Posts Tagged ‘special needs’

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.

Labels, Labels, Labels

February 23, 2013

a picture of two blank labels

image courtesy of Allspire via flickr.com

We live in a world of labels. The wrong one can be devastating, but a good label can get across a complicated idea, make it easier to understand and talk about. Here are some of the labels I think about all the time.

Cerebral Palsy

Although it sounds fancy, this label is not a medical term or a diagnosis. Chloe’s official diagnosis is “static encephalopathy with spastic quadriplegia and athetosis.” Which means she has a brain injury that affects her muscles, and a simple way of saying that is cerebral palsy. I say sa-REE-bral, but some people say SER-bral. I can’t figure out if this is a regional thing or what.

Disabled

Our go-to word. Disabled can be seen as problematic for its negative quality (not-able), and yeah, some conditions could be more accurately described as differently abled rather than not abled. But I think in Chloe’s case, it is both accurate and useful. Let’s face it, Chloe is unable to walk. And when we’re faced with stairs or mud or snow or a bumpy field, it’s a pretty big hindrance.

Disabled often gets replaced with terrible euphemisms, because people who are uncomfortable with disability try to hide it behind sentimental or vague terms. This is especially true when it comes to kids. The worst one I’ve heard is extra-exceptional. As in “I just love working with extra-exceptional kids!” When a therapist said that to me, I had to fight the dual urges to laugh in her face and walk out of the room. I won’t have a grammar-geek fest over how ridiculous it is to modify the word exceptional with an adverb like extra, but if you would like to do that, here is the definition of exceptional. 

Special Needs

A euphemism for disabled. Not as bad as extra-exceptional, but like that term, special needs has an element of compensatory sentimentality, which makes it sound patronizing. Special needs and its cousin, special ed, get used pejoratively all the time. Once, another mom in a therapy waiting room woman told me that she homeschools her two children (both on the autism spectrum) because “special ed teachers are usually special ed themselves.” She probably didn’t realize that with her obnoxious insult to teachers, she was also insulting her own kids.

Kathy Snow of disabiltiyisnatural.com doesn’t like this term, pointing out that the “special” needs of people with disabilities are just variations on the tools that we all need to make it through life. Which is a good point. And disability is natural, not special, and it should be seen that way. However, when your kid is the only one in her the school who uses a wheelchair and can’t speak, her needs are pretty damn special for the people who have to meet them.

Handicapped

Totally out of style these days, but, after looking up its history on a very entertaining Snopes.com article, I now have a special place in my heart for the word handicapped. Forget about the whole “handicapped came from a time when disabled people had to beg in the streets” myth. Basically, the horse-racing version of this word is the original: as Snopes puts it, the word has always been “a term for leveling out the field by making the stronger contestant bear a penalty.” So I would be proud to call Chloe handicapped, since it implies that without her physical limitations, she’d be too awesome for this world.

Also, is it just me or is handicapped parking still the only thing that sounds right? I sometimes try to say disabled parking, but it sounds so awkward.

Typical

When Chloe was a baby, I realized I needed a new label in my life—a term to describe other people’s kids, the ones that weren’t disabled. As in, “you don’t understand because your kid is…” I came up with regular, which I kind of liked because it implies a boring, everyday quality. But that does that mean Chloe is irregular? Like the cheap clothes you get at TJ Maxx? Then I discovered what other people use, and it’s perfect: typical.

I love this word, because its opposite, atypical, is not an insult. Atypical is not abnormal or irregular; it’s interesting, even refreshing for those of us who enjoy variety in life.  And although typical is not a negative word, you can say it with a tone of scorn that’s really satisfying when you’re feeling resentful. “Your seven-year-old just read all the Harry Potter books in her spare time between soccer and gymnastics? Typical.

Mentally retarded

This one is still used as a diagnosis, though that is changing as it gets a reputation as “the R word.” It will hopefully soon be completely replaced with “intellectual disability” so that the medical diagnosis will no longer share a term with a stupid insult. But the problem with retarded is not inherent in the word. Before we had retarded, we had idiot and moron, both words that began as descriptions of a disability and turned into pejoratives. This happens because we live in a world where people whose brains function differently are not usually respected and valued. And as long as this is the case, suggesting that someone is anything other than neuro-typical will continue to be an insult. But, luckily, it should be a little more difficult for middle school kids to use the term “intellectually disabled” when referring to someone they don’t like.

I suspect this label is overused. For example, I don’t think Chloe has an intellectual disability, but she’s probably been labeled that. People are quick to generalize about abilities and disabilities. Chloe can’t speak, a very specific physical disability. Which means she can’t tell you what she’s thinking. Which means that many people assume the answer to “what is she thinking?” is “not very much.” How many other people labeled intellectually disabled actually have very specific disabilities (physical, sensory, expressive) that hide their intellectual abilities from the world?

An intellectual disability isn’t a devastating thing–people with this type of disability can have happy and productive lives. But being mislabeled this way is like being strapped into a wheelchair you don’t actually need.

No one should be reduced to a single word. Chloe is much more than disabled, much more than a kid with CP. But when I need to explain what is exceptional and atypical about our lives, I need these labels. I choose them carefully and probably overthink them sometimes, but they get the job done.

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.

What makes a great doctor’s appointment?

December 8, 2012

a stethescope with a Winnie-the-Pooh toy attached

image courtesy of pixel_bunny via flickr

Recently, Chloe and I had an appointment with her neurodevelopmental pediatrician. This is a fancy term for a doctor who deals with kids with disabilities. At these visits, we talk about everything: medication, nutrition, equipment, school and more.

Dr. K is the one medical professional who is in a position to help us see the big picture, to piece together medical issues like prognoses, medicines and therapies  with social issues such as school, caretakers and community access, and to balance all these things into a healthy, sane life for our little family. It’s quite a challenge. Which is why it’s so important that this doctor be awesome. And she is. Here’s why:

She is tuned in to Chloe.

Most pediatricians are good with kids, obviously. But I have been to appointments where Chloe was an afterthought. Dr. K talks to Chloe, on her level. Whenever she can, she includes Chloe in the conversation and addresses question to her, even though it would be easier to let me speak for her.

She understands that the most important thing she can do for Chloe is have a productive relationship with me.

It doesn’t matter how much education and expertise a doctor has; if she doesn’t have the respect and cooperation of her patient’s parents, her advice is useless.

I’m not afraid to reject doctors’ advice. I have told a neurologist to put away his Botox, because we’re not interested. I have left one doctor’s office only to call another and get a second opinion on medication dosage. I have thrown away prescriptions, canceled therapy appointments, completely ignored advice. And Dr. K understands. She must do more than make pronouncements. She has to win me over. And she usually succeeds, because

Her recommendations are based on our specific goals.

Every child is different, and every child with CP is really different. But many doctor’s and therapists use a blanket approach, treating every problem they see, because the more CP symptoms they can get rid of, the closer you get to normal, right? Tight hamstrings? Monthly shot of Botox. Lots of extensor tone? That calls for a Baclofen pump.

But interventions always come with risks and sacrifices. Medications have side effects. Surgery has risks. Every piece of equipment we get costs money that could be spent on something else. Even therapy appointments are a commitment of time that could be spent on other things.

In Dr. K’s office, we talk about problems, but we also talk about why and how and if we need to fix them. Chloe’s hamstrings are tight, yes. But what function will she gain from Botox? We could get a $2000 stroller with Medicaid funds, but how much would we actually use it? Is it a good idea to take Chloe to physical therapy after school instead of using that time on homework?  Dr. K is honest about the drawbacks, realistic about the gains, and respectful of my concerns and priorities.

She understands that we can’t do it all.

I was a little nervous about admitting to Dr. K that I hadn’t been using the knee immobilizers she had recommended to stretch Chloe’s legs. They were hard to put on, uncomfortable and inconvenient. And our lives had been too hectic for something like that. When I explained this to Dr. K, she surprised me.

“I am so glad you didn’t worry about those,” she said. “With everything else that’s been going on, it sounds like it was just too much for you, and I’m glad you can see that.”

Wow. A doctor who understands that her patients have full, challenging and complicated lives, who is able to see medical concerns in the context of the bigger picture–that is a rare and valuable thing.

She cultivates an environment of honesty and trust.

All of these things add up to a doctor’s visit where I feel free to really explore what’s best for Chloe. Because I know can be completely honest with her, Dr. K gets a clear and accurate picture of our lives. And because she respects my role as Chloe’s “real” primary  care provider, and because she respects my intelligence and decision-making skills, Dr. K can discuss treatments and interventions thoroughly, in all their complexity. She can be confident I will follow through on what we discuss, rather than forgetting everything the moment we leave the building. Our appointments tend to be long, but they are worth it.

On writing about my kid

November 16, 2012

Whistler's mother, with a laptop

image courtesy of Mike Licht, NotionsCapitol.com via flickr

Kids are great fodder for writers, as A. A. Milne and Anne Lamott, to name a just a couple, have demonstrated. And as long as adults have written about kids, I’m sure those kids have been flattered, or enraged, or a little of both.

On the internet, everyone can be a storyteller. With so much talk about protecting our kids from internet predators, little is said about biggest violators of our kids’ privacy: us. Parents. Parents whose Facebook profile pictures proclaim “I AM my child.” Parents who document every milestone and every setback online. Parents who won’t have to drag out the photo album to embarrass their son in front of his date, because she will have seen all his bathtub baby shots on Instagram before she even agreed to go out with him.

Most writers who expose their kids as part of their craft think about this carefully. And so have I. I try to keep the focus of this blog on my experience, not Chloe’s, and I use only the details that I need to illustrate larger points. Most importantly, though, I ask myself, “if she reads this as an adult, would she be pissed?” Though it’s an impossible question to answer.

Having a kid with a disability puts a few more layers on this topic. Special needs parents experience parenthood differently, and we have different reasons for writing about our kids. And different pitfalls. I can’t speak for all special needs parents, but here are some of mine.

I have better stories.

I’m not saying I’m a better storyteller, and I’m not saying our lives are one meaningful experience after another, though there are plenty of those. I mean crazier, more dramatic, more terrifying stories. Most of which I have not put on this blog.

Medical emergencies, for example, can make important and meaningful stories. Isabel Allende’s tragic story about losing her daughter, Paula, helped me through the hard times of my own daughter’s hospitalization. And for many special needs parents, a harrowing trip to the ER is not a question of if, but when. Will our kids appreciate their most vulnerable moments being trotted out for the world to examine?

I’ve spent a long time feeling alone with my stories.

Discovering parents who were going through the same thing made a huge difference in my life, and I hope I can do that for other parents.

It’s hard to explain life with Chloe.

People don’t know what to ask, or if they should ask. And when I try to explain, I often don’t know where to start. Explain cerebral palsy until their eyes glaze over? Focus on Chloe’s strengths and end up sounding like every other annoying proud parent in the world? This blog is a shortcut, a visitor’s guide to our lives.

I run the risk of making my child into a perpetual patient.

When Chloe was about three years old, she began to get angry if we talked about her to other people. I’m sure this bothers all kids, but for disabled kids, it can really get out of hand. Besides going to the doctor (where she hears her disability discussed in detail), Chloe also has to listen to long discussions about her motor, cognitive, verbal, digestive, etc. skills at the orthopedist’s, neurologist’s, neurodevelopmental pediatrician’s and orthodist’s offices, as well as at countless therapy appointments. This must make her feel like a collection of symptoms and problems, rather than the whole, wonderful person that she is.

On top of that, she was sitting through long discussions about herself among her father and grandparents and me, until she finally got her point across and we got more discreet. And for many disabled kids, the endless discussion of their problems continues on the internet. So I try to make this blog about the many important parts of our lives that take place outside of the doctor and therapists’ offices.

It’s possible Chloe will never see this blog.

I’ve told her that I write about her, and asked if that’s okay with her. I’ve even read posts to her. But although I’m pretty sure Chloe can read, she can’t control a mouse or a keyboard, so she won’t be stumbling onto this blog anytime soon.

This is not an excuse to violate her privacy, of course, especially since technology and/or treatment for CP could solve this problem for her in the future. But there are disabled kids out there who aren’t capable of understanding or caring that their parents are strewing the details of their lives across  the internet. And there are kids who do understand and care about privacy, but lack the communication skills to express that. What about their privacy?

As indignant as I can be about the offspring-as-Facebook-photo phenomenon, I know that I can easily fall into the trap of confusing my identity with my child’s. I sometimes think that, as Chloe’s mother, I have direct access to her experience–that I can understand, through her, what’s it’s like to live with a disability, that her stories are mine, to use however I want. But Chloe is her own person, and her disability is hers alone. In this blog, and in all my conversations about Chloe, I have to keep reminding myself to draw the line. It’s important to tell our stories, but not at the expense of her privacy.

Discipline is different

November 3, 2012

a child looking up at his mother

image credit: mod as hell via Flickr

When you have a special needs child, discipline is different. It’s different from discipline for typical kids, but it’s also just different, every day, every moment.

For example, this evening, Chloe knocked her food all over my lap. She somehow has perfect aim when she’s trying to spill her food. Her tube feeding spilled across my white shirt, and the stain will probably never come out.

Of course I got mad. I snapped at her, told her to be careful, told her it was not okay to spill her food. Then I got up to change, and by the time I got back, I realized something–she was probably full. And she can’t make the food stop; it just keeps flowing until I stop it for her. Usually she can tell me she is full with her ipad. But not this evening, because we were using it to watch Netflix.

So I asked and, indeed, she is full, and I’ve taken away her only means of communicating. And now I’m punishing her for finding a way to get the point across. So I apologize and revise the rule: No spilling food unless that’s really the only way you can let me know what you need. And Chloe agreed. She’s very patient with me.

Oldies but Goodies

November 21, 2011

This week, I thought I’d dig to the bottom of my blog and bring some old posts up to breathe a little:

1. 5 things doctors won’t tell you about your special needs child

2. The wheelchair discount

3. Don’t welcome me to Holland, lady

4. The right thing to say

5. To walk or not to walk

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?

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