I think Play-Doh can teach us a lot about life. Jordan often says he "can't" make a certain thing he wants to make, or he says, "I don't know how." I tell him, first of all, there is no "can't" in our house. Second, even if what he makes isn't perfect, he just has to TRY. And with practice, what he makes will turn out better each time. Playing Play-Doh is not about making perfect things; it's about practicing, learning, being creative, being funny, and even relieving tension through kneading a ball in your hands. Play-Doh IS LIFE.
Wednesday, February 27, 2008
Play-Doh: Life Lessons
Jordan and I have gotten really into "playing Play-Doh," as he calls it. Kneading the Doh, creating whatever we want--including mainly food, for some reason, as well as chairs, beds, and other items his mini penguin, Pengu, is apparently in desperate need of--
I think Play-Doh can teach us a lot about life. Jordan often says he "can't" make a certain thing he wants to make, or he says, "I don't know how." I tell him, first of all, there is no "can't" in our house. Second, even if what he makes isn't perfect, he just has to TRY. And with practice, what he makes will turn out better each time. Playing Play-Doh is not about making perfect things; it's about practicing, learning, being creative, being funny, and even relieving tension through kneading a ball in your hands. Play-Doh IS LIFE.
I think Play-Doh can teach us a lot about life. Jordan often says he "can't" make a certain thing he wants to make, or he says, "I don't know how." I tell him, first of all, there is no "can't" in our house. Second, even if what he makes isn't perfect, he just has to TRY. And with practice, what he makes will turn out better each time. Playing Play-Doh is not about making perfect things; it's about practicing, learning, being creative, being funny, and even relieving tension through kneading a ball in your hands. Play-Doh IS LIFE.
Monday, December 10, 2007
“Handicapped”
When my son was born with a dislocated knee, dislocated hips, clubfeet, and missing the lower part of his spine, and they said he might never walk (might not even LIVE), I thought I knew what it meant. I had just spent the last 5 weeks of my pregnancy in a cast from my toes to my knee, after breaking my ankle when I was 8 months pregnant.
Anyone who has been 8 and 9 months pregnant knows how often you have to go to the bathroom. The first night, I had to sleep on the sofa downstairs, and with no access to a bathroom on the same floor, my dad brought over his portable toilet they use while camping. It was a Sunday night, so I had to wait until the next afternoon to get my leg casted. I couldn’t take any pain medications because I was pregnant, so I spent the night in agony on that sofa, getting up several times to use the portable toilet, which was sitting on one of our living room chairs.
After getting my cast on, I managed to crawl up the steps to our house backwards, but then I had to haul myself up into a desk chair with wheels on it. We called it the FDR’s wheelchair because of how old and rickety it looked. But other chairs were too high for me to hoist myself up into. So I had to use my arms and the non-broken leg—I couldn’t put any weight whatsoever on the broken ankle—to lift up this heavy body I wasn’t used to. My family wasn’t giving me any help, really. They wanted me to “keep active.” All I thought about was keeping the baby safe.
I had to convince them to let me have a wheelchair; they thought I should walk on crutches so I’d be more active. But after falling down stairs and breaking my ankle, I wasn’t very confident about using crutches. I had never used them before, and I thought being 8 months pregnant, after already falling once, it was not the time to learn.
This late in pregnancy, it’s hard to sleep anyway, and now they say you shouldn’t sleep on your back when you’re pregnant. So, I had to sit up in bed with my leg elevated. It was hard to sleep, too, with the number of bathroom trips I had to make. The first week, before I had my wheelchair, I had to walk down the hall in the middle of the night, about once an hour, on crutches, scared I was going to fall again. Then when I did have the wheelchair, it was hard to move myself from the bed into the chair because there wasn’t much room for it next to the bed. When I was in the chair, I would wheel down the hallway, and then because the wheelchair couldn’t fit in through the bathroom door, I had to stand up at the door on one leg, grab my crutches, and take a few uncertain steps on them before plopping down as gently as I could on the toilet (ie, not gently at all), worried with every movement that I’d do something to hurt the baby.
To get into the shower, I’d have to step over the edge of the tub and then shower on one leg, and I wasn’t comfortable doing that. Also, we never realized we could put a plastic bag over my cast. So, I took sponge baths. I sat on the toilet, put a few towels over my cast, and then bathed from the water in the yellow bucket that I’d gotten as a baby shower gift. (The bucket had been the “gift basket,” and inside were all kinds of cute baby bath things such as washcloths, baby lotions, and baby shampoos.) I’d wash my hair and then rinse it by leaning over the tub and pouring a pitcher of water over my head. I took my time with these sponge baths; it was one of the only times of day when I felt fresh, clean, and comfortable—and not afraid that I wasn’t going to fall down (mainly because I was already sitting down)!
During those 5 weeks, I rarely went out, mostly to doctor’s appointments. The first time my ob/gyn saw me with the cast, hobbling out of the bathroom on crutches, she looked shocked and shouted, “You can’t deliver a baby LIKE THAT, with THAT on your leg!!!”
The day I got the wheelchair, my dad insisted on taking me out to the movies. I really didn’t want to go, but he thought I needed to get out. What I remember most about it was hard it was to use the bathroom. It was hard to open the doors to get into the bathroom, and then when inside the stall, the handrails on the walls were very wobbly, and some were coming off the walls. And the floor was slippery when I tried to haul myself from the wheelchair onto the toilet, and of course I was terrified as usual that I would fall and hurt the baby.
Also, he dropped me off at the door to park the car, and when I went to the ticket booth to buy our tickets, the man working there took a while to notice I was there because I was so low down in the wheelchair. Then he barely looked at me. It might not have been me, but that was how I perceived it, that he was “looking down on me” because I was in a wheelchair. And doors were slammed in my face whenever we went to the movies. No one would stand there and hold a door for me.
I was due to get the cast off 1 week before having the baby. Of course, he came a little early, and I still had the cast on when he was born. He was turned the wrong way, so I had to have a c-section. The mood in the delivery room was cheerful until he was born, and then it grew very quiet. Then I heard mutterings, “His legs… something is wrong with his legs….” After that, everyone was silent, and my husband went over as they cleaned him off, and all their backs were to me. “What’s wrong with him?” I yelled over and over. They seemed miles away from me but were only feet away. I tried to reach out to my baby, but my arms were pinned down. My legs were literally paralyzed from the epidural, and I couldn’t walk anyway with my leg in a cast. They let me glance at him for a split second, but of course not hold him, as they took my husband out and they stitched me up.
“What’s wrong with him?” I finally got to ask my husband.
“Just a little something with his legs. No big deal,” he said, as they pushed him out of the room. I later learned that while I
was in there worried out of my mind, he was in the hallway holding our baby, Jordan, and showing him off to the grandparents. They took a lot of very smiley photos as I was alone in the recovery room, being told my baby probably had trisomy 18, meaning “mental retardation, heart problems, and die before age 1.” The doctor who said that then left me alone again, questions unanswered, with me on drugged out and shivering under a hot blanket.
They took Jordan away the next morning to a NICU about 40 miles away. Mike, my husband, came and stayed overnight with me every night that I was in the hospital, but he spent many hours of the day and into the late night there with Jordan in the NIC
U, reading him books. And holding him and feeding him, two things I was supposed to be doing. Not him. Me. But there I was worthless and helpless in a hospital bed 40 miles away while doctors ran countless tests on my baby and nurses took care of his most basic needs.
One of the major things you’re supposed to do after a c-section is stand up on the second day after surgery. For me, they had two young physical therapists come in to help me. The pain was excruciating—but not as bad as broken ankle had been—as I stood up and these two young girls stared at me, dumbfounded. “That’s it,” I said, “I’m sitting down now.” Later that day they sent in a very energetic, muscular male PT, I guess who was supposed to motivate me. He didn’t. On maybe the third day, they let me take an actual shower, the first one I’d had in 5 weeks. They put a plastic thing over my leg, the nurse left me alone, and I just let the water rain down over me for nearly 45 minutes. And with less fear of falling now that I’d had the baby, I did start to walk on the crutches a little bit, and I remember so clearly that moment as I walked into the shower for the first time: I thought, this is what my baby is going to experience his whole life—this helplessness, pain, fear, sorrow, and anger. This is what being “handicapped” is all about, and this is what his whole life is going to be like!
Little did I know the powerful person my baby was. I was terrified to go into the NICU, but seeing him there for the first time, he looked so healthy lying next to the tiny babies in incubators. He had great coloring, was active and alert, and I could have sworn, he stared into my eyes already, responded to my voice, and knew who I was. And he looked like he knew something. At 2 weeks, old, he smiled during his first bath in the kitchen sink. At 6 weeks old, his Gymboree teacher told me, “He has an old soul.” At 3 months old, he laughed his first big laugh during an appointment at Shriners. He had five surgeries before he was 18 months old, and all of them were much harder for me than for him.
When he was just under 2 years old, he was a ringbearer in his grandfather’s wedding. When they asked us if he could be in the wedding, he couldn’t even walk yet. On the day of the wedding, he had been walking with his walker for only about 2 months. The other ringbearer, who was about Jordan’s age, had no trouble walking, but he cried his eyes out and had to be carried down the aisle by his mommy. Then Jordan confidently walked into the church all alone, looking like a little gentleman in his tuxedo, and shouted, “Hello, everybody!” He dashed down the aisle, taking his job very seriously, and sat in the front row of the church and “read” the church bulletin. The other kid continued to sob during the entire ceremony.
And now, at 3 years old, Jordan is the most joyful person I have ever known. He has what the veterinarian said of our Labrador retriever a few years back: joie de vivre. As he runs around with his walker, uses his forearm crutches as swords, throws himself on the floor when fighting imaginary bad guys, dances like crazy and throws his head around, “rocks out” with a guitar and sings at the top of his lungs, being “handicapped” is not something he considers or has any understanding of—and the way it looks now, he never will.
Anyone who has been 8 and 9 months pregnant knows how often you have to go to the bathroom. The first night, I had to sleep on the sofa downstairs, and with no access to a bathroom on the same floor, my dad brought over his portable toilet they use while camping. It was a Sunday night, so I had to wait until the next afternoon to get my leg casted. I couldn’t take any pain medications because I was pregnant, so I spent the night in agony on that sofa, getting up several times to use the portable toilet, which was sitting on one of our living room chairs.
After getting my cast on, I managed to crawl up the steps to our house backwards, but then I had to haul myself up into a desk chair with wheels on it. We called it the FDR’s wheelchair because of how old and rickety it looked. But other chairs were too high for me to hoist myself up into. So I had to use my arms and the non-broken leg—I couldn’t put any weight whatsoever on the broken ankle—to lift up this heavy body I wasn’t used to. My family wasn’t giving me any help, really. They wanted me to “keep active.” All I thought about was keeping the baby safe.
I had to convince them to let me have a wheelchair; they thought I should walk on crutches so I’d be more active. But after falling down stairs and breaking my ankle, I wasn’t very confident about using crutches. I had never used them before, and I thought being 8 months pregnant, after already falling once, it was not the time to learn.
This late in pregnancy, it’s hard to sleep anyway, and now they say you shouldn’t sleep on your back when you’re pregnant. So, I had to sit up in bed with my leg elevated. It was hard to sleep, too, with the number of bathroom trips I had to make. The first week, before I had my wheelchair, I had to walk down the hall in the middle of the night, about once an hour, on crutches, scared I was going to fall again. Then when I did have the wheelchair, it was hard to move myself from the bed into the chair because there wasn’t much room for it next to the bed. When I was in the chair, I would wheel down the hallway, and then because the wheelchair couldn’t fit in through the bathroom door, I had to stand up at the door on one leg, grab my crutches, and take a few uncertain steps on them before plopping down as gently as I could on the toilet (ie, not gently at all), worried with every movement that I’d do something to hurt the baby.
To get into the shower, I’d have to step over the edge of the tub and then shower on one leg, and I wasn’t comfortable doing that. Also, we never realized we could put a plastic bag over my cast. So, I took sponge baths. I sat on the toilet, put a few towels over my cast, and then bathed from the water in the yellow bucket that I’d gotten as a baby shower gift. (The bucket had been the “gift basket,” and inside were all kinds of cute baby bath things such as washcloths, baby lotions, and baby shampoos.) I’d wash my hair and then rinse it by leaning over the tub and pouring a pitcher of water over my head. I took my time with these sponge baths; it was one of the only times of day when I felt fresh, clean, and comfortable—and not afraid that I wasn’t going to fall down (mainly because I was already sitting down)!
During those 5 weeks, I rarely went out, mostly to doctor’s appointments. The first time my ob/gyn saw me with the cast, hobbling out of the bathroom on crutches, she looked shocked and shouted, “You can’t deliver a baby LIKE THAT, with THAT on your leg!!!”
The day I got the wheelchair, my dad insisted on taking me out to the movies. I really didn’t want to go, but he thought I needed to get out. What I remember most about it was hard it was to use the bathroom. It was hard to open the doors to get into the bathroom, and then when inside the stall, the handrails on the walls were very wobbly, and some were coming off the walls. And the floor was slippery when I tried to haul myself from the wheelchair onto the toilet, and of course I was terrified as usual that I would fall and hurt the baby.
Also, he dropped me off at the door to park the car, and when I went to the ticket booth to buy our tickets, the man working there took a while to notice I was there because I was so low down in the wheelchair. Then he barely looked at me. It might not have been me, but that was how I perceived it, that he was “looking down on me” because I was in a wheelchair. And doors were slammed in my face whenever we went to the movies. No one would stand there and hold a door for me.
I was due to get the cast off 1 week before having the baby. Of course, he came a little early, and I still had the cast on when he was born. He was turned the wrong way, so I had to have a c-section. The mood in the delivery room was cheerful until he was born, and then it grew very quiet. Then I heard mutterings, “His legs… something is wrong with his legs….” After that, everyone was silent, and my husband went over as they cleaned him off, and all their backs were to me. “What’s wrong with him?” I yelled over and over. They seemed miles away from me but were only feet away. I tried to reach out to my baby, but my arms were pinned down. My legs were literally paralyzed from the epidural, and I couldn’t walk anyway with my leg in a cast. They let me glance at him for a split second, but of course not hold him, as they took my husband out and they stitched me up.
“What’s wrong with him?” I finally got to ask my husband.
“Just a little something with his legs. No big deal,” he said, as they pushed him out of the room. I later learned that while I
was in there worried out of my mind, he was in the hallway holding our baby, Jordan, and showing him off to the grandparents. They took a lot of very smiley photos as I was alone in the recovery room, being told my baby probably had trisomy 18, meaning “mental retardation, heart problems, and die before age 1.” The doctor who said that then left me alone again, questions unanswered, with me on drugged out and shivering under a hot blanket.They took Jordan away the next morning to a NICU about 40 miles away. Mike, my husband, came and stayed overnight with me every night that I was in the hospital, but he spent many hours of the day and into the late night there with Jordan in the NIC
U, reading him books. And holding him and feeding him, two things I was supposed to be doing. Not him. Me. But there I was worthless and helpless in a hospital bed 40 miles away while doctors ran countless tests on my baby and nurses took care of his most basic needs.It still kills me to look at the first photos of him, taken when he was in the NICU. He had scratches all over his face because no one cut his nails, and he didn't have those little mittens to wear. And he was wearing a donated outfit because my husband didn't think to bring him anything to wear. I know he was busy running back and forth between hospitals. But instead of Jordan's wearing the adorable Winnie the Pooh outfit I had picked out for him to wear as a newborn, he was wearing a donated outfit, with scratches on his face, no mommy to take care of him.
One of the major things you’re supposed to do after a c-section is stand up on the second day after surgery. For me, they had two young physical therapists come in to help me. The pain was excruciating—but not as bad as broken ankle had been—as I stood up and these two young girls stared at me, dumbfounded. “That’s it,” I said, “I’m sitting down now.” Later that day they sent in a very energetic, muscular male PT, I guess who was supposed to motivate me. He didn’t. On maybe the third day, they let me take an actual shower, the first one I’d had in 5 weeks. They put a plastic thing over my leg, the nurse left me alone, and I just let the water rain down over me for nearly 45 minutes. And with less fear of falling now that I’d had the baby, I did start to walk on the crutches a little bit, and I remember so clearly that moment as I walked into the shower for the first time: I thought, this is what my baby is going to experience his whole life—this helplessness, pain, fear, sorrow, and anger. This is what being “handicapped” is all about, and this is what his whole life is going to be like!
Little did I know the powerful person my baby was. I was terrified to go into the NICU, but seeing him there for the first time, he looked so healthy lying next to the tiny babies in incubators. He had great coloring, was active and alert, and I could have sworn, he stared into my eyes already, responded to my voice, and knew who I was. And he looked like he knew something. At 2 weeks, old, he smiled during his first bath in the kitchen sink. At 6 weeks old, his Gymboree teacher told me, “He has an old soul.” At 3 months old, he laughed his first big laugh during an appointment at Shriners. He had five surgeries before he was 18 months old, and all of them were much harder for me than for him.
When he was just under 2 years old, he was a ringbearer in his grandfather’s wedding. When they asked us if he could be in the wedding, he couldn’t even walk yet. On the day of the wedding, he had been walking with his walker for only about 2 months. The other ringbearer, who was about Jordan’s age, had no trouble walking, but he cried his eyes out and had to be carried down the aisle by his mommy. Then Jordan confidently walked into the church all alone, looking like a little gentleman in his tuxedo, and shouted, “Hello, everybody!” He dashed down the aisle, taking his job very seriously, and sat in the front row of the church and “read” the church bulletin. The other kid continued to sob during the entire ceremony.
And now, at 3 years old, Jordan is the most joyful person I have ever known. He has what the veterinarian said of our Labrador retriever a few years back: joie de vivre. As he runs around with his walker, uses his forearm crutches as swords, throws himself on the floor when fighting imaginary bad guys, dances like crazy and throws his head around, “rocks out” with a guitar and sings at the top of his lungs, being “handicapped” is not something he considers or has any understanding of—and the way it looks now, he never will.
Wednesday, May 09, 2007
The Lamb Chop Incident
The other night while we were out at dinner, we encountered the usual gawkers. As Jordan walked with his walker, almost everyone in the restaurant craned their necks to stare at him, shouting the usual things like, "You're doing great!" How do THEY know he's doing great? Maybe he is declining, rather than improving. They have no idea.
Then, when we were in the store, this couple behind us in line saw Jordan grabbing the Lamb Chop dolls. I told him no, he couldn't have one. I was buying him somet
hing else. The man behind us said, "Aww, you like those Lamb Chops?" It was then that I knew, and cringed--they were going to buy one for him. I tried to get us out of there fast, but the woman came running up to us and gave him the Lamb Chop. I wish I would have said, "No thank you" graciously. But I was just cringing, unable to come up with a good spur-of-the-moment reply. I told him to say thank you, as I gritted my teeth.
The woman thought buying him something gave her permission to duck down to his level, ask his name, and touch him on the head, saying, "GOD BLESS YOU!" in the most dramatic voice. He said his name was Jordan, and then he turned to continue walking. What a marvel he must have seemed to them!!!!
They were behind us, so nicely holding the door for us. Oh, thanks, I can't hold a door on my own for him. When we were outside, the man touched him on the head and gave him another dramatic "God bless you."
How great those two must have felt that night! They gave this "struggling," "handicapped," oh wait, no, "special needs" child a stuffed animal. They gave him a chance at joy, if only for one fleeting moment. I'll bet they tell their whole congregation about what they did!
But believe it or not, even a child who walks with a walker needs to learn "no" from his mother. If he thinks he can just ask for anything in the store and someone will buy it for him, well, that's not a really good lesson for him to learn.
And what he needs most is not a stuffed toy. What he needs is just one day when people don't gawk at him, make him and me feel different because he uses a device to help him walk. He needs one day when strangers don't think they have the right to buy him something his mother does not want him to have and then to touch him. He needs one day when he can just be a kid and I can just be his mother. Without any pity, without any "good job"'s or cheers for doing what any other son and mother do every day--go shopping, eat dinner, and walk along together.
Then, when we were in the store, this couple behind us in line saw Jordan grabbing the Lamb Chop dolls. I told him no, he couldn't have one. I was buying him somet
hing else. The man behind us said, "Aww, you like those Lamb Chops?" It was then that I knew, and cringed--they were going to buy one for him. I tried to get us out of there fast, but the woman came running up to us and gave him the Lamb Chop. I wish I would have said, "No thank you" graciously. But I was just cringing, unable to come up with a good spur-of-the-moment reply. I told him to say thank you, as I gritted my teeth.The woman thought buying him something gave her permission to duck down to his level, ask his name, and touch him on the head, saying, "GOD BLESS YOU!" in the most dramatic voice. He said his name was Jordan, and then he turned to continue walking. What a marvel he must have seemed to them!!!!
They were behind us, so nicely holding the door for us. Oh, thanks, I can't hold a door on my own for him. When we were outside, the man touched him on the head and gave him another dramatic "God bless you."
How great those two must have felt that night! They gave this "struggling," "handicapped," oh wait, no, "special needs" child a stuffed animal. They gave him a chance at joy, if only for one fleeting moment. I'll bet they tell their whole congregation about what they did!
But believe it or not, even a child who walks with a walker needs to learn "no" from his mother. If he thinks he can just ask for anything in the store and someone will buy it for him, well, that's not a really good lesson for him to learn.
And what he needs most is not a stuffed toy. What he needs is just one day when people don't gawk at him, make him and me feel different because he uses a device to help him walk. He needs one day when strangers don't think they have the right to buy him something his mother does not want him to have and then to touch him. He needs one day when he can just be a kid and I can just be his mother. Without any pity, without any "good job"'s or cheers for doing what any other son and mother do every day--go shopping, eat dinner, and walk along together.
Friday, January 05, 2007
Letter to Parents Regarding “Ski Poles”
Over and over, I have seen the same reaction from other parents. These are people in my own family as well as friends of mine, not strangers. What happens is their kid takes Jordan’s “ski poles” (forearm crutches) and starts to play with them. The parent, who seemed to not even be watching what their child was doing for the past half hour, suddenly shouts in a tremulous voice, “GIVE THEM BACK TO JORDAN! THEY’RE NOT TOYS!!!”
I know that everyone thinks Jordan really needs the ski poles to get by, but if he doesn't have them for a minute, it's FINE. A few things:
First, I actually kind of LIKE it when another kid takes them and plays with them because it shows that they are normal, not anything to be scared of or think is weird. If your kids see them as something normal and maybe even something “cool,” then maybe you should, too.
Also, kids only take them when he's not using them, when they're sitting on the floor unused. They couldn't steal them out of his hands if he didn't want them to have them. He has very strong arms and hands, I’d say stronger than most kids because he relies on them more than other kids do. Also, he genuinely thinks he is a PIRATE and is very good at swordfighting. He would use the ski poles as swords to avoid having them stolen from him when he’s using them.
I know that everyone thinks Jordan really needs the ski poles to get by, but if he doesn't have them for a minute, it's FINE. A few things:
First, I actually kind of LIKE it when another kid takes them and plays with them because it shows that they are normal, not anything to be scared of or think is weird. If your kids see them as something normal and maybe even something “cool,” then maybe you should, too.
Also, kids only take them when he's not using them, when they're sitting on the floor unused. They couldn't steal them out of his hands if he didn't want them to have them. He has very strong arms and hands, I’d say stronger than most kids because he relies on them more than other kids do. Also, he genuinely thinks he is a PIRATE and is very good at swordfighting. He would use the ski poles as swords to avoid having them stolen from him when he’s using them.
So then the point is that when kids take them, it's a time he isn't actually using them and doesn't need them. He is occupied with something else. He doesn’t use these ski poles 24 hours a day. He likes to stand at tables and play or sit on the floor or sit on chairs, the sofa, you know, just like other people.
So if by chance your child should kick him while he’s walking with the ski poles, steal them out of his hands and run away with them, as he lies crying on the floor—helloooo, he would not do this; he would LAUGH that someone tricked him—then yes, I guess it does warrant a tremulous voice and a “They’re not toys!!!”
But if your child does the only thing we’ve seen so far, which is take them when Jordan isn’t even using them, then just please act like it’s Jordan’s favorite toy truck—yell at them like it’s that, not like it’s some sacred object that they’ve stolen. They’re not sacred—Jordan got along before he had them, and he’ll get along even if all the ski poles in the universe are suddenly destroyed.
Bringing me to another point: Parents often say, "You're going to break them!!" If your child can bend or break metal, then I'd like to see him try!
I thought at first when I saw this overreaction by other parents that they were upset because they were picturing their own child using the crutches and didn’t want to think about that. But I have since realized that other parents probably don’t think that way. The do genuinely want Jordan to have his ski poles back. Plus, the thought probably never crosses their mind that their child would ever need to use objects to walk with. Must be nice.
But It’s not so bad, you know. It’s a great accomplishment for Jordan to be using these walking sticks. When I see him walking around the house or the mall or the yard with the ski poles, I think of the five surgeries, the first year of his life spent almost entirely in casts, and I don’t get upset that he’s using the poles. I am overjoyed to see how happy he is having this independence.
Wednesday, November 08, 2006
A Pirate's Life for Me
When my 2-year-old son, Jordan, first started to get into pirates, I wasn’t so sure about it. I didn’t like the violence, the sword fighting, the bad language, the drinking. I didn’t really like the disabled pirate thing, either: the “peg legs,” the eye patches, the hooks for hands. Jordan wears braces on his legs for orthopedic impairments and uses forearm crutches, and I didn’t like him seeing these disabled pirates hobbling around on busted-up wooden crutches.But the pirate thing couldn’t be stopped. My husband got Jordan into the Pirates of the Caribbean; I tried to push Muppet Treasure Island. Whatever pirate movie was on, Jordan insisted that pirates would be part of his life!
Now he is totally obsessed with pirates. He was one for Halloween, of course, and this year he’s going to have a pirate-themed birthday party (maybe even with a Jack Sparrow look-alike in attendance—but is that for him or for Mommy?).
But it goes beyond just pirates on special occasions. Sometimes I think he truly thinks he is a pirate. Captain Jack Sparrow is a constant topic
of conversation at our house. Jordan’s pirate name is now Captain Jordan Two Swords. He spends most of his day thinking about, talking about, playing with, and watching pirates. His collections of Playmobil and Pirates of the Caribbean pirates and accessories are growing. I must admit that I love playing with them, too. The Playmobil pirates are like a boy’s version of Barbies, with their hats that snap on, their beards that come off and can be switched between pirates. They have capes, necklaces, earrings, all tiny and all fun to put on and off.Then of course, there are the swords. The Playmobil and Caribbean pirates all have swords that snap on and off. Then the bigger, kid-size swords: Jordan has four of them now. I resisted sword fighting with him at first—the violence!!—but when I finally did, I was impressed with how well he does at it. He doesn’t just swing his arm around; instead, he does very precise maneuvers with his wrist. He doesn’t flail around but is very exact. And he gets so much joy out of it. He doesn’t even mind when he loses. I found a way to actually hit the sword out of his hand so I can win every time (I know, bad mommy!). He yells, “You got me!” and sometimes even falls down. His father loves swords, too, and is planning on taking fencing lessons with Jordan when Jordan is older.
Jordan loves singing pirate songs—we recently got a whole CD Of “swashbuckling sea songs.” He has so much fun singing along to the music, and he always makes me sing, too. He uses so many pirate expressions, like “Shiver me timbers,” “Walk me plank!” and much to my horror at first, “Surrender the booty!”
He also loves pirate treasure. He has loved playing with money for a while now (he even knows who Andrew Jackson is because of playing with money!). Before this, he had a piggy bank and several cash registers he was obsessed with. But now he can put his interest in money into pirate gold. He counts the coins, arranges them, puts them away, takes them back out, and shouts, “I got treasure!”
But the real turning point for me, when I began to really accept his love of pirates, was when we were shopping for more Playmobil pirates, and I came across Captain Peg Leg. With my newfound “disability rights” feelings, I didn’t like that name
at all. I started to think more about how I didn’t like the eye patch or hook things, either. Why do pirates have to have these impairments all the time?But Jordan saw Captain Peg Leg and shouted, “He has braces!” Jordan has never known a time in his life when he did not have casts or braces of some kind on his legs. So, for him, seeing someone else who had braces, which he rarely sees, was something great and new for him. I put Captain Peg Leg in the cart.
Then, while watching the pirate movies, seeing these pirates that do have hooks, peg legs (or prosthetic is the right word!), and eye patches, I started to view them differently. Yes, they have impairments, but not disabilities. The pirate with the leg prosthetic sword fights right along with the others. The one with the hook for a hand drinks his booze with the other hand. There is never any talk among the pirates about their impairments; they are seen as just another part of life. Besides, there is no time for pity or for thinking too much about any limitations—there are songs to sing, booty to steal, and adventures to have!
Thursday, August 10, 2006
Mobility
When I was in middle school, I remember there was this girl on the school bus I took who used forearm crutches to walk. I remember staring at her through the window of the bus as she walked to get onto the bus. She had to cross over one lane of traffic to get to the bus. It took her a long time, and it didn't look easy for her. She always seemed happy, though. That was one thing I couldn't understand then, how she could be happy when she had to walk like that. She was very friendly and would talk to people, but most people would just ignore her. Including me. I feel so guilty and terrible now as I remember that I would think to myself, "Please don't let her talk to me." Because then I'd be obligated to talk to her, and someone might see me talking to her. I didn't have many friends. I wasn't popular at all. Yet I didn't want to be seen talking to the girl who walked like that.
Then what, 20 years later, first, I had a miscarriage in May of 2002. That happened the same week I got fired from my job. Fired, then found out I was pregnant a few days later, then went to the doctor a few days after that, who sent me right in for an ultrasound, and there on the screen: a sac with nothing in it. Or nothing we could see. Nothing every bled out, and I had to have it surgically removed. I spent the whole summer at home, jobless, mourning. Luckily, we had just gotten our dog, Kahlua, a chocolate Lab, in January of that year. She was with me all the time. When I laid in bed depressed, she'd come up and lie back to back with me. It was better than a person, really, because I didn't have to say a word.
The next year, in November of 2003, I got pregnant again. Within weeks, I started bleeding. It was heavy period-like bleeding that lasted 6 weeks straight. It was the most frightening thing to me in the world at the time--going to the bathroom so many times a day, never knowing what I'd find.
I went on bedrest for 3 weeks, but I continued to bleed. The doctor said what will happen will happen, and bedrest really wasn't going to do anything. I went back to work, still bleeding. It stopped on January 18, 2004. I don't usually remember dates too well, but that one I do. The baby was fine. But it wasn't until March that I bought one thing for the baby. I was 5 months' pregnant by that time, and my husband and I went to Target and got a few little outfits and stuff. I remember these little light green onesies we bought. They had palm trees on them and giraffes. They were sooo cute. I let myself trust that the baby was going to be okay. Finally, I let myself believe it.
After Target, we went out to eat that night, to celebrate. I saw an ex-coworker there. She was from the job I got fired from. So that brought all of that back. We liked the restaurant--they had freshly baked, hot chocolate chip cookies with cold milk for dessert! So a few weeks later, we went back to the same restaurant with some friends. I remember waiting for our table and seeing this group of two couples with their kids. One of the kids used those forearm crutches. He was about 5 years old. I remember looking at the parents, noticing how they talked so nonchalantly to each other, laughing, chatting with each other, barely watching their son as he basically ran around on those crutches. I wondered how they could be so casual about it, seemingly not even thinking about how their son was getting around.
Now when people stare at my 2-year-old son when he is using a walker, I am the one acting casual. I am the one who thinks it's great that he can get around on his own. I am not the one staring, wondering how those parents do it. I am not the kid staring at another kid usi
ng crutches. He's my kid now. And I can see why that little girl on the school bus was so happy, why those parents were laughing and nonchalant. They probably went through a lot to get to that point, and they were glad for the walking, even if it was with a "device." The independence that that walker gives my son and those crutches gave those other kids is what is important--not that they do it in the way people are used to seeing. So when people stare at my son now, I have to try to remember that I was once one of the starers, not understanding what it's like, not understanding that it's a triumph and progress rather than something to be scared of.
Wednesday, August 02, 2006
On Strike
Today I'm taking a break from anything medical related. No calls for appointments or insurance authorizations. Yesterday I was caught in an insane circle of phone calls about getting a medication covered for Jordan and also getting his orthotics covered. I hung up on two different people after cursing at both of them. I hate how I feel after I do that, but I get so riled up, thinking about protecting my son and getting the best for him. To have to do all this, to fight for things that he so obviously needs, that follow THEIR rules of "medically necessary," oh, it just drives me nuts. I "won" these battles, though, because both things are finally approved. I need a break from this fighting all the time. I am going on strike for the day. Ha.
Here are Jordan and his daddy after his daddy won a Curious George for him at the fair.
Friday, July 28, 2006
Insurance
More insurance problems. First, his walker was finally approved. It only took since April 3, when they sent the letter of MEDICAL NECESSITY, signed by the chairman of the dept. of orthopedics. Guess that doesn't mean much to them at the insurance company, that Jordan would not be walking right now if it weren't for the old, beat-up walker we borrowed from our PT. This walker is about $300. Does $300 mean a THING to a big insurance company?
Now the saga with getting the new orthotics approved is just too much to go into. The orthotics place tells me to call the insurance company. The ins. co. tells me to call the doctor. The dr's office tells me to call the ins. co. AND the orthotics place. Do you see the circle of this????? It is INFURIATING. This is the United States of America. We can't do better than this????????????????
The other really stupid thing about it is that if the ins. co. does not pay for these braces or keeps delaying paying for them, Jordan's feet might revert to how they were, and then the insurance co. will have to pay for another SURGERY at tens of thousands of dollars rather than the $2,000 the braces will cost!!!!!!! Does this make any sense? Do we have any preventative medicine in this country????????????
I am so disgusted. It is hard enough when your child even NEEDS to wear braces and use a walker. To have to go through all of this is disgusting. There is never any consideration for how a parent might FEEL having to do all this bullshit while also having to do the normal parenting things plus the doctor's visits. It's all a fight, a never-ending battle. And the people I get to talk to are the low-paid insurance processors, who don't have any power in this either. Yet they are the people I yell and fight with. I shouted, "Fuck you!" to one of them last week and hung up on her. They ask me, "Is there anything else I can help you with?" at the end of the conversation, and I usually say, "You could STILL help me with the information I need, which you didn't do."
Also, one of these insurance people told me that orthotics are only covered for diabetics. I was like, "Do you know what orthotics ARE? You're saying if a kid has spina bifida and can't walk without braces, Keystone won't allow him to walk???" Soooooooooo stupid. After "researching" this issue, she came back on the phone and said that braces can be approved for other conditions if the doctor authorizes them. Oh, no, I'm just thinking to myself, "Hm, wouldn't it be nice if Jordan had some nice ORTHOTICS?" I didn't get a recommendation from a DOCTOR.
Anyway, this whole thing is disgusting.
Now the saga with getting the new orthotics approved is just too much to go into. The orthotics place tells me to call the insurance company. The ins. co. tells me to call the doctor. The dr's office tells me to call the ins. co. AND the orthotics place. Do you see the circle of this????? It is INFURIATING. This is the United States of America. We can't do better than this????????????????
The other really stupid thing about it is that if the ins. co. does not pay for these braces or keeps delaying paying for them, Jordan's feet might revert to how they were, and then the insurance co. will have to pay for another SURGERY at tens of thousands of dollars rather than the $2,000 the braces will cost!!!!!!! Does this make any sense? Do we have any preventative medicine in this country????????????
I am so disgusted. It is hard enough when your child even NEEDS to wear braces and use a walker. To have to go through all of this is disgusting. There is never any consideration for how a parent might FEEL having to do all this bullshit while also having to do the normal parenting things plus the doctor's visits. It's all a fight, a never-ending battle. And the people I get to talk to are the low-paid insurance processors, who don't have any power in this either. Yet they are the people I yell and fight with. I shouted, "Fuck you!" to one of them last week and hung up on her. They ask me, "Is there anything else I can help you with?" at the end of the conversation, and I usually say, "You could STILL help me with the information I need, which you didn't do."
Also, one of these insurance people told me that orthotics are only covered for diabetics. I was like, "Do you know what orthotics ARE? You're saying if a kid has spina bifida and can't walk without braces, Keystone won't allow him to walk???" Soooooooooo stupid. After "researching" this issue, she came back on the phone and said that braces can be approved for other conditions if the doctor authorizes them. Oh, no, I'm just thinking to myself, "Hm, wouldn't it be nice if Jordan had some nice ORTHOTICS?" I didn't get a recommendation from a DOCTOR.
Anyway, this whole thing is disgusting.
Wednesday, May 03, 2006
Disconnected
I always felt somewhat disconnected from people my age. In grade school, while the other girls played with Barbies, I played Little League baseball with the boys. In middle school, when the other girls talked about the weddings they'd have, the men they'd marry, I thought about finding a career. In high school, while the other girls put on makeup and dressed to impress the boys, I was mortified by the superficial. I ignored them and reread "Siddhartha."
But now as the mother of a child with disabilities, I feel the most disconnected from my peers that I've ever felt. Other mothers complain about "chasing" their 2-year-olds around, how tiring it is. But I cherish every step my son takes, and I would chase him forever.
Jordan was born with both hips and one knee dislocated and with clubfeet. Looking at his feet and legs in the beginning, it seemed impossible that he would ever walk. Doctors told us different things, most not so positive. As I lay in the recovery room after the c-section, one doctor told me Jordan may have a chromosomal disorder and would "be mentally retarded, have heart problems, and die before age 1."
But it turned out to not be so serious. He got the first casts on his feet when he was only 9 days old. Then at 2 weeks old, he started physical therapy two times a week. The casts were changed every week, then every 2 weeks. He had three orthopedic surgeries (plus two other ones!), each one more painful than the previous one for me, harder to watch as he grew older and more aware of what was going on, until he was able to break my heart by saying, "Boo boo hurts." Then braces—first starting all the way from his toes up to his hips, with this metal band that went around his waist like a belt, all to help him stand. A night, he wears the braces with the metal bar between his feet. This is to help keep his feet in position so they don’t revert to the positions they were in before surgery.
Then of course there has been the physical therapy. A lot of stretching, pushing him to stand up, pushing him to take tiny steps, many times moving his legs for him one by one until he got the feel of how his legs move. Even so he got the feel of his own legs and feet. They've been in plastic, metal, and fiberglass for so long, most of his life, that the feeling of just his bare legs must be strange to him. He loves putting on lotion himself at night. He could do it for hours at a time if you let him. He smiles so much as he rubs the lotion through his fingers and across his legs and feet, lined with more surgical scars than anyone of any age should have to have.
But he is also so happy. He lives his life to the fullest. H
e danced before he walked, and not just any dancing, but the throwing yourself around kind, the laughing hysterically kind. And at 21 months old, he seems to know that he has already done great things. Just 2 weeks ago, he took his first steps on his own. Some people may think it doesn't "count" because he uses braces and a walker, but to me, it's the most beautiful and amazing thing in the world watching him walk through the grass with the other kids.
So the other mothers can have their complaints. I will stick with the appreciation of every baby step, knowing that taking just one step at a time can get you everywhere you need to go.
But now as the mother of a child with disabilities, I feel the most disconnected from my peers that I've ever felt. Other mothers complain about "chasing" their 2-year-olds around, how tiring it is. But I cherish every step my son takes, and I would chase him forever.
Jordan was born with both hips and one knee dislocated and with clubfeet. Looking at his feet and legs in the beginning, it seemed impossible that he would ever walk. Doctors told us different things, most not so positive. As I lay in the recovery room after the c-section, one doctor told me Jordan may have a chromosomal disorder and would "be mentally retarded, have heart problems, and die before age 1."
But it turned out to not be so serious. He got the first casts on his feet when he was only 9 days old. Then at 2 weeks old, he started physical therapy two times a week. The casts were changed every week, then every 2 weeks. He had three orthopedic surgeries (plus two other ones!), each one more painful than the previous one for me, harder to watch as he grew older and more aware of what was going on, until he was able to break my heart by saying, "Boo boo hurts." Then braces—first starting all the way from his toes up to his hips, with this metal band that went around his waist like a belt, all to help him stand. A night, he wears the braces with the metal bar between his feet. This is to help keep his feet in position so they don’t revert to the positions they were in before surgery.
Then of course there has been the physical therapy. A lot of stretching, pushing him to stand up, pushing him to take tiny steps, many times moving his legs for him one by one until he got the feel of how his legs move. Even so he got the feel of his own legs and feet. They've been in plastic, metal, and fiberglass for so long, most of his life, that the feeling of just his bare legs must be strange to him. He loves putting on lotion himself at night. He could do it for hours at a time if you let him. He smiles so much as he rubs the lotion through his fingers and across his legs and feet, lined with more surgical scars than anyone of any age should have to have.
But he is also so happy. He lives his life to the fullest. H
e danced before he walked, and not just any dancing, but the throwing yourself around kind, the laughing hysterically kind. And at 21 months old, he seems to know that he has already done great things. Just 2 weeks ago, he took his first steps on his own. Some people may think it doesn't "count" because he uses braces and a walker, but to me, it's the most beautiful and amazing thing in the world watching him walk through the grass with the other kids.So the other mothers can have their complaints. I will stick with the appreciation of every baby step, knowing that taking just one step at a time can get you everywhere you need to go.
Thursday, September 08, 2005
Vacation
Our vacation was soo nice! Jordan had so much fun playing with his beach toys, riding in his little boat in the pool, and playing in his little pool on the beach, although Dada kind of got on his nerves when they were building sandcastles. Mike did all the work, and Jordan just sat there frowning and whining a little bit. But he loved the water and eating the sand. At one point, he crawled really fast after a seagull. An older woman gave me a mean look when I let Jordan crawl toward the water like that. I was hoping she would say something to me about it. I was all set with this speech about if you knew how much we've been through in the past year, you'd know that I know how to take care of him! And to me, part of that is letting him have adventures and explore as much as he can while making sure he isn't in any real danger. H
a.Also on our vacation, we ate tons of food, including seafood buffets two nights, and lots of boardwalk food like ice cream and pizza. He loved riding on the tram car thing on the boardwalk and going on the carousel. He especially loved being photographed as a cowboy in a bathtub! He loves staring at this photo, and he even kisses the photo!! Mike says that Jordan is being narcisstic when he stares at it, but I like to think that he's just remembering how much fun our vacation was!
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