Archive for the 'quality of life' Category

Things done and undone

July 29, 2015

to do list (800x450)

Special needs parents always carry a burden–the things left undone. There are always more therapies, therapists, exercises, specialists, drugs, vitamins and research that we could take on. Early on, I realized that the best thing I could do for myself and my child was to say “no.” We both have very little patience–if something doesn’t work quickly and easily, we abandon it.

We’ve neglected exercises, canceled appointments with therapists, walked away from whole categories of specialists and thrown away medications when the benefits failed to outweigh the time, effort and side effects. I don’t feel regret over any of these things–my biggest priority is that Chloe have a happy life, and she can’t do that when she’s swept away be a stream of appointments and medication.

But there is always the list. The list of things I wish I did, or wish I did better. As a mother, as an employee, as a citizen, as a person. The list feels especially heavy today, so I’m dumping it here, in no particular order:

Things I haven’t done:

1. Brushed Chloe’s teeth today

2. Written enough thank you notes and birthday cards

3. Renewed the registration on my car

4. Figured out the best way for Chloe to use her expensive iPad/bluetooth switch combination

5. Written (until now!)

6. Managed to work from home today, as I nursed Chloe through a stomach virus

7. Had one of my photos go viral on Instagram

8. Found a way to make sure Chloe does not spend the last two weeks of summer parked in front of the TV.

9. Organized more play date with Chloe’s friends (and she has quite a few, of all ages, who probably wish they had gotten to see her more this summer.)

10. Exercised regularly

11. Cleaned the oven

12.Gotten all that paperwork from the doctor that I promised I would get about 2 months ago.

But to balance things out, here are some things I have done:

1. I wrote a blog post today

2. I managed to find a job I love, that has enough flexibility that I can stay home with a sick kid all day at the last minute if I need to.

3. Done (roughly) an hour of therapy a day with Chloe, and watched her improve her ability to control her head, hands and voice, presumably because of this therapy

4. Came up with a recipe for homemade tube feeding food, and tweaked it according to Chloe’s needs.

5. Organized a yearly tour of local breweries, which is pretty much the only big social event of my life.

6. Found an amazing guy

7. Introduced Chloe to her new favorite TV shows: Doctor Who, Buffy the Vampire and Futurama (the guy gets credit for that one)

8. Found a way that Chloe can say “yes” and “no” and continued to improve upon it.

9. Painted the living room and hallway in my house and didn’t leave a whole lot of the trim unpainted.

10. Laughed, a lot

11. Listened to music

12. Thought, at least once a week, well at the very least, twice a month “I have a good life.”

In her own words

March 3, 2013

a white board with large magnet letters on it

Chloe’s communication device. I take off Q, X, Y and Z to make more room for the other, more popular letters

Today, Chloe and I had a communication breakthrough. She was lying on her mat with her dolls, when I noticed she was frowning. This is always frustrating for both of us: something is wrong and she can’t tell me what it is. And when the frown appears, the tears are always coming soon. I carried her to her room as she cried and laid her in her bed. Should I give her medicine? Try to figure out what’s going on with our yes/no system? Let her cry it out? This is a common frustration for parents of very young children, but Chloe and I have been dealing with it for 9 years, and we’re both getting sick of it. I decided to try to the magnet letters.

The magnet letters are large and soft, and each of them is a perfect size–just large enough to fit in Chloe’s hand. I arrange them on a white board that is about a foot and a half square and hold the board at Chloe’s right side, and she chooses the letters one at a time. Sometimes it takes her a couple tries to get the one she wants, so I always double check before I write them down.

Chloe has an iPad, and we’ve tried using a special communication device, but grabbing letters from the board just works better than hitting buttons on a touch screen. We’ve actually been using this system for years, in what I would call “low risk/high reward” situations. Basically, we use it to name her dolls. I’ve tried using it for other things, like spelling practice, but Chloe doesn’t care enough about showing off her spelling skills to make that kind of effort (the reward isn’t high enough).

And when she’s upset, it always seemed too stressful for both of us. Trying to coordinate her arms and spell words and make me understand what she’s trying to say is hard enough under normal circumstances, and when Chloe’s uncomfortable and crying, it just seemed like too much potential frustration (the risk is too high). Usually, I rely on yes/no questions when something is wrong, and we slowly narrow down the answer.

But today, I decided to give the letters a try. Grabbing letters off the board has been getting easier for Chloe–the last time she named her dolls, she selected long strings of letters with ease. And at nine years old, Chloe seems pretty comfortable with spelling. Of course, her skills have never been put to the test like this, but it seemed like a good time to try.

I was nervous. What if it didn’t work? What if we ended up with a nonsensical string of letters and the whole thing was just frustrating and disappointing for both of us? It was a risk worth taking, I decided.

I held the board up, and her hand immediately settled on the “H.” At this point, I had a pretty good guess at what she was trying to say. She had a headache. Not an existential crisis, not some way I had disappointed her, not some secret grievance she’d been nursing for days. Almost anticlimactic. But we pressed on.

I was a little worried that I would influence her, that since I had guessed she was spelling “headache,” I would somehow cue her to actually spell that. It’s something I think about a lot when it comes to Chloe’s communication, but all I can do is try to stay objective, try to do everything I can to make sure it’s her, not me, who is doing the work. The next letter was an E, and then Chloe hesitated, frowning.

“It doesn’t really matter how you spell it,” I said to her. “You don’t have to get it perfect, just get your point across. It’s okay to leave out letters.”

But Chloe wanted to spell it right: she chose an A next, and almost immediately, her hand moved to the D. We were halfway there.

“Do you want to say headache?” I asked, holding out both my hands for a yes or a no. The answer was no. Now I was stumped. What could be wrong with her head aside from a headache? Maybe it was an existential crisis. Nothing to do but press on.

The next letter was H. Then U, R, T and S. I smiled. Chloe did have a headache, but she was also determined to say it her way. She didn’t want to take short cuts–didn’t want to leave out letters or let me substitute my words for hers. She wanted to tell me her head hurt. And she did.

My complicated thoughts about the Angels Pageant

January 31, 2013

a close-up of a plastic crown

image courtesy of Allison Ko via Flickr

People keep asking me if Chloe is going to be in the Angels Pageant. And I want to say “do I LOOK like someone who enters her kid in a beauty pageant?” But I do look like someone who enters her kid in this pageant, because it’s not a beauty pageant exactly, it’s a pageant for disabled kids. They get dressed up in fancy pageant gear and get their pictures taken with crowns on. The website is full of grinning girls in wheelchairs. And, since this is a feel-good, “exciting and super-fun experience,” I assume everyone is a winner.

And when you have a disabled kid, you do stuff like that. There are so few activities out there that are guaranteed to be fun for disabled kids, you leap at every chance to give your kid something exciting to do. But I have complicated feelings about this one, and here they are:

  1. This is great. The kids love it, the parents love it. The kids get to feel pampered and recognized by people other than their parents, which for many of them probably doesn’t happen very often.
  2. So why do I feel so repulsed?
  3. When I see “beauty pageant” and “kids” together, all I can think of is Honey Boo Boo.
  4. At the Angels Pageant, they believe every child is a gift from God. Okay, fine, but is this religious? Am I expected to be religious for this?
  5. The pageant is open to “any boy or girl newborn to 105, with a special need,” and the website constantly refers to children.  So apparently, if you have a disability, you are a perpetual child.
  6. It’s “not about ability.” It’s about celebrating our kids just for existing. That’s not enough for me. My kid has abilities. Every kid, no matter how disabled, has something to offer the world, and these things are rarely celebrated. Other kids are recognized for what they can do, why not kids with disabilities?
  7. I’ll admit, number 6 is probably a politically correct attempt to say it’s not about disability. In other words, it’s a break from the constant obsession with large challenges and tiny achievements that make up our kids’ lives. And that’s great. But it IS about disability. Because it’s for disabled kids. It’s not a typical beauty pageant. It’s a disability pageant. Just admit it.
  8. I’m not against this in general; it’s probably the greatest thing ever for some kids. But I don’t think we’ll be doing this. Chloe already goes to drama camp, where her awesome teacher finds ways to make her a star right alongside the typical kids. If we want to get her dressed up in taffeta for pictures, I’ll take her to my friend’s photography studio. Extra attention from adults outside her family? She already gets too much of that, because she’s a charmer. Before I had Chloe, my plans for parenthood never, ever included a beauty pageant. And I’ll be damned if I let a diagnosis change that.

A Wheel family dinner

March 31, 2012

two parents and two kids eating dinner

This is not my family--we never eat that much salad.

My husband and I both grew up with Family Dinners. Two parents, two kids gathered at a round table, gulping down a square meal. Talking, sulking, laughing, teasing, scolding and trying to enjoy one another’s company. And often succeeding.

So naturally I assumed this is what our family would do. And for a while, we did. Jon or I cooked a meal, dished it out at our tiny table, rolled Chloe’s wheelchair and feeding tube up to one side, and had family dinner.

But a successful family dinner depends on communication, and for Chloe, communication is hard. We tried to include her, asking questions and putting down our forks in order to help her answer them. But there is only so much small talk you can make out of yes/no questions, so Jon and I often lapsed back into “grown-up talk” while Chloe got bored and grumpy.

We kept at it, though, because I thought it was a rule: “good” families eat dinner together, not separately. And definitely not in front of the TV.

I don’t remember how we started watching Wheel of Fortune at dinner time. We’d known for years that Chloe liked it, and for a while, we kept it as a once-a-week tradition, a special indulgence.

These days, however, it’s the norm. Instead of gathering around the table, we line up in front of the TV to watch the daily antics of Pat, Vanna, and a random assortment of letter-guessers.

Chloe likes it when Jon and I can guess the puzzles before the contestants, and she loves when I start yelling “don’t buy another vowel, you idiot, the answer is obvious!” We cheer together when someone wins the bonus round, and grumble collectively when the puzzle includes too many Q’s and W’s for anyone to have guessed.

I like to think that Chloe gets some spelling and vocabulary practice out of the whole thing, but mainly, we enjoy sharing this experience, as a family.

On Fatherhood and Disability: My Happiest Moment

March 26, 2012

pages from a children's book showing the alphabet

by Jon Medders

A few evenings ago, my daughter and I shared a moment. It was the kind of moment I had let go of. One I thought she and I would not get to share.  My daughter is eight and has cerebral palsy.  She is in a wheelchair, has minimal motor control in her upper and lower body, and she is non-verbal.  This moment I want to tell you about was one of the greatest surprises and delights of my life so far, and it has to do with the fact than she is non-verbal.

Don’t get me wrong: a child doesn’t have to be verbal in order to share many great moments with her.  Chloe and I share almost more joy and connection than a grown man can handle. We share laughter, hugs, books, movies, walks, roughhousing, dancing, music, love, sadness, meditation, prayer, imagination, and a divine appreciation of wackiness in the world.  She teaches me, over and over again, how to jump on her wavelength and stay there and feel timeless.

But I do want to tell you about some of the things we don’t get to share. This is important because, like all parents of a child with a disability, I feel grief.  And grief, if not acknowledged, can turn into darker things, like bitterness or withdrawal.  So I am not looking for any pity, here, just for you to witness a few things that are sad to me before I take you to the moment of delight that I really want to share.

Things I grieve:  I will never get to see Chloe’s first steps, because she will not ever walk.  I will never get to teach her how to catch fireflies or frogs. Or how to defend herself from a bully. I may never get to take her to some of my favorite caves or waterfalls, even ones with hiking trails, unless they are super-accessible. I will never get to listen to her side of the kinds of deep, philosophical conversations I imagined—when my wife was pregnant— having with her adult-self, over wine.  We will not dance, except with me spinning her in her wheelchair (which actually is pretty special).  We will not race on bicycles.  I will not teach her how to build a fire or juggle or make homemade pizza.

These things are sad.  So is this:  until this past week, I thought I would never really know what it felt like to hear Chloe say the word, “Dad.”  But now I do.  Are you ready to share my moment of delight?

Here’s how it went down:  My wife was out of town, and I was feeling especially close to Chloe and kind of nostalgic. At bedtime, instead of reading a chapter book, I decided to pull Chicka Chicka Boom Boom off her shelf, one of a handful of books I read to her at least a thousand times once when she was a baby.

I asked her if she remembered it, and—with her yes-no hand signals—she told me no.  So I told her it was one she loved as a baby, and I read it to her the same way I did when she was a baby, beating a rhythm with my hand and kind of rapping it.  Three pages in, her face was wide with a smile, and her bright eyes showed me that, on some level, she did remember.

As we progressed, we were together on that wavelength I mentioned earlier, and on this evening, it was a little like being bathed in golden sunlight, the happiness I felt in those moments.  And then it got better.  On the inside back cover of Chicka Chicka Boom Boom is an alphabet page.  For old-time sake, we sang the alphabet a couple of times.  I noticed, as we did, that Chloe pointed to some of the letters.

So, then, I asked her to point to some specific letters.  She nailed, “H,” and “Y,” and, “M,” Excited, I asked her if she wanted to spell her name.  She signaled yes, and proceeded to methodically reach her hand directly onto C-H-L-O and E.  We have used letter boards before, but she had never demonstrated such precision.  So then, I had an idea.

“Chloe, is there anything you would like to tell me?”  This is the first time I’d ever asked her such a question.  She smiled, as if she’d been waiting years for me to ask it, and signaled, “Yes.”

So as I held the letter board steady, she made eye contact with me, to make sure I was paying attention.  She placed her hand on, “D,” and then she looked straight into my eyes.   I said, “D.” and she smiled and looked back to the book.  “A.”  Again eye contact.  Again, me saying the letter, and her smiling with what almost seemed like patience.  She returned her hand to the book again, and hit.  “D.”

“You just spelled D-A-D!”  She smiled softly, now, and I could almost hear her thinking, “Of course I did.”  Tears were in my eyes.  “I asked you to tell me anything you wanted, and you just told me, ‘Dad.’ Chloe…this is so special to me…” And then I realized there was nothing else to say, that she felt it all, too and through the tears I started laughing, and so did she.

A few days ago, I believed that I would never know what it would feel like to “hear” my daughter call me, “Dad.”  Now I do.  The more I think about it, if you look closely at the way life works, joy is always right there alongside grief; maybe the two are even made of the same substance.

The small town of Special Needs

December 10, 2011

main street of a small town

image courtesy of incendiarymind via flickr

It’s been a while since Chloe participated in Miracle League baseball. On the surface, this is because of logistical challenges, but really, it’s because I never imagined that motherhood would involve hauling my kid to a team sport every Saturday, and I’m still trying to come to terms with this.

Obviously, I was fooling myself. My husband played just about every sport there was, and my brother even did his time in Little League. But I guess I thought my unathletic genes would win the day, especially if we had a girl. And when we had a girl with a significant physical disability, well, I thought I was completely off the hook. Listening to the tormented shouts of parents in the soccer fields behind our house, I always thought, “at least I’ll never have to do that.”

But I do have to do that. And yes, I’m very glad that Miracle League exists so Chloe has a chance to play baseball. But here’s the thing: that’s her only choice, baseball. If she didn’t have a disability, she could play soccer or rugby or  do yoga or hip-hop dancing or whatever kids are into these days. Or she could do none of these things. But she’s a disabled kid, and around here, disabled kids, they play baseball.

We live in a medium-sized town, but as a family with a disability, we also live in the very small town of Special Needs. As we look for services that are accessible and appropriate for Chloe, our options shrink to small-town size. In Special Needs, there are only a couple of schools. There are only a couple of doctors and dentists, and there are no summer camps or drama camps or art programs. In Special Needs, there are very few play grounds, and most of them don’t have swings.

It’s not anyone’s fault that the town of Special Needs is so limited. After all, it has relatively few citizens, and every year, it expands and adds more opportunities. But it’s still a small town, and small towns can be stifling.

In a larger town, you get the benefits of a diverse population. You can be exposed to different lifestyles and cultures, but you also have more opportunities to find people and organizations who share your values. In a larger town, parents who are looking for something out of the ordinary, something that caters to their artsy or literary or just plain kind of oddball values, can find places where other weirdos like them gather and begin the process of molding their kids into future high school newspaper editors or drama club members or viola players.

But in Special Needs, everyone plays baseball, so baseball is what you get.

What’s wrong with you? (The best conversation of our lives)

November 12, 2011

a series of icons depicting various disabilites, young children and a smiley face

image courtesy of hugovk via flickr

I am always aware of how people perceive my daughter.  Most adults smile at Chloe and talk to her like she’s a regular kid. Regular kids, on the other hand, are less reliable.  Parents of disabled kids live in fear of the day when that precocious five year old swaggers up and demands, “What’s wrong with her?”

Something like this happened to some friends of ours.  She and her son were in the grocery store when a little boy appeared in front of them.

“Why’s he in that…thing?” the kid asked, pointing at the wheelchair.

“You need to learn some manners,” my friend snapped, and pushed her son away.

Experiences like this break a parent’s heart, possibly hurting us more than they hurt our children, at least when they are young and don’t understand the degree to which they are different from other kids.

How can we explain that their very presence makes people confused, that for the rest of their lives, they will face stares and rude questions?

For a while, I assumed that when a kid asked me “What’s wrong with her?” I would reply that there was nothing wrong with Chloe.  But when I really thought about it, this seemed ridiculous.

“There’s nothing wrong with her” is exactly the stupid kind of adult remark that kids see right through.  Because there is obviously something wrong with Chloe.  A brain injury is wrong–one of the many things, big and small, chronic and temporary, physical and emotional, that go wrong with all of us.

One day, when Chloe was about four, we were at the grocery store.  Chloe was in her usual position, lounging in her wheelchair and surveying the world around her.  As we cruised past the bread aisle, I heard a small voice say, “What’s wrong with her?”

I turned around to see two kids, a tall black kid who looked about ten years old and a tiny blond kid, dressed in a basketball shirt that came down to his knees.  The blond kid hesitated before speaking again, and his friend stared at the floor, embarrassed.

“I mean, why is she in that wheelchair?”

I turned Chloe’s wheelchair to face them.  She grinned at them, and raised her arm in an awkward wave as I explained cerebral palsy.  “So her mind is just like yours,” I told them as they listened politely, “but it’s hard for her to make her body do the things she wants it to do.”

The blond kid nodded.  “So you mean she’ll never…” he paused again, as if he wasn’t sure he wanted to ask his question, and my mind raced, wondering what he was going to say.

She’ll never go to college?  get married? have a job?  Of course, I would tell him she could do any of these things if she wanted to.  I wouldn’t admit they were questions I wrestled with every day.

He took a deep breath and finished his question.

“She’ll never run track?”

I grinned.  “No,” I admitted.  “She probably won’t run track. But then, lots of people aren’t that good at running track.  I can’t run track.”  The boy gave me a pitying stare.

“You know,” I continued, “Chloe’s not the only person who has challenges. Everyone has something that’s hard for them.”

The other kid smiled.  He had been standing there quietly the whole time, and now he held up his right hand, which had been out of sight behind his back.

“I’ve got this,” he said.  His hand was very small, and some of the fingers were missing.  The fingers he did have looked incomplete, and they were fused together.  The skin on his hand and across his wrist was tight and shiny.

“Exactly,” I said, and we grinned at each other.

The blond kid thought for a minute, trying to pinpoint his most impressive disability.  Finally he looked up.

“I’m short,” he declared.  He was short, about half the height of his friend.  Before he started talking, I had assumed he was younger than the other kid, but now I figured they were both about ten.  The track thing was making more and more sense.

“Yeah,” I said.  “See, we all have things that make us different.”  I smiled down at Chloe, who grinned back at me.  The four of us stood there for another minute, feeling a little awkward, but not quite ready to go our separate ways.  Finally, I put my hands on Chloe’s wheelchair handles.

“Well, it was nice talking to you,” I said, as I turned her toward the milk aisle.

“Yeah,” said the short kid.  His friend smiled and waved. As Chloe and I walked through the store, finishing our shopping, I felt a little giddy.  Maybe that kid’s question was rude.  Maybe someone should have taught him not to go up to strangers and ask “What’s wrong with you?”

But I was happy that no one had, because thanks to that kid and his rude question, Chloe and I had just had one of the best conversations of our lives.

Children’s hospitals can do better

November 6, 2011

an old neon sign pointing the way to a Children's Hospital

image courtest of roens, via flickr

It seems like every time a children’s hospital gets mentioned in conversation, someone has to talk about how wonderful they are, how they save kids’ lives. Well, of course they do, it’s their job. But like healthcare in general in this country, children’s hospitals need to do better.

I have several horror stories from our local children’s hospital. There was the time our doctor’s face turned white when he realized a nurse had put the wrong medication in Chloe’s IV. The time we spend 8 hours in the waiting room with a six-month-old whose head was covered in EEG wires, only to find out the wait and the wires were a mistake. And the time a neurologist assured us that one of the benefits of Chloe’s seizure medication was that she would swell up so much that our underweight daughter “would look fat.”

But one instance made me really understand the pitfalls of American healthcare, even when it’s in a hospital covered with bright colors and cartoons.

A couple of years ago, Chloe had a huge seizure that took a long time and a lot of drugs to get under control. In the emergency room of our suburban hospital, the atmosphere was of controlled chaos and supressed panic, especially when the doctor couldn’t find the right size tube to intubate her. Her oxygen level was dangerously low, and he finally decided to put in a tube that was slightly too small rather than deprive her of oxygen any longer. Then it was off to the Children’s Hospital.

There, the doctors explained that, while she no longer needed to be intubated, they wanted to leave the tube in for a few more hours, because they wanted to give her an MRI (because of past breathing issues, Chloe has to have a breathing tube when she is sedated for procedures like MRIs).

So the tube stayed in. And it became a concern to every nurse and respiratory therapist we saw, because it was too small. Air was leaking our from around it, making some machine beep all the time. Everyone told me it was no big deal, but they couldn’t stop looking at the numbers on the machine and discussing it among themselves. In addition, nurses were having trouble suctioning the tube–getting the mucus out of her lungs.

After several hours of this, we got the MRI. I had been tempted to refuse it, simply because it seemed like one of those expensive, unncessary procedures that hospitals are notorious for insisting on. The doctors explained that they wanted to check and make sure there wasn’t a new problem in Chloe’s brain that had caused the seizure. But there were already plenty of reasonable explanations:  Chloe has a brain injury and a history of seizures, and at the time of this seizure she had a very high fever.

I wanted to say no, but in that atmosphere, it was hard. How would I explain to the doctors and our family that I didn’t want to do everything they thought was necessary for my daughter? That I wanted to save taxpayer’s money (Chloe has Medicaid) rather than get a test they said she needed? So I kept my mouth shut, not realizing at the time that there were better reasons than money to refuse the test.

Hours later, after the MRI, the tube came out. Chloe wheezed and gasped, and it took several doses of steroids to calm her breathing. The respiratory therapist theorized that the smaller tube may have caused inflammation by moving around too much, and I realized we should have gotten that tube out hours before.

After a couple more days in the hospital, they sent us home. Chloe still had a high fever, but now we had seizure medication and an emergency dose of Valium to stop a big seizure–which I had to know to ask  for, since it wasn’t offered to us.

Hours after we returned home, Chloe had another seizure. We gave her the Valium and called an ambulance. At the hospital, she was diagnosed with pneumonia, and the doctor explained that it had several possible causes, one of them being the intubation.

The combination of seizures and pneumonia started a muscle spasm that racked her body for days, and when that finally ended, she had a sinus infection so bad she could hardly breathe. In all, she was very sick for an entire month.

Did that tube cause the pneumonia, and subsequently the second seizure, muscle spasms and sinus infection? I have no idea. But I do know that the MRI didn’t give us any new information, cost taxpayers thousands of dollars, and came with risks, like pneumonia from leaving the tube in longer, that were not discussed with us beforehand.

Yes, our children’s hospital save lives, but every time we’ve stayed there, we’ve been subjected to questionable procedures, thoughtless remarks, and just plain stupid mistakes. Children’s hospitals can do better.

Special needs parents: our own worst enemies?

October 29, 2011

through a glass door, a wheelchair is visible

photo courtesty of Tom Watchel, via flickr

Once, I heard a woman say that she was asking her son’s school to remove the post between their two front doors to accomodate his wheelchair. “The other day, his pinkie got stuck against the doorframe,” she said, cradling her own finger. “It made a mark.”

Now the idea of this kid’s little finger jammed against the door is painful, but wait–this was a front door to a school, wide enough for a wheelchair, probably wider than most of the doorways in their home. Why was his finger getting jammed? And what about all the other doorways he would have to go through, every day for the rest of his life?

I can relate to this story, because it happens to Chloe all the time. Going through doorways can actually kick her dystonia into gear and make her throw her arms out at exactly the wrong time. But was I asking our school to spend thousands of dollars replacing their doors to accomodate her? No.

At the time I heard this story, my husband was teaching at a public school, trying to help high school kids who had trouble reading. For many of these kids, financial, emotional and societal obstacles stood between them and an education, but was the school going to pay thousands of dollars to make it easier for them to get through the door?

News flash: schools don’t have a lot of money, and, for teachers who see dozens or even hundreds of needy students every day, a demand like this must sound frivolous. And this could contribute to the fact that special parents don’t always have the, uh, best relationship with their public schools.

Now don’t get me wrong, I believe in equal access: wheelchair ramps, special equipment, accomodations on homework and tests, all that good stuff. My husband and I demanded the school hire a full time paraprofessional without a twinge of guilt, because that was the only way Chloe could fully participate in a regular classroom.

But I think the low tech solution is often, maybe even usually, the best, and many parents never look for the low tech solution, if they think they can force someone to pay for the expensive one.

I used to press my fingers against Chloe’s arms as we went through doorways, until I realized that we had a great “teachable moment.” Why not use this as an opportunity for her to take responsibility for her own body? Now, we always tell her to pull her arms in when we go through a doorway. It took a lot of practice, but now she does it almost every time.

I don’t know anything about this woman’s son. I don’t know if he has the physical or mental capacity to move his own arms out of the way as he goes through a door, but it’s possible that no one ever thought to ask him to do it, and maybe someone should.

From watching Chloe, I know that kids with disabilities will put up with a lot if they don’t think they have a choice. Someone who doesn’t know he has the power to move his arms will just take the bruises and scratches, until another person figures out how make them go away.

But if you can empower him in that situation, even just by talking about it and helping him hold his hands out of the way, he just might start looking for other places where he can make choices and demand the things he needs. And isn’t that what equal rights are all about?

Pave paradise, put up a parking lot

November 10, 2010

Where's the wheelchair ramp? (photo by Jeff Hester)

I’m pretty sure Joni Mitchell was being ironic when she said that, but the thing is, an unpaved paradise…not wheelchair accessible. Other things that are not wheelchair accessible: the beach, the Grand Canyon, anywhere with lots of snow on the ground, and the picturesque spot next to a waterfall at the bottom of a rocky slope where my husband proposed. Which my daughter will never see.

I’m usually a look-on-the-bright-side kind of person, and my default attitude about having a kid with a disability is “No problem–it won’t hold us back any!” But this way of thinking is a privilege that comes with living in a world full of technology. And sidewalks. And there are places where technology (and sidewalks) can’t, or shouldn’t, go. And sometimes, when confronted with these inaccessible paradises, I have to admit that living with a disability (your own or someone else’s), well sometimes, it kinda sucks.

%d bloggers like this: