer was empty until I signed up for Sugar League softball, as in 16 inch softball. Once I began to play, summer was never the same. I was an All Star from the start, hitting farther than nearly every girl, running faster than all of them and a pretty good first baseman at that. Any time I was near a baseball field, the feeling was the same, I’d always want to play. From time to time, there would be other games on the field, and they’d need another player. I’d always hang around watching, hoping they’d ask me to play. While I was waiting, I’d always have that burning desire to play, the adrenalin building up inside me, like water behind a dam, waiting to explode. And soon, they’d ask me if I wanted to play. I always said yes. I didn’t care who I played for, I just wanted to play and wanted to win. I never denied myself an opportunity to slide into base, sometimes it was necessary and sometimes it was not. It was always dramatic. I don’t think I ever went home with a clean uniform. After all, it was summer and it was softball season.
I think of these summers and think of Dear Son. He too, sits in front of the picture window at his father’s house. Sits in the rocker and watches the neighborhood kids play, and sometimes, even playing in the street. He watches them on their bikes, getting ice cream, getting in and out of the car from a movie or simply going to a baseball game with their uniform on and bat in their hand. He used to be able to sit and watch them on his knees while leaning against the front room wall, the window pushed up to clear his head, so his nose could press up firmly against the screen, as if he were trying to suck in every bit of a summer breeze. Today, he sits in the rocker, his head leaning against the window for support, so he doesn’t tip over. He sits there until he can’t support himself any longer, and his Dad lifts him up and carries him over to the sofa.
Sometimes, he sits outside in his rocker but the view is still the same, just a different spot. He’s closer to the action, if you want to call it that, but never close to being in the game. I often wonder what Dear Son is thinking as he watches these boys. I wonder if he imagines himself hitting home runs, as I often did, or wonder if he wishes he could be part of them, just once, and go along, even if just for the ride. I wonder how that experience would change him, if it would make him feel more like one of them, or just make him feel more like a man.
I remember flipping through the channels and catching bits and pieces of a show on TLC recently, about a rare form of dwarfism, where the children grow up extremely tiny and age really fast. Their bodies never reach four feet tall, full grown, and their faces are disfigured and aged far beyond their years. Their teeth were odd too and they looked more like misfits than human beings. In one episode, one of the kids, got his wish to play the drums in this band that he liked. He was so excited. He played with them and said he dreamed of being a rock star. This was about the furthest dream for him since he would never be rock star material, even if he could play really well. What struck me, was how this one event would forever change his life. For once, he got to be the star and do what he wanted, play the drums and pretend he “was” a rock star. It was a memory he would cherish the rest of his life. But what I remember most, was the look on his face. It was the most exciting thing that had ever happened to him in his entire life.
I thought back to Dear Son, sitting in the window. I wondered what one thing he would want, more than anything. I wished he could tell me and I wished I could make it come true. I think of how sad it is sometimes, to live life on the outside, always looking in, always wondering what it would be like, to be “in the game”. I wish just once, he could tell me.
I was thirteen when my father died. He died of a massive heart attack when he arrived home from a new job. My summer was empty until I signed up for Sugar League softball, as in 16 inch softball. Once I began to play, summer was never the same. I was an All Star from the start, hitting farther than nearly every girl, running faster than all of them and a pretty good first baseman at that. Any time I was near a baseball field, the feeling was the same, I’d always want to play. From time to time, there would be other games on the field, and they’d need another player. I’d always hang around watching, hoping they’d ask me to play. While I was waiting, I’d always have that burning desire to play, the adrenalin building up inside me, like water behind a dam, waiting to explode. And soon, they’d ask me if I wanted to play. I always said yes. I didn’t care who I played for, I just wanted to play and wanted to win. I never denied myself an opportunity to slide into base, sometimes it was necessary and sometimes it was not. It was always dramatic. I don’t think I ever went home with a clean uniform. After all, it was summer and it was softball season.
I think of these summers and think of Dear Son. He too, sits in front of the picture window at his father’s house. Sits in the rocker and watches the neighborhood kids play, and sometimes, even playing in the street. He watches them on their bikes, getting ice cream, getting in and out of the car from a movie or simply going to a baseball game with their uniform on and bat in their hand. He used to be able to sit and watch them on his knees while leaning against the front room wall, the window pushed up to clear his head, so his nose could press up firmly against the screen, as if he were trying to suck in every bit of a summer breeze. Today, he sits in the rocker, his head leaning against the window for support, so he doesn’t tip over. He sits there until he can’t support himself any longer, and his Dad lifts him up and carries him over to the sofa.
Sometimes, he sits outside in his rocker but the view is still the same, just a different spot. He’s closer to the action, if you want to call it that, but never close to being in the game. I often wonder what Dear Son is thinking as he watches these boys. I wonder if he imagines himself hitting home runs, as I often did, or wonder if he wishes he could be part of them, just once, and go along, even if just for the ride. I wonder how that experience would change him, if it would make him feel more like one of them, or just make him feel more like a man.
I remember flipping through the channels and catching bits and pieces of a show on TLC recently, about a rare form of dwarfism, where the children grow up extremely tiny and age really fast. Their bodies never reach four feet tall, full grown, and their faces are disfigured and aged far beyond their years. Their teeth were odd too and they looked more like misfits than human beings. In one episode, one of the kids, got his wish to play the drums in this band that he liked. He was so excited. He played with them and said he dreamed of being a rock star. This was about the furthest dream for him since he would never be rock star material, even if he could play really well. What struck me, was how this one event would forever change his life. For once, he got to be the star and do what he wanted, play the drums and pretend he “was” a rock star. It was a memory he would cherish the rest of his life. But what I remember most, was the look on his face. It was the most exciting thing that had ever happened to him in his entire life.
I thought back to Dear Son, sitting in the window. I wondered what one thing he would want, more than anything. I wished he could tell me and I wished I could make it come true. I think of how sad it is sometimes, to live life on the outside, always looking in, always wondering what it would be like, to be “in the game”. I wish just once, he could tell me.
Tuesday, August 22, 2006
The Surreal Life
*This post was inspired by Neonatal Doc’s post where he wondered what parents in this situation wanted to hear. I thought it might be interesting to talk about what was going through my mind those first few years after having Dear Son, who is severly retarded.
We had been preparing for Dear Son’s birth. We had taken the Lamaze classes which were weird in and of themselves. The room was ready and I was definitely ready to deliver this baby. We had wallpapered the room, my sister in law and I, in a white background with tiny green hearts; so tiny in fact, they looked like dots. The carpet had just been installed and the room was basically a frilly, girly white with a few brown bears tucked in for good measure, to make it look more “boyish”. I had passed all of my pregnancy tests with flying colors and other than having morning sickness for the whole nine months, it was really pretty uneventful.
I had contacted our insurance agent a week or two prior to Dear Son’s birth to make sure his life insurance policy would be started the day he was born. A simple phone call, the day he was born, would be all it would take. Everything was in perfect order.
The baby was gaining weight and the obstetrician wanted to do a c-section due to the baby’s large size. He was estimated at almost ten pounds, so he was in a hurry to get this done. Three days before Dear Son’s due date, they did a c-section. I was so disappointed. I had wanted a “natural” birth so bad. Dear Son was born weighing in at 8 pounds, 12 ounces and 21 inches tall. He developed breathing issues soon thereafter and seizures were noticed the first day. Shortly thereafter, he was transferred from Suburban Hospital to Big City Hospital were he remained for one week. It didn’t take long for problems to surface and at ten weeks old, we made our first visit to Big Academic Medical Center.
I had called our insurance agent and he said he would add Dear Son on as soon as we got home. Time flew by and Dear Son continued to have issues. By the time I arrived at our insurance agent’s office, Dear Son was deemed “uninsurable” since the data of his hospitalizations had already made it’s way into the Medical Information Bureau.
I remember distinctly the first few years of Dear Son’s life. Dear Son has issues from the day he was born. I don’t ever remember the conversation, if there was any, that things were going to be different. I do remember the conversations that I wanted to hear. I wanted to hear a diagnosis, I wanted to know what caused these issues, I wanted to know if I had any other children, if they would be like this, and more importantly, I needed to know what to do, how to care for a child like this. Up until a few years ago, we never had a diagnosis. We did have genetic counseling and I decided that I didn’t want to take the risk of having any other children that had “issues”.
I remember distinctly, going to the Easter Seals with Dear Son and looking carefully at the other parents of disabled children, or rather, at their other children, to see if they were disabled. More often than not, some of the other children didn’t suffer from the same affliction, but had other issues. I decided at that time, I wouldn’t take the chance of having any more children on the chance they would have some disabilities so I had my tubes tied. My reasons were very selfish at that time. I mean, having one disabled child was one thing, but having more than one, was well, overwhelming. What would people think? I thought perhaps our genes didn’t go well together and we should just quit where we were. I thought if we were this unlucky to have one disabled child, then what would make me think that we could beat the odds and have a “normal” child? I am not proud I thought like this, but that was exactly what was going through my head.
For the first few years, I would take Dear Son to his physical, occupational and speech therapy and wonder, “why me?” I felt woefully inadequate. Yes, I took good care of Dear Son and I loved and adored Dear Son, but I just figured if the Lord was picking some parents for Dear Son why wouldn’t he pick a physical therapist as his mother, or a special education teacher? Why would he pick me? I was a business person. I had no interest in Special Needs children. None. Period. It seemed like an odd match.
Those first few years were tough at times. There was never a firm diagnosis in the beginning, only a bundle of hospitalizations and doctor visits, like a never ending episode of ER. I think the thing I wanted most, was honesty and a straight answer instead of sugar coating things.
Every parent dreams of what their children will be like. Normally, as time goes on, you learn that your child doesn't always grow up to be the child that you "wanted" them to be. After all, if we could select the traits our children would have, there would be a lot of things we would wish for them. When you have a Special Needs child, you learn the things that they are "not" going to be on the first day of their life. That's a big adjustment. It's also difficult living in a world of people who "live" through their children. You forever live on the outside of such conversations that people have when they say, "I don't know how we are going to afford Harvard" or when your peers are talking about how they are going to afford certain things for their children. Over time, you learn that as parents, we all have unique challenges, and if you look real hard, you can find the things that you share in common versus the things that make your child different from the others.
In time, these things became less and less of an issue. I began to love and enjoy my son for who he was, not who I wanted him to be. I began to look at the world and his world differently. It challenged many of my beliefs. It was also a total mind shift away from who I was, always driving forward and trying to achieve as much as possible. There were no bragging rights here. My child was never going to be first in anything, ever. You can’t begin to imagine how difficult this would be. If you want to try to imagine what this would be like, then do this exercise, the next time you are at a party and parents start talking about their children. When they begin to speak, keep a mental note on how many parents brag about something their child did. Take special note on how other people respond with another story about their own child that tops that one. When you do this, you will begin to understand what it might be like. When you have a Special Needs child, there is nothing to brag about. Nothing. Ever.
But that’s only how it is when you are living in your world. Once you begin to see them for who they are, your life begins again. You start to look at things with a different perspective. You begin to see all of the wonderful things that they are and that they will be. You begin to see how they enrich you, and then your family, and then the community. Kind of like throwing a rock into the pond and seeing the waves flow out around it. You begin to see the beauty that radiates from within them. You learn to see the little things that they think are important and that you take for granted. You learn to see the beauty in the simple things. You learn patience. You learn gratitude. You are humbled. But most of all, you learn to be thankful. Thankful, for all that they are and all that you have become. That’s the difference. And nobody tells you that. You have to learn that, for yourself.
We had been preparing for Dear Son’s birth. We had taken the Lamaze classes which were weird in and of themselves. The room was ready and I was definitely ready to deliver this baby. We had wallpapered the room, my sister in law and I, in a white background with tiny green hearts; so tiny in fact, they looked like dots. The carpet had just been installed and the room was basically a frilly, girly white with a few brown bears tucked in for good measure, to make it look more “boyish”. I had passed all of my pregnancy tests with flying colors and other than having morning sickness for the whole nine months, it was really pretty uneventful.
I had contacted our insurance agent a week or two prior to Dear Son’s birth to make sure his life insurance policy would be started the day he was born. A simple phone call, the day he was born, would be all it would take. Everything was in perfect order.
The baby was gaining weight and the obstetrician wanted to do a c-section due to the baby’s large size. He was estimated at almost ten pounds, so he was in a hurry to get this done. Three days before Dear Son’s due date, they did a c-section. I was so disappointed. I had wanted a “natural” birth so bad. Dear Son was born weighing in at 8 pounds, 12 ounces and 21 inches tall. He developed breathing issues soon thereafter and seizures were noticed the first day. Shortly thereafter, he was transferred from Suburban Hospital to Big City Hospital were he remained for one week. It didn’t take long for problems to surface and at ten weeks old, we made our first visit to Big Academic Medical Center.
I had called our insurance agent and he said he would add Dear Son on as soon as we got home. Time flew by and Dear Son continued to have issues. By the time I arrived at our insurance agent’s office, Dear Son was deemed “uninsurable” since the data of his hospitalizations had already made it’s way into the Medical Information Bureau.
I remember distinctly the first few years of Dear Son’s life. Dear Son has issues from the day he was born. I don’t ever remember the conversation, if there was any, that things were going to be different. I do remember the conversations that I wanted to hear. I wanted to hear a diagnosis, I wanted to know what caused these issues, I wanted to know if I had any other children, if they would be like this, and more importantly, I needed to know what to do, how to care for a child like this. Up until a few years ago, we never had a diagnosis. We did have genetic counseling and I decided that I didn’t want to take the risk of having any other children that had “issues”.
I remember distinctly, going to the Easter Seals with Dear Son and looking carefully at the other parents of disabled children, or rather, at their other children, to see if they were disabled. More often than not, some of the other children didn’t suffer from the same affliction, but had other issues. I decided at that time, I wouldn’t take the chance of having any more children on the chance they would have some disabilities so I had my tubes tied. My reasons were very selfish at that time. I mean, having one disabled child was one thing, but having more than one, was well, overwhelming. What would people think? I thought perhaps our genes didn’t go well together and we should just quit where we were. I thought if we were this unlucky to have one disabled child, then what would make me think that we could beat the odds and have a “normal” child? I am not proud I thought like this, but that was exactly what was going through my head.
For the first few years, I would take Dear Son to his physical, occupational and speech therapy and wonder, “why me?” I felt woefully inadequate. Yes, I took good care of Dear Son and I loved and adored Dear Son, but I just figured if the Lord was picking some parents for Dear Son why wouldn’t he pick a physical therapist as his mother, or a special education teacher? Why would he pick me? I was a business person. I had no interest in Special Needs children. None. Period. It seemed like an odd match.
Those first few years were tough at times. There was never a firm diagnosis in the beginning, only a bundle of hospitalizations and doctor visits, like a never ending episode of ER. I think the thing I wanted most, was honesty and a straight answer instead of sugar coating things.
Every parent dreams of what their children will be like. Normally, as time goes on, you learn that your child doesn't always grow up to be the child that you "wanted" them to be. After all, if we could select the traits our children would have, there would be a lot of things we would wish for them. When you have a Special Needs child, you learn the things that they are "not" going to be on the first day of their life. That's a big adjustment. It's also difficult living in a world of people who "live" through their children. You forever live on the outside of such conversations that people have when they say, "I don't know how we are going to afford Harvard" or when your peers are talking about how they are going to afford certain things for their children. Over time, you learn that as parents, we all have unique challenges, and if you look real hard, you can find the things that you share in common versus the things that make your child different from the others.
In time, these things became less and less of an issue. I began to love and enjoy my son for who he was, not who I wanted him to be. I began to look at the world and his world differently. It challenged many of my beliefs. It was also a total mind shift away from who I was, always driving forward and trying to achieve as much as possible. There were no bragging rights here. My child was never going to be first in anything, ever. You can’t begin to imagine how difficult this would be. If you want to try to imagine what this would be like, then do this exercise, the next time you are at a party and parents start talking about their children. When they begin to speak, keep a mental note on how many parents brag about something their child did. Take special note on how other people respond with another story about their own child that tops that one. When you do this, you will begin to understand what it might be like. When you have a Special Needs child, there is nothing to brag about. Nothing. Ever.
But that’s only how it is when you are living in your world. Once you begin to see them for who they are, your life begins again. You start to look at things with a different perspective. You begin to see all of the wonderful things that they are and that they will be. You begin to see how they enrich you, and then your family, and then the community. Kind of like throwing a rock into the pond and seeing the waves flow out around it. You begin to see the beauty that radiates from within them. You learn to see the little things that they think are important and that you take for granted. You learn to see the beauty in the simple things. You learn patience. You learn gratitude. You are humbled. But most of all, you learn to be thankful. Thankful, for all that they are and all that you have become. That’s the difference. And nobody tells you that. You have to learn that, for yourself.
Monday, August 21, 2006
Break
My apologies for being gone these last few weeks. Things have taken longer than I expected. I have been extremely busy this month trying to get all of Dear Son's medical bills processed. I have several that are requiring many phone calls and additional paperwork in order to get them processed. I have a few more vendors that will require a fair amount of time to get them processed correctly. I had hoped to have all outstanding claims processed by month end. I am also in the process of completing the necessary paperwork to purchase many of the medical items that we have been leasing these past few months.
In addition, I have been very busy getting all of the required paperwork completed for Dear Son to attend high school, which starts on Wednesday. Since he is on a feeding tube and requires medication to be given at school, there are a host of things that need to be completed in order for those things to occur. All of this is in addition to working and taking care of Dear Son.
In the meantime, I haven't had time to locate another Respite sitter for Dear Son so I haven't had any time to myself to do such things as blogging, or the fun stuff. Once Dear Son starts school this week, I should be able to spend a little more time getting all of my paperwork completed so I can get back to blogging full time soon. In the meantime, I'll try to post every few days.
Dear Son has been doing o.k. lately. He's had more seizures but has not had any reoccurances of the MRSA pneumonia. We recently increased one of his medications to help with the seizures.
In addition, I have been very busy getting all of the required paperwork completed for Dear Son to attend high school, which starts on Wednesday. Since he is on a feeding tube and requires medication to be given at school, there are a host of things that need to be completed in order for those things to occur. All of this is in addition to working and taking care of Dear Son.
In the meantime, I haven't had time to locate another Respite sitter for Dear Son so I haven't had any time to myself to do such things as blogging, or the fun stuff. Once Dear Son starts school this week, I should be able to spend a little more time getting all of my paperwork completed so I can get back to blogging full time soon. In the meantime, I'll try to post every few days.
Dear Son has been doing o.k. lately. He's had more seizures but has not had any reoccurances of the MRSA pneumonia. We recently increased one of his medications to help with the seizures.
Wednesday, August 09, 2006
If you get a chance.....
check out this blog. This is the funniest blog I have read in a while. I clicked on it today and it had me laughing. Ruth is a quadriplegic and her blog name is, "That Blogging Wheelchair".
Here are some excerpts that got me laughing:
1) I'm Blogging This Here's what she said:
"I really should wear a T shirt that warns people that anything they say or do could wind up on one of my blogs. As far as I'm concerned, it's all material.
I also think this is a good thing to say to someone after they've done something stupid. Give them a look in the eye and say "I'm blogging this." Then leave.
"What?" they say, as they chase after you.
"Never mind."...." You'll have to read the rest of it yourself.
2)I Feel Sorry For People Who Walk Post where she describes the different type of walkers at a Starbucks.
3) The Accessible Lamp post where she talks about a new lamp she ordered.
I'll let you read the rest yourself.
Here are some excerpts that got me laughing:
1) I'm Blogging This Here's what she said:
"I really should wear a T shirt that warns people that anything they say or do could wind up on one of my blogs. As far as I'm concerned, it's all material.
I also think this is a good thing to say to someone after they've done something stupid. Give them a look in the eye and say "I'm blogging this." Then leave.
"What?" they say, as they chase after you.
"Never mind."...." You'll have to read the rest of it yourself.
2)I Feel Sorry For People Who Walk Post where she describes the different type of walkers at a Starbucks.
3) The Accessible Lamp post where she talks about a new lamp she ordered.
I'll let you read the rest yourself.
Tuesday, August 08, 2006
Pure Joy
I can remember the look on his face in the hot tub. It was pure joy. His eyes were sparkling, he was grinning ear to ear and he was totally relaxed. I can’t remember a time where I had seen him that happy. It was many years ago, when Dear Son was small, and we were staying at a hotel. It was the first time in a hot tub. We (my husband and I) had made the mistake of taking him into the hot tub first and instead should have taken him into the swimming pool. A mistake, because once Dear Son felt the warmth of that hot tub, there was no way he was going into the pool, which was a lot cooler by comparison.
I have been fortunate to see Dear Son quite happy over the years. Playing in the dirt hole at daycare, seeing him laughing like crazy at school with his friends in the classroom, and then remembering that face from the hot tub, the one that is pure joy, where Dear Son is beaming like a 100 carat diamond ring. I don’t think you ever forget your children’s faces, when they experience pure joy. The only thing you ever do, is to try to repeat those experiences as often as possible so you can see that beautiful face over and over again.
August is always a difficult month for me. It’s difficult because I rarely get a break from Dear Son. During the school year, I have a few minutes to myself to exercise once he gets on the school bus. After school ends in early June, summer school starts up and even though it’s only a half day, I still get to squeeze in a little time to myself. Summer school ends around the third week in July and then it gets a lot harder since I don’t get a break until he starts school at the end of August. His Dad has been coming over two days a week while I work, but that doesn’t really give me any time to myself. But there is something really good that happens. When I come home from work, Dear Son is thrilled to see me. Not happy to see me, not excited to see me, but absolutely, positively thrilled to see me. It’s that same look of pure joy I saw on his face in the hot tub. Make no mistake, his father is good to him and he enjoys spending time with him, but I am rarely away from Dear Son and he clearly misses me. It is by far the best part of my day, thinking about his face while I am driving home.
I am very lucky. I remind myself of how lucky I am to spend so much time with him. It isn’t very often that I get to sleep through the night without getting up to attend to him, roll him over or change a diaper. None of these are things you should be doing when your son is almost fifteen years old. Last night alone, I went to bed at 12:30 a.m., was up the first time at 2:30 a.m., then again at 3:30 to 4 and then he was up for the day by 4:45 a.m. I can usually manage pretty well except for the days when I am only asleep for an hour before he wakes up for the first time. Sometimes, okay maybe more, I actually pray that he won’t wake up so I can get some sleep.
Over the weekend, I happened to catch Troy Aikman’s Hall of Fame acceptance speech. The camera panned over to his wife and three daughters. I wondered how a super jock like that felt, not having a son to play sports with, and instead, having three daughters. I imagined the dreams he once had, of having a son. Towards the end of the speech, he talked about the tough times, when say, perhaps he had thrown an interception. He spoke about something Norv Turner, one of his coaches, used to say to him, at times like this, when times were tough. Norv would say, “Sometimes we have to remind ourselves that these are the jobs we've always dreamed of having.”
I have always wanted to be a mother. Specifically, I wanted to be married and have three sons, since my husband and I loved sports, especially football. I never imagined though, having a child like this, with so many disabilities. We want everything to be perfect, we want our first born to be normal and people make decisions based on the fact that their children aren’t perfect, but I have to wonder sometimes, if I would see this type of joy when I came home from work, if he were normal. You have to admit, I am one lucky woman.
I have been fortunate to see Dear Son quite happy over the years. Playing in the dirt hole at daycare, seeing him laughing like crazy at school with his friends in the classroom, and then remembering that face from the hot tub, the one that is pure joy, where Dear Son is beaming like a 100 carat diamond ring. I don’t think you ever forget your children’s faces, when they experience pure joy. The only thing you ever do, is to try to repeat those experiences as often as possible so you can see that beautiful face over and over again.
August is always a difficult month for me. It’s difficult because I rarely get a break from Dear Son. During the school year, I have a few minutes to myself to exercise once he gets on the school bus. After school ends in early June, summer school starts up and even though it’s only a half day, I still get to squeeze in a little time to myself. Summer school ends around the third week in July and then it gets a lot harder since I don’t get a break until he starts school at the end of August. His Dad has been coming over two days a week while I work, but that doesn’t really give me any time to myself. But there is something really good that happens. When I come home from work, Dear Son is thrilled to see me. Not happy to see me, not excited to see me, but absolutely, positively thrilled to see me. It’s that same look of pure joy I saw on his face in the hot tub. Make no mistake, his father is good to him and he enjoys spending time with him, but I am rarely away from Dear Son and he clearly misses me. It is by far the best part of my day, thinking about his face while I am driving home.
I am very lucky. I remind myself of how lucky I am to spend so much time with him. It isn’t very often that I get to sleep through the night without getting up to attend to him, roll him over or change a diaper. None of these are things you should be doing when your son is almost fifteen years old. Last night alone, I went to bed at 12:30 a.m., was up the first time at 2:30 a.m., then again at 3:30 to 4 and then he was up for the day by 4:45 a.m. I can usually manage pretty well except for the days when I am only asleep for an hour before he wakes up for the first time. Sometimes, okay maybe more, I actually pray that he won’t wake up so I can get some sleep.
Over the weekend, I happened to catch Troy Aikman’s Hall of Fame acceptance speech. The camera panned over to his wife and three daughters. I wondered how a super jock like that felt, not having a son to play sports with, and instead, having three daughters. I imagined the dreams he once had, of having a son. Towards the end of the speech, he talked about the tough times, when say, perhaps he had thrown an interception. He spoke about something Norv Turner, one of his coaches, used to say to him, at times like this, when times were tough. Norv would say, “Sometimes we have to remind ourselves that these are the jobs we've always dreamed of having.”
I have always wanted to be a mother. Specifically, I wanted to be married and have three sons, since my husband and I loved sports, especially football. I never imagined though, having a child like this, with so many disabilities. We want everything to be perfect, we want our first born to be normal and people make decisions based on the fact that their children aren’t perfect, but I have to wonder sometimes, if I would see this type of joy when I came home from work, if he were normal. You have to admit, I am one lucky woman.
Sunday, August 06, 2006
Green Envy
Dear Son was three years old when he got his first wheelchair. It was 5:45 p.m. and I had gone to the wheelchair vendor to pick it up and bring it home. It was late, close to closing time and the vendor gave me a crash course in how to put it together and take it apart. The wheelchair, was a dark green metallic and black seating. Basically, there was a lot of black and not much color. I chose the color because I definitely didn’t want black, too morbid for children, I thought.
I took it out to the car. You had to break it down (take it apart) to get it into the trunk and I was having trouble already. It all seemed a little bit foreign to me and the last thing I really wanted to learn was how to assemble a wheelchair. Never in my wildest dreams, had I imagined a wheelchair. Frustrated, I set the wheelchair upright in the trunk and tied the trunk down. I was not off to a good start.
The rain began soon after. Not only was the wheelchair getting wet, but the trunk was as well. The wheelchair seat was a black fabric, that would have to be washed and then dried, before he could use it. Tears began to stream down my face; I was so frustrated trying to put this thing together. How was it ever going to work?
We arrived home. The wheelchair, sat in my kitchen like a big black hole. It was the ugliest thing you could imagine, a big dark depressing hole right in the center of my kitchen. Why couldn’t they make these things more beautiful or even cheery for the kids?
The next few days didn’t seem much better. I tried sitting Dear Son in the wheelchair, properly as I should, with his feet strapped in for support, along with the strap over his hips and the one across his chest. All of the straps seemed so confining to me, like you were strapping him in an electric chair. Worse yet, was the fact that he couldn’t do anything in the chair but sit. I decided very quickly that this was not the life I imagined for Dear Son. I don’t know what is normal, I don’t know how people use these chairs, but to have a three year old sit in a wheelchair like a vegetable, was not my idea of a good time. I wanted things to be less restrictive, not more confining and I removed him from the chair.
The chair was used only for school, feeding, transportation and our daily walks on the Riverwalk. I rarely if ever used the chair in the house. Instead, Dear Son would play in his ball pit, where he would sometime fall asleep. We had a triple French door that looked out into our back yard and out to the pond. I would open the center door and Dear Son would lie there with his head on his Barney and look out at the pond, listening to the sound of the water drop from the aerator. Soon he would fall asleep. Anything was better than the wheelchair, at least he was living and enjoying life.
I had a special rule though, that I would never take pictures of Dear Son in his wheelchair. Whenever I would view a picture of a person in a wheelchair, I always saw the disability and never the child. This is not to say I don’t have any pictures of him in his wheelchair, but I “rarely” took them of him in his chair. I had to get pretty creative over the years, always trying to find something with some back support so he wouldn’t fall over, but it was definitely doable.
The wheelchair lasted for many years and soon Dear Son outgrew it. This time, I chose a candy apple red metallic for Dear Son’s chair. By this time, they had made some advancements in the chair, and you could get them to fold together so you could put it in the trunk of your car. The cost of this chair was $9,500, all of the customizations that were required to support him definitely added to the cost. I bought him a red down jacket for the winter to match his chair and the color seemed to capture Dear Son’s essence.
Earlier this year, we had to order a new wheelchair. Dear Son had deteriorated significantly and his current chair no longer supported him. He required a new “tilt” wheelchair, that I wrote about here. The tilt feature would make it easier for Dear Son to sit up, since you could tilt him back and allow better support to keep his airways open. After many months, both insurance companies approved the new chair. It was almost a done deal, until last week.
The new chair would require a fitting. In addition to the fitting, I had to select a new color for the wheelchair. I checked the brochure and went on-line to the website to see the new colors. I was trying to select a color that I thought would be appropriate for “high school”. I decided on a sapphire blue metallic. This color reminded me of the color of a Jaguar XJ8 that I liked many years ago. It would also complement Dear Son’s leg braces with the NFL logo on them in our home team’s colors of navy and orange. It was all a done deal.
At the fitting, I asked for the sample metal chips so I could see the color in person. The color was nothing like the brochure or the web site. Actually, it was the ugliest color I had ever seen. It was a dark blue with some silver glitter tossed on it. It looked way too girly for Dear Son. I went through all of the paint chips and none of them appealed to me. All very old and odd colors. It was like selecting a paint color for your new car using 1970 paint chips. In the end, I picked a color called, “Apple Green Metallic”. It is nothing close to an apple green but rather a sage green. It was the best I could do providing I didn’t want black. I really don’t feel too good about the color selection but there weren’t any great colors. If I were working full time, I would have the chair re-painted in that sapphire blue metallic by a custom car shop. But since I work part time, I’ll have to live with it.
Wheelchairs are boring which got me thinking about what they could do to make them more interesting, if cost weren’t an option of course. I think I would like to see more chrome on the wheels, to make it more like a car. It would be cool if the wheels maybe lit up with words on them, like the wheels featured on the HGTV show, “I Want That”. You can program messages into the wheels and then when Dear Son comes up, his wheels on his chair would flash, “hi” in lights and he could talk to people.
Or how about a line of NFL or NBA wheelchairs? These wheelchair would come in the colors of the NFL or NBA teams with perhaps an autographed signature across the headrest of a current favorite player or Hall of Fame player. How cool would that be? Maybe it could come with an autographed picture of the player too. Kind of like a whole package. Wouldn’t that be something for the boys at school to talk about. Gee, Dear Son, you have an autographed headrest by Michael Jordan! Or what about a Michael Jordan wheelchair that comes with a pair of Air Jordans? Certainly some disabled kids may not know who these players are, but they do recognize and love the attention from their peers. At the very least, I’d love to see NFL logos that could be printed on the chairs or even the headrest to customize the chairs.
I would also love to see a wheelchair that could convert to a bed/cot. This way, is the child needed to be changed in a washroom, you could just fold the chair back into a bench position and change them without lifting them out of the chair.
A wheelchair that could convert to a stander by remote control would be great too. Then Dear Son could stand and look people in the eye when he meets them. There is a big difference looking someone in the eye than having someone look down at you. I read recently that there is a saying that when you should, "Look straight into a person's eyes when you talk to them, especially if they are disabled. That way they know you are actually communicating with them, not pitying them." A wheelchair that allows them to stand would make a big difference since they could look them straight in the eye.
I would love to see custom backpacks designed to fit on the wheelchairs that were customized to match the paint on the wheelchairs.
I would like to see accessories that could be purchased to go with your chair-perhaps customized lunch boxes, back packs, diaper packs, etc. that would attach to the chair. Or even, some fabric options to match your own home. The vendor gives you the fabric measurements and you bring in the fabric for your chair. The vendor’s seamstress then cuts and makes the fabric for your chair.
The bottom line is that I’d like them to be more personal, so that they would give kids something to talk to these kids about their chairs. It would also help other people see the kid’s personality and not their disability.
I took it out to the car. You had to break it down (take it apart) to get it into the trunk and I was having trouble already. It all seemed a little bit foreign to me and the last thing I really wanted to learn was how to assemble a wheelchair. Never in my wildest dreams, had I imagined a wheelchair. Frustrated, I set the wheelchair upright in the trunk and tied the trunk down. I was not off to a good start.
The rain began soon after. Not only was the wheelchair getting wet, but the trunk was as well. The wheelchair seat was a black fabric, that would have to be washed and then dried, before he could use it. Tears began to stream down my face; I was so frustrated trying to put this thing together. How was it ever going to work?
We arrived home. The wheelchair, sat in my kitchen like a big black hole. It was the ugliest thing you could imagine, a big dark depressing hole right in the center of my kitchen. Why couldn’t they make these things more beautiful or even cheery for the kids?
The next few days didn’t seem much better. I tried sitting Dear Son in the wheelchair, properly as I should, with his feet strapped in for support, along with the strap over his hips and the one across his chest. All of the straps seemed so confining to me, like you were strapping him in an electric chair. Worse yet, was the fact that he couldn’t do anything in the chair but sit. I decided very quickly that this was not the life I imagined for Dear Son. I don’t know what is normal, I don’t know how people use these chairs, but to have a three year old sit in a wheelchair like a vegetable, was not my idea of a good time. I wanted things to be less restrictive, not more confining and I removed him from the chair.
The chair was used only for school, feeding, transportation and our daily walks on the Riverwalk. I rarely if ever used the chair in the house. Instead, Dear Son would play in his ball pit, where he would sometime fall asleep. We had a triple French door that looked out into our back yard and out to the pond. I would open the center door and Dear Son would lie there with his head on his Barney and look out at the pond, listening to the sound of the water drop from the aerator. Soon he would fall asleep. Anything was better than the wheelchair, at least he was living and enjoying life.
I had a special rule though, that I would never take pictures of Dear Son in his wheelchair. Whenever I would view a picture of a person in a wheelchair, I always saw the disability and never the child. This is not to say I don’t have any pictures of him in his wheelchair, but I “rarely” took them of him in his chair. I had to get pretty creative over the years, always trying to find something with some back support so he wouldn’t fall over, but it was definitely doable.
The wheelchair lasted for many years and soon Dear Son outgrew it. This time, I chose a candy apple red metallic for Dear Son’s chair. By this time, they had made some advancements in the chair, and you could get them to fold together so you could put it in the trunk of your car. The cost of this chair was $9,500, all of the customizations that were required to support him definitely added to the cost. I bought him a red down jacket for the winter to match his chair and the color seemed to capture Dear Son’s essence.
Earlier this year, we had to order a new wheelchair. Dear Son had deteriorated significantly and his current chair no longer supported him. He required a new “tilt” wheelchair, that I wrote about here. The tilt feature would make it easier for Dear Son to sit up, since you could tilt him back and allow better support to keep his airways open. After many months, both insurance companies approved the new chair. It was almost a done deal, until last week.
The new chair would require a fitting. In addition to the fitting, I had to select a new color for the wheelchair. I checked the brochure and went on-line to the website to see the new colors. I was trying to select a color that I thought would be appropriate for “high school”. I decided on a sapphire blue metallic. This color reminded me of the color of a Jaguar XJ8 that I liked many years ago. It would also complement Dear Son’s leg braces with the NFL logo on them in our home team’s colors of navy and orange. It was all a done deal.
At the fitting, I asked for the sample metal chips so I could see the color in person. The color was nothing like the brochure or the web site. Actually, it was the ugliest color I had ever seen. It was a dark blue with some silver glitter tossed on it. It looked way too girly for Dear Son. I went through all of the paint chips and none of them appealed to me. All very old and odd colors. It was like selecting a paint color for your new car using 1970 paint chips. In the end, I picked a color called, “Apple Green Metallic”. It is nothing close to an apple green but rather a sage green. It was the best I could do providing I didn’t want black. I really don’t feel too good about the color selection but there weren’t any great colors. If I were working full time, I would have the chair re-painted in that sapphire blue metallic by a custom car shop. But since I work part time, I’ll have to live with it.
Wheelchairs are boring which got me thinking about what they could do to make them more interesting, if cost weren’t an option of course. I think I would like to see more chrome on the wheels, to make it more like a car. It would be cool if the wheels maybe lit up with words on them, like the wheels featured on the HGTV show, “I Want That”. You can program messages into the wheels and then when Dear Son comes up, his wheels on his chair would flash, “hi” in lights and he could talk to people.
Or how about a line of NFL or NBA wheelchairs? These wheelchair would come in the colors of the NFL or NBA teams with perhaps an autographed signature across the headrest of a current favorite player or Hall of Fame player. How cool would that be? Maybe it could come with an autographed picture of the player too. Kind of like a whole package. Wouldn’t that be something for the boys at school to talk about. Gee, Dear Son, you have an autographed headrest by Michael Jordan! Or what about a Michael Jordan wheelchair that comes with a pair of Air Jordans? Certainly some disabled kids may not know who these players are, but they do recognize and love the attention from their peers. At the very least, I’d love to see NFL logos that could be printed on the chairs or even the headrest to customize the chairs.
I would also love to see a wheelchair that could convert to a bed/cot. This way, is the child needed to be changed in a washroom, you could just fold the chair back into a bench position and change them without lifting them out of the chair.
A wheelchair that could convert to a stander by remote control would be great too. Then Dear Son could stand and look people in the eye when he meets them. There is a big difference looking someone in the eye than having someone look down at you. I read recently that there is a saying that when you should, "Look straight into a person's eyes when you talk to them, especially if they are disabled. That way they know you are actually communicating with them, not pitying them." A wheelchair that allows them to stand would make a big difference since they could look them straight in the eye.
I would love to see custom backpacks designed to fit on the wheelchairs that were customized to match the paint on the wheelchairs.
I would like to see accessories that could be purchased to go with your chair-perhaps customized lunch boxes, back packs, diaper packs, etc. that would attach to the chair. Or even, some fabric options to match your own home. The vendor gives you the fabric measurements and you bring in the fabric for your chair. The vendor’s seamstress then cuts and makes the fabric for your chair.
The bottom line is that I’d like them to be more personal, so that they would give kids something to talk to these kids about their chairs. It would also help other people see the kid’s personality and not their disability.
Wednesday, August 02, 2006
The Ant Bully
Dear Son was in the middle of his g tube feeding and was getting bored. His feeding, typically takes two hours in the morning and almost three hours at lunch and dinner. He takes his feeding most of the time lying on his bed and in the afternoon, in his tent, which he loves. He was an hour into the feeding and began kicking the wall letting me know he was bored. At almost fifteen, and unable to sit, our options for passing the time are few. I decided to get him out of the house and proposed we go to the movies. Delighted, he stopped kicking the wall and I chose a movie, the Ant Bully. With nearly 100 degree heat, the movies would be an excellent choice to pass the time. The hard part, would be all of the lifts, lifting him into the wheelchair, then into the car, then into the wheelchair to get into the theater and then repeating that whole process again to come home. At nearly 140 pounds, it takes a lot of my energy. In addition, I make sure he has all his meds, has finished his feeding, change his diaper and packed some diapers in case he needed to be changed. Dear Son was so excited.
We get to the movie theatre and it’s wonderful. This theatre is great for wheelchairs. The first row on the main floor, in the center of the theatre, has a few seats and then some of the seats have been removed which leaves lots of space for a wheelchair. You can actually sit next to someone in a wheelchair as opposed to having them sit in a different row, which is frequently the case.
The Ant Bully begins. It’s a wonderful movie that centers around ten year old Lucas Nickle, who had recently moved to a new city with his family and he’s definitely not having any fun-he doesn’t have any friends, his big sister ignores him and his parents are occupied with their upcoming vacation in Mexico. Lucas, a nerd, quickly becomes the victim of the neighborhood bully Steve. Steve, constantly picks on Lucas, pulling him up by his underwear until the elastic breaks and he falls to the ground. Lucas, also known as Peanut, is frequently terrorized by Steve and soon begins his displacement of aggression by taking out his frustrations on the ant holes in his yard. He proceeds to stomp on them and squirting them with the garden hose.
Little does Lucas know but there is a whole world alive beneath the ground in his yard, and the ants view Lucas as a threat to their safety and begin fighting back. In the ant world, he is known as Lucas the Destroyer and Zoc, the Ant Wizard (voice of Nicholas Cage), creates a formula that shrinks Lucas to the size on an insect. Lucas awakens to find himself a prisoner of the ants. The tiny boy is then brought before the leader of the Ant Colony to answer for his crimes against the ant. Showing compassion, the Queen of the Colony (voice of Meryl Streep) sentences Lucas not to death, but to live among them and see how difficult their circumstances can be. Nurse Ant Hova (voice of Julia Roberts), is put in charge of looking after Lucas. Lucas fights this process and continues to do things his way, totally ignoring the “teamwork” of the ants. At one point, he is running away and can’t climb the wall. The ants tell him he can do it and when he can’t, they yell out “chain” and the ants form a chain and rescue Lucas once again. Working together, they are able to do things that any one ant can’t do on their own.
Throughout the movie, Lucas gets an eye opening perspective of how the other half lives and just in time to help the ants in an all out battle against the pest control man brought in to get rid of the bugs. Throughout the movie, Lucas then begins to see the world from the ant perspective. In one scene, we get to see an underground explosion in the ant world, which is huge, and then see the same explosion in the lawn above ground, from the human perspective, where it is nothing more than a little blip. When you are living in the ant world, the explosion is huge, almost overwhelming and yet when you aren’t in the ant world, you just can’t comprehend the magnitude of the explosion.
About a half hour into the movie, Dear Son begins to fuss. At first, I think it may be seizures, because his hands are shaking and I am unable to calm him down. I use the magnet on the vagus nerve stimulator and things seem to get better. A short while later, he begins to fuss a lot and I have difficultly in calming him down. Soon he settles back down and we continue to watch the movie. 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 anyplace 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.
If we put ourselves in Dear Son’s shoes, we couldn’t go very many places if we had to go out and never be allowed to use a restroom for the entire length of time we are out. Can you imagine going out for the evening to dinner and a movie and not being allowed to go to the washroom or not having facilities available to use? Can you imagine what it would be like to have to go home anytime you are out somewhere, because you have to go to the washroom? And why, why do we insist on making lives more difficult for special needs children and adults? We need to make their lives easier.
I have to wonder if this is really the absolute best we can do as a society for these children? Being disabled should not be a handicap to having some fun and having a life. We need to begin to make things easier for these children and those who take care of them. We need people to understand that we anyone can be disabled in a heartbeat. One small car accident and you can be disabled for life. We need people to understand that making things easier or putting in facilities that disabled people can use aren’t just for the disabled. These are things that “everyone” uses which is why it’s called “universal” design.
We need a family restroom at public places. As a mother, I need a washroom I can take Dear Son into to change him. I don’t feel comfortable taking him into a woman’s washroom, lying him on the floor in full view of all the teenage girls, young girls, and adult women, and changing him. I don’t feel that allows him any dignity, even if I can lift him.
I also don’t feel comfortable going into a men’s washroom and changing him on the men’s washroom floor. It would be humiliating for me and I can only imagine what Dear Son must feel like to go into a woman’s washroom.
If I had a family washroom large enough to get in a wheelchair and with a bench of some kind to lie him on, I could change him. I know that this washroom would be used by fathers who take their daughters in to be changed, mothers of kids in diapers, disabled children and the like.
Like the Ant Bully, it’s all about perspective. You never know what it’s like until you are shrunk down and forced to live in the world of the disabled.
Chain.
We get to the movie theatre and it’s wonderful. This theatre is great for wheelchairs. The first row on the main floor, in the center of the theatre, has a few seats and then some of the seats have been removed which leaves lots of space for a wheelchair. You can actually sit next to someone in a wheelchair as opposed to having them sit in a different row, which is frequently the case.
The Ant Bully begins. It’s a wonderful movie that centers around ten year old Lucas Nickle, who had recently moved to a new city with his family and he’s definitely not having any fun-he doesn’t have any friends, his big sister ignores him and his parents are occupied with their upcoming vacation in Mexico. Lucas, a nerd, quickly becomes the victim of the neighborhood bully Steve. Steve, constantly picks on Lucas, pulling him up by his underwear until the elastic breaks and he falls to the ground. Lucas, also known as Peanut, is frequently terrorized by Steve and soon begins his displacement of aggression by taking out his frustrations on the ant holes in his yard. He proceeds to stomp on them and squirting them with the garden hose.
Little does Lucas know but there is a whole world alive beneath the ground in his yard, and the ants view Lucas as a threat to their safety and begin fighting back. In the ant world, he is known as Lucas the Destroyer and Zoc, the Ant Wizard (voice of Nicholas Cage), creates a formula that shrinks Lucas to the size on an insect. Lucas awakens to find himself a prisoner of the ants. The tiny boy is then brought before the leader of the Ant Colony to answer for his crimes against the ant. Showing compassion, the Queen of the Colony (voice of Meryl Streep) sentences Lucas not to death, but to live among them and see how difficult their circumstances can be. Nurse Ant Hova (voice of Julia Roberts), is put in charge of looking after Lucas. Lucas fights this process and continues to do things his way, totally ignoring the “teamwork” of the ants. At one point, he is running away and can’t climb the wall. The ants tell him he can do it and when he can’t, they yell out “chain” and the ants form a chain and rescue Lucas once again. Working together, they are able to do things that any one ant can’t do on their own.
Throughout the movie, Lucas gets an eye opening perspective of how the other half lives and just in time to help the ants in an all out battle against the pest control man brought in to get rid of the bugs. Throughout the movie, Lucas then begins to see the world from the ant perspective. In one scene, we get to see an underground explosion in the ant world, which is huge, and then see the same explosion in the lawn above ground, from the human perspective, where it is nothing more than a little blip. When you are living in the ant world, the explosion is huge, almost overwhelming and yet when you aren’t in the ant world, you just can’t comprehend the magnitude of the explosion.
About a half hour into the movie, Dear Son begins to fuss. At first, I think it may be seizures, because his hands are shaking and I am unable to calm him down. I use the magnet on the vagus nerve stimulator and things seem to get better. A short while later, he begins to fuss a lot and I have difficultly in calming him down. Soon he settles back down and we continue to watch the movie. 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 anyplace 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.
If we put ourselves in Dear Son’s shoes, we couldn’t go very many places if we had to go out and never be allowed to use a restroom for the entire length of time we are out. Can you imagine going out for the evening to dinner and a movie and not being allowed to go to the washroom or not having facilities available to use? Can you imagine what it would be like to have to go home anytime you are out somewhere, because you have to go to the washroom? And why, why do we insist on making lives more difficult for special needs children and adults? We need to make their lives easier.
I have to wonder if this is really the absolute best we can do as a society for these children? Being disabled should not be a handicap to having some fun and having a life. We need to begin to make things easier for these children and those who take care of them. We need people to understand that we anyone can be disabled in a heartbeat. One small car accident and you can be disabled for life. We need people to understand that making things easier or putting in facilities that disabled people can use aren’t just for the disabled. These are things that “everyone” uses which is why it’s called “universal” design.
We need a family restroom at public places. As a mother, I need a washroom I can take Dear Son into to change him. I don’t feel comfortable taking him into a woman’s washroom, lying him on the floor in full view of all the teenage girls, young girls, and adult women, and changing him. I don’t feel that allows him any dignity, even if I can lift him.
I also don’t feel comfortable going into a men’s washroom and changing him on the men’s washroom floor. It would be humiliating for me and I can only imagine what Dear Son must feel like to go into a woman’s washroom.
If I had a family washroom large enough to get in a wheelchair and with a bench of some kind to lie him on, I could change him. I know that this washroom would be used by fathers who take their daughters in to be changed, mothers of kids in diapers, disabled children and the like.
Like the Ant Bully, it’s all about perspective. You never know what it’s like until you are shrunk down and forced to live in the world of the disabled.
Chain.
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