Why I don’t “like” pictures of your children

August 22, 2015

Dear social media friend,

That picture of you of Facebook, smiling and exhausted, holding your damp new offspring carefully swaddled in those blue and pink hospital blankets. I’m not going to like it.

Nothing personal, it’s just that those photos bring back some bad memories, memories of my daughter’s first year, the hardest year of my life. Just the sight of those striped blankets makes me go cold inside.

Of course, every new baby comes with challenges, but you and you baby will probably (hopefully) not endure EEGs, speech therapists, feeding tubes, daily injections and two long stays at Children’s Hospital. All while watching every milestone, every special event you are supposed to look forward to and celebrate, pass by without the slightest effect on your child.

Except one. Her first smile, right on schedule. I enjoyed those smiles for a few weeks, but then came steroid injections for seizures and the side effects were so awful that she stopped smiling for three months.

So I won’t be liking that first picture, or any of the ones that follow–the cute questions and sassy retorts that my daughter can think but can’t say. The soccer pictures, dance recitals, the evidence of budding musical talent. Or those first day of school pictures in which your kid stands on her own two feet, carries her own backpack.

If your child go to school with my daughter, she might be one of those rare gems who can actually figure out a way to relate to her. More likely, you child might say hello to her in the hallway, but will mostly ignore her. And I won’t expect you to call me up with a playdate suggestion or a birthday party invitation, because that is also a rare occurrence.

So yeah, I’m jealous and bitter. But also, I have to admit I feel a little superior, too. See, we got through that year, and we’ve been through other hard times, too. And we have our joys and our triumphs. But they aren’t the typical joys of family life. Ours feel hard-won, miraculous. Like turning to catch a stunning view in the middle of a climb to the top of Mt. Everest.

Like anyone who faces a difficult task, I can be very focused, very self-centered. I don’t resent your happy kid pictures; I just won’t be liking them, or leaving enthusiastic comments or smiley faced emoticons. Because they seem to have so little to do with me.

I know that Facebook presents a limited view of your life. That you face struggles, too–challenges and griefs that I may never understand. But that just increases the distance I feel from your experience. From way up here, you and your family appear to be frolicking in the basecamp, while my daughter and I cling to a ledge, trembling and exhilarated, wondering if the next step will take us a little closer to our goals, or send us plummeting down.


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.”


Misin-form-ation

June 9, 2013

Image of a paper form
When you have a special needs child, you fill out a lot of forms, and they never fail to be tedious and invasive. The other day, I filled out an 8-page form so that my daughter’s school could bring in an outside agency to do an adaptive technology assesment. As I answered question after question on page after page, I thought of a few questions I’d like to ask whoever created this form:
  • It’s 2013–why am I filling out a paper form with a pen? At the very least, could you make it an editable PDF? I’m supposed to rely on you to find appropriate technology for my daughter when you don’t even understand the appropriate technology for filling out a form?
  • Do you really need to know how long my labor was? It’s been nine years–even I don’t remember that.
  • And why all the questions about Chloe’s birth? Do you think that after countless doctor and therapist visits, YOU are going to be the one gleam some kind of brilliant new diagnosis from the basic details of my daughter’s birth? Well, you won’t be.
  • I estimate that Chloe has had about 20 different therapists over the years, and you’ve given me six lines to list all their names and mailing addresses?
  • Do I even remember their names, let along their contact information? No, for the most part I remember them as “the chick whose underwear was always sticking out of her pants” and “that red headed woman who just stopped showing up one day” and “that one really good speech therapist who moved to Atlanta for some guy.”
  • Why do you ask for everyone’s address? Are you going to mail them a letter? Wouldn’t you rather have their phone number, email address, website, twitter handle, or even fax number? Have you updated this thing since 1970?
  • Do you realize how disheartening it is to look through yet another list of developmental milestones and find nothing I can check off?
  • You want a list of Chloe’s favorite toys, TV shows, pets? I assume you’re trying to figure out the best way to engage my child, which makes sense. But my child, like every child, is a unique character who cannot be summed up with “dolls, Good Luck Charlie and a cat named Woody.” Why not ask me to bring along some of her toys, and find out in person how to get her attention? In fact, if we could just meet for five minutes, I could just tell you everything you need to know and save us both a lot of time and trouble, not to mention a wicked cramp in my hand.

Alternative alternative communication

March 15, 2013

20130315-101010.jpg

Chloe is sick today. She’s lying on her mat, and I’ve been trying to overcome the temptation to let her watch TV all day for the second day in a row. But now she’s whining.

“Do you want to watch TV?” I ask. But she’s all the way across the room. We can’t use our usual system, where she grabs my left hand for yes, my right hand for no.

“Smile if you want to watch TV.” Chloe doesn’t smile, she makes an impatient noise and squirms. She knows I know she wants the damn TV on. But I want her to “say” it.

“Okay, move around and make an expression of desperation if you want me to turn on the TV.”

And this time, I get a smile. I turn on the TV.


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.


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