A Mommy Story

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?

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.