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Aug 24, 2009

Health Care Reform & What It Means To Me, Part 1

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Meet Cordelia, my single most important reason for health care reform:


Many of you know her, either from in-person meetings or from this blog. She’s four years old — nearly five — blond, blue-eyed, very tall, and exceptionally healthy. She rarely gets sick, and when she does it is minor and doesn’t require a trip to the doctor. (Or massive, when she breaks her tooth in half.) She usually only sees the doctor once a year for her annual check-up.

But she also is on the autism spectrum. PDD-NOS to be precise. As a result of this, she has endured an uphill battle against herself. Two years ago, she was a different child. She spent her days lost inside herself, studying the curve of a toy car wheel, counting and lining up blocks over and over for an hour, and rarely making eye contact with those around her. Her speech was scripted, and while she talked a lot, it was often quoting entire episodes of Dora the Explorer. She’d run laps in the living room each evening, flapping her arms absentmindedly, oblivious to anything going on around her as she ran, jumped, and flapped.

Remember this video? You couldn’t break her pattern. And re-reading that post, the signs were there, even at 17 months old. A longer version of the video shows how determined she was in her counting as she lined up her toys.

When she did answer questions, it had to be factual answers that she could draw from scripts. Never could she answer the question, “How are you feeling?” because the truth was, she didn’t know. She had little to no sense of imaginative play. When we put her in a summer camp, she looked right through other children as if they weren’t even on the same plane of existence as her. Kids would say hi, and she completely ignored them. Adults fared only slightly better.

Worst of all, the slightest change to her equilibrium sent her into violent meltdowns, often made up of primal shrieking, writhing on the floor, repeating a phrase over and over, banging her head into something until she bled, unusual demonstrations of strength, and no recognition of anything around her at that time. Her eyes looked glassy, as if all higher functioning in her brain was shut off, and trying to soothe her or calm her down usually made it worse. This would go on for 15-40 minutes at a time. The worst of these meltdowns terrified me, as I always worried that she might never come out of it.

What set off these meltdowns? Switching activities. Touching something gooey. Different bedsheets. Putting her bare feet in the grass. A child singing. Leaving the house. The wind changing directions. A Buddhist monk in Tibet dropping his chopstick on a pillow. Nearly anything would trigger it, and we’d all suffer from these meltdowns on a regular, daily basis. Sometimes more than once a day. Sometimes more than once an hour.

Oh, we had several lucid moments. Moments when I’d look at Cordy and say There she is! There is my daughter! To the casual observer, she seemed like a bratty two year old that had been allowed to have her way too much. She could fool someone who only spent five minutes with her — she’d either ignore them for some toy, or give nonsense answers to their questions that would make them think she was trying to be silly. But more often than not, my Cordy was hidden inside herself, trapped so deep that I couldn’t reach her. I’d see that vacant stare and look deep into her eyes, desperately wishing for an ability to reach into her brain and show her that the world outside it was far more interesting.

With all of that backstory, allow me to describe Cordy today. She’s happy. She likes going to school, although the idea of a new school this year is causing severe anxiety at the moment. Her speech, while still scripted at times, is clear and she can often answer your questions with a relevant answer. She’s learning imaginative play, too — recently she’s been obsessed with pretending to be a doctor.

Just this past week she started sharing her emotions regularly, telling us when she’s angry or sad. You’ve never seen a mom so happy to hear her daughter huff, “I’m feeling angry!” because it beats the alternative we’re all used to.

She still has that vacant stare at times, and her eye contact isn’t the best it could be. Her need for routine is just as strong as before, and we’ve also learned to cater to her needs to help her feel more comfortable. She still “stims” by running or jumping or flapping, but now she can tell me, “I’m feeling a little flappy today,” to help us understand her actions. We can go out to restaurants with little fear of making a scene now, unlike years past. Sure, she’ll occasionally get overstimulated and disappear under the table for a bit, but that’s better than drawing the attention of an entire restaurant full of Asians trying to enjoy their Sunday dim sum.

Here’s a good day, playing with her puzzle:

Cordy’s puzzle from Christina M on Vimeo.

And here’s an example of what she has to fight against all the time:

Flapping from Christina M on Vimeo.

Her meltdowns? The massive ones are no more than once every 2-3 weeks now, although we still endure minor meltdowns every 2-3 days, where she’ll slap herself in the head, or withdraw into a closet or under her trampoline while she cries and talks herself down by repeating conversations of TV characters or a simple phrase over and over.

The world is still very confusing and frightening to her, and while we’re seeing more and more of our daughter, it remains a battle we must fight every single day. She has a long, long way to go. While she was eligible for kindergarten this year, we chose to enroll her in special needs Pre-K instead, giving her one more year to show some progress before attempting to put her in a mainstream classroom. She’s not ready yet, and I’m already worried if she’ll be ready in time for next year.

But no one can doubt that Cordy has made amazing progress. So much of the credit for this transformation can be given to her special needs preschool teacher and the team of therapists in her classroom: occupational therapists, physical therapists and speech therapists.

The one entity I can guarantee you gets absolutely NO CREDIT at all for her progress? Health insurance.

Because back when we were first told that Cordy was developmentally delayed, most likely autistic, and needed aggressive intervention right away, I sought out help in the most sensible place: the medical system. Cordy’s pediatrician was very understanding and gave me a long list of therapists in the area for PT, OT and speech, as well as psychologists who offered additional testing, behavioral therapy and social skills classes. I left that meeting feeling ready to get started in helping my daughter find her way back to us.

And then I ran into the big health insurance roadblock.

I e-mailed our health insurance — one of the “best” in the state of Ohio — explaining our situation and double-checking how much coverage we would have for all of this therapy.

Their answer sent chills down my spine and made me physically sick: they provided no coverage for autism-related claims, insisting that autism was an “incurable and untreatable” condition. Zero coverage, end-of-story.

Let me put this another way: if your child has a speech delay, they will cover speech therapy for that child. If your child needs speech therapy because of autism, you can expect to pay every penny out of pocket, because they won’t cover it.

Not only were we stopped from pursuing any treatment (because it’s tremendously expensive and we didn’t have an extra $25,000-50,000 a year to spare), but in being honest with our health insurance, Cordy now had a big target on her head. Anything that could in any way be related to autism, even if it was the result of a different medical problem, will be denied by our insurance in the future.

I’m thankful that Cordy broke her tooth during a time when we were unemployed and the girls were covered by Medicaid. There was no way Cordy could have endured sitting in a chair for a root canal and repair of her tooth — she needed general anesthesia.

Had we still had our old insurance at that time, they would have denied coverage of the anesthesia, saying it was related to her autism and not part of the regular course of treatment, leaving us with thousands of dollars to pay. (Or we could not get the surgery at all, putting Cordy through pain and possible infection, which can lead to systemic infection and death. Which of course isn’t an option, leaving us to risk bankruptcy or losing our house for the health of our daughter. Nice “choice,” right?)

Medicaid took care of the entire procedure. No bills to us, no questions about why she needed general anesthesia. Medicaid is the one health insurance in Ohio right now that cannot deny a child’s treatment related to autism. (Before you get upset, know that I’m in no way saying Medicaid is perfect. That’s a discussion for part 2.)

We now have insurance again, thanks to my job. So we’re all fully-insured, paying $260 a month for the privilege to pay only 20% of the bill for health care. But Cordy is once again without any coverage related to autism.

Cordy’s autism therapies so far have come directly from the school district. (Thank you, taxpayers – you’re already paying for her therapy, only in a somewhat inefficient, roundabout way.) She receives one hour of group OT, PT, and speech each week in her class, during the school year only.

The medical diagnosis she recently received calls for way more therapy than that to give her a chance at the best outcome, but we can’t afford it. She needs several hours a week of therapy, along with social skills therapy and ABA, two services not offered by the school system. She could achieve better results with more therapy, but unless we get insurance coverage for it, or we win the lottery, it ain’t happening.

It infuriates me that health insurance companies are allowed to declare autism an “incurable and untreatable” condition and exclude any coverage for it. My daughter, who never gets sick and is otherwise a “good bet” for these companies, is uninsurable in the one area where she actually needs treatment.

Had we not sought out alternative treatments for her via the school system and our county’s MRDD funding, it’s quite possible Cordy would still be acting out daily, her sweet personality lost to the world and to herself, all because an insurance company declared her to be useless to society. You want health care rationing? It’s going on right here and now. Instead of paying the money upfront for therapy to help her, they would rather pay the money to later institutionalize her. (Which I’m sure works out to a much larger bill.)

It’s true – institutionalization or group homes are often covered by insurance for adults with autism who can’t live on their own, while basic ABA, OT, PT and speech therapies are denied for children who could avoid those places if they only had the early intervention to help them. What kind of a backward system is that?

Several states have already made it illegal to discriminate against autism for health insurance (not Ohio yet), but it shouldn’t stop there. This needs to be addressed at a national level, and not just autism, but other pre-existing conditions, too.

What will Cordy’s future be like? I don’t know. We know from several experts that she’s incredibly smart, although she often can’t organize her thoughts well enough to demonstrate the full extent of her intelligence. It’s possible she’ll do well in school, but it’s also just as likely she’ll struggle. It’s also possible that had we been wealthier and paid for additional therapies for her, she could excel far beyond our expectations. Have we failed her simply because we don’t have enough money to get her what she needs? Maybe, but I feel our health insurance has failed us instead.

My personal belief is that health insurance should not be a for-profit entity. (Backpacking Dad’s explanation of the current system is fabulous.) Does my daughter deserve to have lower odds at success and happiness in life because we don’t have the right insurance or live in the right state to protect her?

Yes, you might say I sound a little socialist. You expect the government to take care of you! I’m sure someone will say. Well, sort of. I expect the government to protect my most basic rights, and I believe equal access to health care is one of those rights. (Just like we all enjoy equal access to military protection, a safe food supply, equal access to the judicial system and several other protections the government provides.) In exchange, I work and pay my taxes for those services, and I’m happy that my taxes go to help those who have lost their jobs and need assistance. After all, we were those people just a few months ago. It’s not my place to judge who is truly deserving of assistance and who is not.

As with so many of my posts, I’ve rambled all over the place, but this is an issue that is too large for one post. Or a week’s worth of posts, honestly. I’m barely touching on the issues here, and instead choosing to show you one story of the injustice of the current health insurance system. Because this little girl?

(pretending to be Dr. Cordy, ready to fix any boo-boo)

She’s my reason to fight for reform. Knowing that other families are going through the same or worse than us is enough to make me stand up and say THIS IS NOT WORKING, PEOPLE!

So if you can look at that photo up there, and read all of the stories about Cordy I’ve written on this blog, and then tell me (and tell her) that she’s not deserving of the therapy her doctors recommend, therapy that could help her become a woman who could go on to do any of a number of things — maybe find new treatments for autism, or cancer, or find a way to feed the world, or maybe be nothing more than a loving mom who does a damn fine job as president of her school district’s PTA — if you can tell us that she doesn’t deserve the chance to be her best, because she wasn’t born in the right family, with the right resources, and because she had the nerve to be born with an autism spectrum disorder instead of a different neurological condition that might be insurable under current rules, then do me a favor: click that little red X in the top of this browser window and if you’re subscribed, go ahead and unsubscribe from my blog.

Because if you truly believe she doesn’t deserve the treatment her doctors say she needs, then I am left to assume that you really don’t care about her or my family at all, and I don’t know why you bother reading this blog.

And while we could (and likely will) debate the minutiae inside the current health reform bill until three presidents from now, I see it as better than our current situation. A good start. I don’t have the luxury of waiting for the perfect bill to be crafted, because it never will. I need change, for my daughter and our family, NOW.

I’ll never stop fighting to give Cordelia everything she needs to succeed, but it would be nice to not have to fight so hard for once. It would be nice for someone in a position of power to say “Your daughter deserves the best chance, not because you have the right influence, not because it’s politically popular, but because it’s the right thing to do.”

No parent should have to lay awake at night, wondering if there was some valuable possession she could sell, some additional work she could do, to make the additional money needed to give her child the health care she needs. No parent should have to feel the heavy guilt of knowing more is needed for her child’s health and yet she’s powerless to provide it.

This system isn’t working. We need reform.

Filed Under: Autism, big issues, Cordy, rant ·


Aug 12, 2009

The Diagnosis: Letting It Sink In

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You might remember back in May, when I took Cordy for a medical evaluation to determine if she really had an autism spectrum disorder, or if the educational evaluation she had at three years old was simply a bad, bad, bad day.

I was supposed to receive the results in a month. It took two and a half months, due to a slight processing error in payment from the Franklin Co. MRDD board. (Yes, they paid for it, and they recommended it. Thank you, citizens of Franklin County – it was a far better use of your tax dollars than some of the projects out there.)

Eventually I stopped wondering when the results would arrive. Maybe Cordy did such a good job at her evaluation that they saw no point in wasting a stamp? Maybe they laughed so hard at my worries that something wasn’t right with my child that they forgot to send the results?

Then, just a couple of days before I left for BlogHer, a thick envelope appeared in our mailbox. And while I read it that day, I’m mentally and emotionally still processing what that envelope contained, even now. It’s hard to see your child broken down into a series of behaviors and scores. It’s hard to read the words of how your child is different from others, not sure of what challenges will you both face in the future.

I’ll share one part of the summary for all of you. These are the words that occasionally float through my head, leaving me wondering what our next steps will be:

Cordelia is a nearly 5-year-old girl classified at school as having PDD-NOS. She has a history of social deficits, adaptive behavior delays, and sensory regulation difficulties. Her cognitive scores indicate average cognitive ability. Her autism screening scores indicate that Cordelia does display many characteristics consistent with an Autism Spectrum Disorder, such as PDD-NOS. Cordelia’s scores consistently show difficulties with sensory issues, social pragmatic difficulties, resistance to change, emotional and arousal regulation difficulties, and social approach difficulties.

She, however, also displays very strong cognitive skills and expressive language skills. Many of her scores on the ADOS and PDDBI (screening tests) indicate difficulties that are indicative of a pervasive developmental delay but not specifically indicative of (classic) autism. Thus, at this time, it seems a diagnosis of PDD-NOS is most appropriate.

They want to further evaluate Cordy when she’s a little older, thinking that she may eventually fit into the Aspergers label, and possibly ADD, too. Lots of new therapy ideas were thrown around, too. Expensive therapies. Therapies not at all covered by my new health insurance, who tells me that autism is an “incurable, non-treatable condition”. But that’s a rant for another day…

A few of the special needs bloggers got to hear more about this while at BlogHer. I needed to tell someone outside of family – someone who would understand that anything I said at that time wasn’t necessarily what I really meant, but was instead a reaction I was still working my way through – and they were the ones who were most likely to understand.

So at the point I can’t fully express what’s in my heart. I don’t even know what’s fully in my heart. But last week I attended the kick-off for the Columbus Walk Now for Autism event, listening to other families bravely speak to a room full of people about the challenges they’ve faced and also the joys they’ve experienced. I cried. A lot. And I’m already signed up to walk again this year. I want my team to raise $1000 this year, doubling what we raised last year.

This much I do know: Cordy is on the autism spectrum, and once I organize my thoughts, the mama bear in me will be fired up again to fight for anything my little girl needs.

(And thank you, thank you to all of you who have provided me with so much support as we’ve gone down this road with Cordy. Your comments, your e-mails, your words of love have carried me through to this point, and I don’t know what I would have done without this community. You’re all lovely.)

Filed Under: Autism, big issues, Cordy ·


Jul 8, 2009

Not Your Typical Milestone

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Thanks to the broken tooth, Cordy had to break her string of only visiting the doctor once a year in order to get a pre-surgery physical. I’ll admit that I was nervous, expecting a meltdown or at least a lot of non-compliance from my doctor-phobic daughter. She’s never liked going to the doctor, and has never let them do a full exam without a lot of screaming and being held down. We still don’t know her blood pressure, as a cuff has never made it around her arm yet.

But yesterday was a new milestone. She was mostly agreeable. When the nurse asked her to step on the scale, she did it without argument – a task she refused to do at the hospital over a week ago. I’d like to think that part of it was my different approach this time: instead of asking her to see how big she was (which she always replies “I’m four and a half big!”), I instead told her to step on the scale so we could make number appear. Ah-ha! Appeal to her love of numbers! Why didn’t I think of that before?

After the scale was out of the way, and my eyes came back into my head after seeing she weighs 50 lbs. (before you think it, she’s not fat. 50 lbs is reasonable for a 4 year old who is getting very close to 4 ft. tall), we then went into an exam room. The nurse wanted to get Cordy’s pulse, but Cordy did not like this woman touching her wrist and holding it for a long period of time. We tried asking Cordy to count to 15, count the fish painted on the wall, etc., but we never got past 8 seconds. The nurse gave up at that point.

When Cordy and I were alone in the room, she scanned the room quickly and found a magnetic drawing board. Suddenly she was happy as she drew pictures of grandma, complete with her trademark circled X, H, and an outline of her hand. We didn’t wait long before the doctor came in.

This was our first time seeing this doctor, so I didn’t know what to expect. But she was soft spoken, young, and seemed to understand Cordy well. She asked me several questions first, not directly confronting Cordy so that Cordy could get used to her in the room. Then she started off with simple questions for Cordy, asking what she was drawing, how old she was, does she have a sister, etc.

When it came time for the exam, I was prepared for the worst. However, Cordy willingly let the doctor put her stethoscope on her chest and back, even taking deep breaths when asked. She opened her mouth and said “Ah” on command, and didn’t complain too much when the doctor looked in her ears. She even laid down when asked so the doctor could feel her belly. I sat there the entire time, grinning like a fool in amazement, and at the end told the doctor that this was the first time Cordy has ever let someone examine her willingly. She was pleased to hear that.

The verdict: Cordy is fit for surgery. Other than low muscle tone (which we already knew about, and seems to be common in kids with autism spectrum disorders), Cordy has no medical issues.

I was so thrilled with Cordy’s performance, I agreed to get ice cream afterward. The two of us enjoyed our ice cream together, until about half-way through when Cordy bit down into an M&M and got that worried look on her face. “Does your tooth hurt?” I asked her.

“No, it’s OK!” she tried to reassure me, but the worried look remained.

“Your tooth hurts, doesn’t it? It’s OK, you can be honest.”

She shook her head yes for a moment, then shook it no. “No, my tooth is OK. It doesn’t hurt. But can you pick out the M&Ms from my ice cream, mommy?”

So her tooth still hurts. Next week is her surgery.

Filed Under: Autism, Cordy, growing up, kid logic ·


Jun 30, 2009

A Lot of Nothing, With a Side of Frustration

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I spent all of last night trying to psych myself up for today, prepared for Cordy to endure dental torture and probably some kind of sedating agent to allow tooth professionals to perform said dental torture.

No one told me the torture would be all mine today.

We arrived at the dental clinic at Children’s Hospital at 12:15pm. The emergency clinic opened at 1:00, so we took a number (#3 at 45 min. early!) and waited. Cordy was a little unsure of the waiting room, made worse minute by minute as more and more people filled the tiny room, eventually taking up every seat. It became loud and chaotic quickly. I silently hoped that, as #3 in line, we’d quickly be whisked away from the din of that waiting room.

The clock struck one and the registration window opened. #3 was called five minutes later and I approached the window, only to be turned away with a clipboard full of paperwork and instructions to return when I had filled it all out. Meanwhile, other numbers were called and other children were shuffled back into the office. I used my best speed penmanship to complete the forms and rush back to the window. I was again told to have a seat and they would let me know when they needed me again.

45 minutes later, we still waited. The room was still loud, Cordy was begging to go home and complaining of hunger. My head was pounding. When our name was called again, we went to the window only to be given an ID sticker to put on Cordy’s shirt, with the message to sit down and wait more.

Half an hour later, it was time to see the doctor.

We were brought back into a tiny room, where I explained what I knew: Cordy’s lower right back molar was broken, she may be in pain but we can never be sure, and she’s a difficult patient. The doctor coaxed Cordy into showing her the tooth (thanks to my offer to let Cordy cook tonight if she cooperated). The doctor then immediately launched into a lecture on cavities that made me feel about two inches tall. She seemed to assume I fed Cordy a steady diet of Mountain Dew and pixie sticks.

“Wait,” I interrupted, “How does she have a cavity? She doesn’t eat a lot of sweets, we brush her teeth, and I check her teeth weekly. I’ve never noticed even a darkish spot on that tooth. And she never eats hard candy or anything harder than a Goldfish cracker.”

The doctor paused, then told me how fluoride toothpaste can mask a cavity, effectively covering it up with a fluoride shell. I’ll admit, that made no sense to me at all. But then as she continued on, I again felt like she was somehow saying this was all my fault.

She then confirmed what I suspected: Cordy would need general anesthesia to repair the tooth. The better news? As long as it isn’t infected, they will be able to cap the tooth and not need to pull it. Then she told me, “The wait time for dental surgery right now is about 8-10 weeks.”

I stared at her hard for a moment, not sure if I heard her correctly. “You mean for routine stuff, right?”

“No, I mean for any dental surgery.”

As you know, I am nearly-a-nurse. I understand that a parent’s sense of urgency isn’t always the same as a medical sense of urgency. In that moment, however? I was ready to call the doctor a quack.

“8-10 weeks? But what if she’s in pain? We’re supposed to let her be in pain for 8-10 weeks?” I then explained Cordy’s odd pain reception, and how we don’t know if she’s hurting or not. She now won’t let me brush the tooth, so I can only assume she’s hurting. “There’s no way I can let her hurt for 8-10 weeks.”

The doctor nodded. “Well, since she is special needs, and has unique sensory issues, we can then consider that she is in pain and find an earlier surgery date. I believe there might be some spots available in 2-3 weeks.”

Again, a look of stupor had to show on my face. “2-3 weeks is considered acceptable for a child in pain?”

The doctor then tried to explain to me that there was acute pain and chronic pain, and how this is likely chronic pain, which a child can “get used to.” Ah. Well, that explains everything. She can just get used to hurting. No prob.

The entire procedure was explained to me, and I agreed that it sounded like the best possible procedure. General anesthesia gives them a chance to check for any other problems, correct them if needed, and give her teeth a good cleaning while she’s there.

So now we’re waiting to get a surgery date sometime in the next 2-3 weeks. And Cordy has to get a physical, also, to rule out anything that could prevent her from having surgery. (Including “malignant hyperthermia” according to the doctor, which I know can’t be determined from a simple physical.)

I am completely on-board with the procedure. It’s what Cordy needs. I also know that not everyone can walk-in and have dental surgery, despite what the ER led me to believe. I’m frustrated by the long wait, however. If Cordy’s tooth doesn’t become infected, we can save it. But if it does, the tooth will be pulled, which could throw off the spacing in her mouth. As someone who had braces for 5 years, I’d rather not screw up the good spacing she currently has. And the longer it takes to get this done, the greater the chance of infection, not to mention being in pain for longer than I would like.

The entire time the doctor and I talked, Cordy was miserable, sitting near the door, pulling on the doorknob begging to go home. She was scared by the medical equipment in the room, and the doctor often got right in her face, which is good for many kids, but completely intimidates Cordy. I hate that I had to put her through that today, and will have to put her through it again, along with a trip to her pediatrician, too.

We left Children’s Hospital exhausted: Cordy still with a broken tooth, and me with a killer headache and a lot of frustration. Cordy winced tonight when I brushed her teeth, denying that it hurt but showing signs that it did. The prescription painkiller (hydrocodone) did nothing to make it better, and in typical Cordy response, actually made her more alert and awake instead of drowsy.

This is one of those times when I can’t make everything better for her, and it really upsets me. I feel helpless, stuck in the system. I’m not asking for any kind of special treatment, either. In some ways, the special treatment we need is causing this to take longer – if Cordy could sit still and be a compliant patient, everything would have been fixed today in the dentist’s chair.

But as her mom, with all nearly-a-nurse knowledge put aside, I think it’s unfair to make her endure more pain because a condition she can’t control keeps her from being a model patient. I want to rage about how insane this all is to someone who can do something, but it wouldn’t help. It’s not rational, but isn’t that part of what being a parent is all about? We want to protect our children against anything, against all enemies, even if those enemies are reason and logic. Mama bear instinct is strong.

So now, we wait. And I make every effort to relax, while watching Cordy closely for signs of infection and hoping she isn’t hurting.

I hate this.

Filed Under: Autism, Cordy · Tagged:


Jun 28, 2009

Tooth Drama on a Saturday Night

By ·

I had planned on a quiet Saturday evening. Aaron was going to be at Origins, I was going to put the girls to bed and watch some great medical reality TV on Discovery Health. And then near bedtime, Cordy and I were playing, and I asked her to let me count her teeth. When I got to the last one, I noticed something didn’t look right.

Hoping it was just a little bit of dinner stuck to her tooth, I gently brushed her teeth, and noticed the molar still looked weird. Grabbing my pen light, I asked her to open her mouth again, and I got a close look (warning, graphic description): a jagged V slice was missing from the middle of her tooth, with the yellow pulp visible.

I couldn’t believe what I was seeing. “Does your tooth hurt?” I asked Cordy.

“No!” she replied with a smile. No way, that’s impossible, I thought. That HAS TO HURT. She had no idea when she did it, or how. I have no idea when she ever ate anything hard enough to crack her molar.

Part of Cordy’s unique character is her reaction to pain. Or maybe that should read lack of reaction. I’ve watched her do things that would make the average child shriek in pain. I saw her tear half of her fingernail off, and the most reaction we got from that was a temporary sad face. She doesn’t process pain the same way most of us do.

I still can’t figure out if she is feeling the sensation of pain and interprets it differently in her brain, or if pain doesn’t register at all. But either way, extreme pain generally doesn’t bother her. (Now, try to pour water on her hair and she screams that it hurts. I don’t fully understand it.)

I called her pediatrician’s on-call service, and the doctor said it was best to take Cordy to Children’s Hospital for a look. Infection was a concern, as was the pain issue. So after spending 20 minutes trying to prep Cordy for what to expect, we left for the hospital.

Cordy was scared. I knew this was likely to end in disaster, but at the same time she seemed to understand what I told her. The doctor wanted to look at her tooth, and they wouldn’t do anything to hurt her. She asked if she would get a new tooth, and I told her they would try to make her tooth all better. She promised she’d be brave if I promised not to leave her.

At the hospital, she was fine as I checked in, and I had hope that she might do better than I expected. Then we walked back into the triage area, and the aide asked her to stand on the scale for her weight. She lost it right there, and her fear slowly built into a full, old-school meltdown. No one could touch her.

I sat on the floor with her in our nook in triage, holding her while she tried to break free to run away, primal screams and repetitions of “Let me go!” coming from deep inside. My own face burned with embarrassment at the stares we got from other parents and staff. I know I should be used to this by now, but it still gets to me. I wanted to scream out, “She has autism! Transitions and new experiences are hard for her!” but instead I focused on calming her down. She finally calmed down right before we were moved to an exam room.

Hiding under the table as she came out of the meltdown

The resident who came in to examine Cordy was young and I had to explain all of Cordy’s quirks to her. Cordy hid under a chair in the exam room, unwilling to show her tooth or let this new stranger near her. She got a history on Cordy, then said she needed to talk to her attending doc to see what steps we’d take next. I was left alone in the room with Cordy. She eventually came up onto the bed with me, and then exhaustion from her meltdown caught up with her. Cordy was overcome with sleep.


When the attending doctor came in, he got to look closely at the tooth, thanks to Cordy’s ability to sleep like the dead. He was amazed that she wasn’t in extreme pain, as it is a very deep break in the tooth. Nothing would be done tonight, he said, but she will need to have something done with that tooth.

Based on her behavior, it was obvious that she will need to be sedated to have her tooth fixed. That’s something they didn’t have the set-up for in the ER, but the dental clinic at Children’s has the ability to do general anesthesia. So the plan was put in place for her to come see the dental surgeon on Monday to determine what to do with that tooth.

Cordy also received a prescription for a heavy-duty pain med that would make drug seekers green with envy. Even though we can’t be sure if she’s hurting or not, the doctor said the only ethical thing to do in this case is assume she is in pain, treat with ibuprofen round-the-clock, and then use the prescription pain med if she shows any signs of pain or says that her tooth hurts.

Even though I’m nearly-a-nurse and know that general anesthesia is safe, I’m still terribly nervous about Monday now. First, I know we’re going to have a replay of everything that happened tonight. But on top of that, they will have to hold her down and sedate her.

And even though she has no allergies that we know of, we’ve also never had to know her allergies. She’s only been on antibiotics twice in her life. She’s never been seriously injured or sick. However, I do know that she reacts strangely to nearly anything she’s given. Pain medications don’t seem to do anything at all, while she has adverse reactions to Benadryl. Hell, even blue food coloring affects her behavior. Nothing about her seems to react the way it should. I worry she’ll be ultra sensitive to the anesthesia or something will go wrong.

I hate seeing her afraid. And I hate having to even think about risking general anesthesia for a tooth problem. At this point I want Monday to come and go quickly and with as little disruption to our lives as normal. But I’ll confess I’m so worried that something might happen to my Amazon warrior princess.

I don’t want to be on this side of things – I want to be the nurse reassuring the parents that everything will be fine, not the worried mother hoping her sensitive child won’t have a bad reaction under anesthesia.

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