Tuesday, December 30, 2008

Things That Are Therapeutic

I have been seeing a psychologist since my son was born. There, I said it. I was originally diagnosed with adjustment disorder.

Adjustment Disorder is an abnormal and excessive reaction to an identifiable life stressor.

I don't agree that my reaction to being told my baby was going to die before age 1 was abnormal and excessive. But nevertheless, I do agree that adjusting to my new life and expectations was stressful and difficult. Since then, I have found other ways to deal with stress (although I continue with my therapist!! :).

I didn't always use the "right" kind of therapy. I threatened my drug and alcohol counselor husband that I was going to start drinking. But I've never been much for alcohol, so that didn't work out. What did work out for a while was "retail therapy." When Jordan was a baby, I thought if he was going to have surgery, he deserved all kinds of expensive toys and cute outfits, even if we couldn't really afford them. And I deserved some new clothes, music, books, too many dinners out....

Since then, I've come up with some more effective and less destructive ways to deal with stress. Getting involved with disability studies has been therapeutic for me. It is no longer just my child, no longer just me as a parent. Disability studies has given me a wider perspective and a community.

I also have an "alone night" every week that has been therapeutic for me. I finally realized that my husband has one night out a week playing Dungeons and Dragons, of all things, so I should have a night to myself as well. I usually have something "bad" but delicious for dinner and then go shopping and to the movies. I don't like seeing any sad movies anymore or even many "dramas." I like purely escapist, silly movies.

The other usual things are also therapeutic for me: music; writing; a long, hot bath; putting on a nice-smelling lotion; getting a nice haircut. And actually, spending time with my son is therapeutic. It has never been him that I've been trying to escape from, that has caused me to need something therapeutic; it's the rest of the world, with their stares, their prescriptions, their red tape. Another parent told me early on, "You'll find your new normal." I think after 4 years, I finally have. I think all along I've been adjusting to making this a normal life for us.

Friday, October 31, 2008

Looking for STARING STORIES

I'm working on a paper about parents of children with disabilities, specifically parents’ reactions to STARING. I want to explore parents’ reactions, dealing with stares, how it makes them feel, how they react, if they intervene and if so, how, and so on.

If you have any stories to share, please email me at twxee@aol.com. I will not use your or your child's real names, of course!

Also please feel free to pass this around to anyone else you think can help!!

Tuesday, October 21, 2008

Capacities and Capabilities

A strange thing about Jordan—or maybe the least strange thing about him—is that whatever people think he isn’t capable of doing is what he wants to excel at. He was born with multiple orthopedic issues such as dislocated hips, a dislocated knee, club feet, and the ability to only move one of his toes (the big toe on his left foot). He walks with a walker or forearm crutches (we call them “ski poles), and he wears braces.

He is very smart and verbal and always has been. But what he wants to excel in are physical things. He throws himself around, he fights with swords, he does stunts on his walker. He is already planning his fifth birthday party—9 months away—as a wrestling party, more specifically, a “smackdown” party. It’s going to take me these 9 months to convince him to have a different theme!

Over the summer, we went to a birthday party for a girl in his class. It was at one of those “bouncetown” places. Right when we got there, the birthday girl’s mother came over to us and said, “There are some things over there that Jordan can play with!” pointing to the “soft play” area for infants. There were about four little foamy pillow-like things for babies to play with on the floor. “Yeah, sure,” I thought. “Just watch him.” He then went and climbed up a huge slide using only his arms, used a rope to climb up another one of the bouncy things, and truly kept up with all the other kids.

Recently when we were going through a lot of stressful things with both my husband’s and my family, it was affecting Jordan at school. He “kept to himself” in the classroom, the teacher told us. But still, out on the playground, he was the usual leader, getting his classmates to trail after him while playing “cops,” and “arresting” nearly every kid on the playground.

Last week they had a bike-a-thon at his school to benefit St. Jude’s. We brought his arm-powered Amtryke in for him to use. He needed help getting around the track, but he told us he “won” the bike-a-thon. I don't want him to be deluded about his physical skills, but I do want his confidence to last.

“I’m wiggling my toe!” he said to me the other day. That was his first acknowledgement about the movement in his toes. But the interesting thing—he didn’t say, “I can’t move nine of my toes.” It was that he can move one of them. The old clich├ęs apply—he’s teaching me more than I’m teaching him. How am I supposed to reconcile not liking it when people say that he is “inspirational” with my own feelings that he does inspire me? He does reveal things to me every day. I feel like I'm not doing any of this; I'm just along for the ride, his loyal follower.

Monday, September 15, 2008

Jordan's Dream

"I had a dream that they let me hand out the forks at school." That's what my 4-year-old son said yesterday.

"Do other kids hand out the forks at school?" I asked him.

"Yes."

"Do they take turns?"

"Yes."

"And you don't get a turn?"

"No."

OH, HELL NO.

His school, which started out great, has gone downhill lately, with teachers leaving all the time. It seems like every few weeks someone is gone and a new teacher is there. It's hard to keep up. Ever since this has been the case, he hasn't liked school as much. He is a very sociable kid, and what went from enthusiasm earlier in the year has turned into the opposite. Changing teachers so much is really affecting him, it seems.

He LOVES to help around the house. He loves doing the dishes with me, and I give him the heaviest pots to put away, the glass bowls, everything (except the sharp knives!!). He feeds the dogs and sweeps the floor. Of course, he cleans up his toys. So it's his DREAM to help out at school. Could my heart be breaking any more than this???????

My husband and I went in to talk to the teacher today. She said, "Okay, I'll do that" and went back to writing something. A weekend full of discussions about how to handle this, what to say, how to explain that we EXPECT INCLUSION, boils down to a dismissal by the teacher. "Are you satisfied with that?" I said loudly to my husband. "No," he said, and we continued to talk to her. He has a bag on his walker that helps him carry things. We expect him to be included just like anyone else. "Okay, I'll do that today," she said. TODAY? No, this should be an overall thing. I almost snatched up Jordan and took him out of there. He sat at a table nearby and was listening to what we said to her. He is still at the stage where he thinks his father and I can solve all the problems of the world. IF ONLY.

We talked to the co-director of the school, and she said she would observe the classroom today and then get back to us and then tell the teacher what changes she needs to make. This seems to be under control for the moment. We would switch him to another school, but if we do that every time he is discriminated against, would we be switching schools constantly? Can we do anything to get them to change? Do they need reminders from time to time? Or is it IMPOSSIBLE??????????????

He is 4 years old now. I do not look forward to all the fights we will have to keep having over his education for the next 14 years. But believe me, I am up for the fight. He is going to know that he will be included. He is going to DEMAND to be included. He is not going to be like me as a kid, shy and letting everyone walk all over him. He is going to continue to see us demand equal treatment, and if he doesn't get it, they are going to see us, hear us, over and over until they get it.

Postscript: Jordan gave out the forks today at school. It makes me cry to think about this simple thing being his dream. It also makes me cry that someday soon I won't be able to solve everything for him so easily. My boy is growing up--is the world ready for him???

Tuesday, September 09, 2008

Baby Feet

Baby feet. When you think of them, you think of something beautiful and amazing—tiny yet somehow strong, envisioning all the places that newborn baby might walk and all the things he might do in his life. A new beginning with new, soft, beautiful, adorable feet to use on the journey. You just want to kiss those cute wittle toes.

It all starts with the baby shower. The gift tags, gift bags, greeting cards—so many of them have pictures of tiny baby footprints on them. The mother-to-be might get a kit to press the baby’s feet into clay to make a keepsake of the footprints. Special frames are used in anticipation of the big event—the baby’s birth and the footprints, which can be framed for posterity or put into an album. 10 perfect fingers and 10 perfect toes. These frames often come with little poems:

Two little feet, ten little toes,
Leave their impressions today.
Soon they will wear two little shoes,
And be running
and jumping at play.
Two little feet, too little time,

Before they are walking to school,
Kicking a rock, or skipping a rope,
Wading a
puddle or jumping a pool.
Two little feet, one little child,
Will soon go the
ir own way,
But footprints in my mind recall,
They stood here yesterday


Or short and simple:

Little hands, little feet
Pure and precious, and Oh So Sweet!


A baby makes footprints in our hearts
that never
dim or fade.

Where ere a baby's little footprints are found,
There is precious and hallowed ground.


The pitter patter of little baby feet
is music to the ears and ever so sweet!


In parenting magazines, it seems that every single baby and toddler is shoeless and sockless. I did a little study of it recently, and it’s hard to turn 5 pages without seeing some baby feet! No one wants to cover up those precious little toes!

It was into this world that my son, Jordan, was born, a baby with clubfeet along with a dislocated knee and dislocated hips. It was hard to look at his little footprints on the piece of paper. The doctors immediately started saying how he “wouldn’t be much of a walker,” and they began casting his feet when he was 9 days old. He had two surgeries on each foot and one on his knee, all in the first 15 months of his life. Plus, physical therapy, braces, walkers, crutches. Instead of cute little socks or letting him go barefoot, my baby was in casts for almost the first year of his life, and after that, braces almost 24 hours a day, including the brace with a metal bar between the feet. When he was around 4, he had more casting done to align his feet again--with his condition, his feet keep trying to go back to how they were when he was born. They keep trying to adjust his feet until he stops growing, and then they will stay where they are when he's an adult.

When he was about 2 months old and all of this was so new to me, with so many doctors appointments and so many dire prognoses, one day we took a break and went to Babies R Us. We went into the nursing/changing room in the back. I loved that they had this little room set up for us. It was so comfortable, with sofas, a changing table, room to just sit back and relax. Feeling relaxed for the first time in a while, I looked up from feeding him for a minute, and right in front of us on the wall was a huge probably 5 foot by 8 foot poster, a close-up of baby feet! I couldn’t escape!

Many times seeing those photos of the cute baby feet--and even the feet of my friends' and relatives' kids, who always seem to go around barefoot--tore at my heart. Why was it so easy for everyone else? Why were these babies crawling and then walking, not using any devices, not using any braces, when they were still SUCH BABIES, while my son talked like a professor so early, gave us “lectures,” as he called them, at age 1½, knew all the words to book upon book of nursery rhymes before he was 2, started sounding out words at age 3?

Someday I'll jump through puddles,
Take a stroll or run a race.
Someday I'll walk across the street,
Or maybe walk in space,
Someday I'll scale a mountain,
Or I'll join a ballet corps.
Someday I'll walk a tightrope,
Or explore the ocean floor.
Someday these feet will do some things,
That only heaven knows,
But for today they're happy
Just to wiggle all their toes.


Some babies can’t wiggle their toes and will grow up never wiggling them. The only toe Jordan can move is his big toe on his left foot. He has no movement at all in his right foot. But he does jump through puddles—using a walker and braces. He does whatever he wants. He doesn’t know about the stress this has caused me, having him not fit into the “mold” of the “perfect baby” that is drummed into our heads. He is just himself—rough, tough, sensitive yet strong, hilarious, and “all boy.” I now look back at his baby footprints and see something different—the feet were so tiny and were not aligned perfectly, but they are the feet of MY little boy.

Just 2 weeks ago, he took his first steps without his walker or crutches. I was happy about it, but suddenly I realized that it didn’t mean as much to me as it once would have. I know now that the important thing is that he can get around independently, and whatever device he has to use to do that best is okay with me. The doctor is now talking about another surgery for Jordan's feet and knees. I am looking into nonsurgical options because I now wonder if all of this has been too much, trying to align things to make them LOOK good. But if they're working for him... It's a hard balance. I don't want there to be any damage to his knees or feet from walking the "wrong way," yet I don't want him to go through anymore surgeries if they're not totally necessary.

In the meantime, the doctor said that the braces with the bar between them really aren’t doing any good for him anymore. So for the first time in his life, he does not have something on his feet while he sleeps. I lie there next to him in bed and make sure his bare toes are touching my leg. They feel so cozy and soft, like they belong there. The beautiful, perfect toes of my little boy.

Thursday, August 14, 2008

New Disability Blog Carnival Is Up!

The new Disability Blog Carnival is up! This is a great one with the topic "adjectives." This is my third carnival I've submitted something to, and it's so much fun writing the entries and then reading how others have tackled the topic as well. So get over there and start reading!!!!

Wednesday, August 06, 2008

Words That Sting

Sticks and stones
May break my bones
But words will never hurt me.

For this Disability Blog Carnival on ADJECTIVES, I knew I wanted to write about adjectives like “handicapped,” “crippled,” and “lame.” But this didn’t all coalesce in my mind until I was at Target today. I was in line, and the cashier, who was an older woman, was flirting with this young kid who also worked there, “razzing” him about his earring. He was a very tall and lanky and kind of awkward. After he walked away, she turned to me and said, laughing, “They call him Cripple.”

Everything came to a screeching halt. My mouth fell open. I didn’t say anything; I was too shocked. As I left, I wished I would have said any number of things to her. Maybe about my son—he uses forearm crutches and braces to walk; would she have used that “affectionate term” if she saw my beautiful boy? Maybe I should have said, “What you just said equates to nigger, thank you.” I have never said nigger out loud until today, when I described this story to my husband. Some words hurt too bad.

Just like some black people may try to do when they use the “n word,” some people with disabilities use the word crip, attempting to take back the word’s power. The thinking may be, outwardly or maybe unconsciously, "I will be the one to use that hurtful word. Then I have the power, not them." Whether this works, I can’t say for sure. I just know I don’t like “nigger” or “cripple” being used by anyone.

Handicapped is another one. There is a story that the word originated from disabled “beggars,” with their “caps in hand” looking for a handout. I know this isn’t the true origin, but still, this word bothers me. We have a disabled placard for our car, and sometimes we say we’re looking for a “handicapped space.” “Disabled space” somehow doesn’t sound right. But “handicapped” does bother me. The same thing with special needs—whose needs aren’t special to them—and even disabled. Kathie Snow at Disability is Natural writes: “’Disabled’ is also not appropriate. Traffic reports often say, ‘disabled vehicle.”

Two words that are used frequently and carelessly, often by young kids, are retard and lame. I remember last graduation season, a kid named Soeren Palumbo gave this speech about kids using the word “retard” toward his sister. He said, “Your mockery… is nothing but another form of hate."

“Lame” is also thrown around like it doesn’t mean anything or like it’s funny. A few weeks ago, I noticed that when I sent emails on AOL, a signature was being added to all my messages without my knowing it. This signature line was The Famous, the Infamous, the Lame - in your browser. Get the TMZ Toolbar Now!

I wrote to AOL complaining that I did not appreciate being forced to use this word ever, but especially when sending emails to disability studies groups and groups of parents of kids with disabilities. A tech person sent me a link to disable the signatures but of course did not discuss the political and social ramifications of using the L word.

Now, my son is 4 years old, and the adjectives that hurt him so far are nowhere near as harsh as the ones that hurt me. He is shorter than average for his age, and he has told me that kids at school say he’s “little” and “too little.” I watched him recently climbing up a blow-up moonbounce at a birthday party, and the other kids shouted, “Go, little Jordan! Go, little Jordan!” He smiled, but I know how that word hurts him. To think of how he’ll feel when he hears these other “ableist” words—cripple, lame, handicapped—flung at him… well, I just can’t describe how much my heart will break.

The only thing I can try to do is to let him know the meanings of these words and why people might use them, from my limited conception of why this is. I don't think I will use that platitude about the sticks and stones. I think he is already too advanced to believe that. So far he gets “everyone is different.” That is a frequent conversation at our house. He came home from camp the other day and said two kids there use wheelchairs. He continued: “Some people use wheelchairs, some people use walkers, some people use ski poles—that’s me!—and some people walk without anything. Everyone is different.” I think I might try to get him to change that to unique.

Thursday, June 05, 2008

If I knew then...

When my son was some orthopedic issues, I thought I knew what it meant because I had just spent the last 5 weeks of my pregnancy with a broken ankle. I was miserable and not a “good patient.” I complained constantly, my arms hurt from hoisting myself up, and I was just downright miserable. Maybe some of it was because I was 9 months pregnant and walking on one leg on crutches, but who knows how I would have been otherwise.

On top of what I already “knew,” the doctors had dire predictions for Jordan. The first one said he might have trisomy 18, meaning “mental retardation, heart problems, and die before age 1.” We took him to so many specialists those first few months. How scary is it to take your newborn to a neurosurgeon? They said he would never walk, and he would be incontinent. He had some kind of growth on his brain. The cyst on his nose might be brain tissue coming down through his nose, and any kind of little cold might lead to meningitis. It went on and on. Waking up a few days a week to take him to more appointments, only to hear more horrible things that were going to happen to him.

I recently edited a book that prepares people for taking a nursing exam. The author stresses that giving “false hope” is unethical. Nurses shouldn’t say, “Everything will be okay” when it might not be. But is it also unethical to give only worst-case scenarios? That seems to be all doctors give these days. I understand they want to protect themselves from malpractice suits. But would it be so bad to give a little hope once in a while? Anyway, can hope ever be "false?"

I wish just one doctor or other “professional” would have told me that yes, your child may have some medical issues, but above anything else, he’s a KID. The doctor visits, the surgeries, the physical therapy and evaluations become just things you have to do, and your child grows up anyway, despite everything. It really hit me one day when he was about 1 year old, a quiet moment sitting at the table with him eating French fries. And I realized this is normal. This is just our life. The regular, everyday moments had finally surpassed all the medical stuff we had to do. He was growing up despite what everyone said. He was just a regular kid, with likes and dislikes, things that scare him and things that make him laugh. The doctors never tell you that your child will learn the alphabet, make friends, love movies, sing songs, play the drums, love cutting things out of magazines, and think he's a pirate. To them he is only a medical diagnosis. If I had known then what I know now, the start to our journey wouldn’t have been so difficult and frightening.

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.