The Saga of Orthotics, and why it’s important to talk about it during an election year

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I hope you’ll bear with me today, because there’s a reason I’m about to tell this story.

blog wedding daddy dance

Random cute picture to break up the text, and to offer a glimpse, however blurry, of Julianna’s “old” orthotics, known as AFOs (ankle-foot orthotics)

One thing that sometimes accompanies an extra 21st chromosome is “pronation.” This means that due to low muscle tone, the feet turn out. Julianna has fabulous health and good cognitive functioning but her feet are regularly regarded as the worst the experts have ever seen. She’s been in orthotics—shoe inserts—pretty much since she learned to walk.

Up till now, her inserts have carried a price tag of $1400 per pair. For several years this caused no issues because we have great insurance (because my husband is a public employee). But a year ago, our insurance changed and the provider was no longer in network. So we switched providers and went on faith that we just needed to hold the course. Unfortunately, Julianna has spent the last year with blisters (and now callouses) on the inside of her foot, where her body was fighting the insert because it was no longer what she needed. Even more fun? The insurance denied the claim. After six months of Christian beating them up on the phone, the insurance and the provider got their signals straight, but the upshot was nobody paid for the braces—insurance forced the provider to eat the cost.

This year, we went in wiser. We switched back to the provider we had worked with successfully; we called in the doctor for a meticulously-worded prescription; we talked to the local (taxpayer-funded) organization that funds services for people with special needs; and we made sure they were both in contact with insurance. It turns out Julianna needs a far more restrictive brace—one that goes all the way to her knee. Here’s the cost estimate:

orthotics crop

This is the pre-auth form; for now, as you see, the insurance provider seems amenable, but after last year we’re not counting our chickens.

I began this process in mid-June, and yesterday after a 1-hour consult, about a dozen phone calls and two more appointments, finally we brought home Julianna’s new braces.

Which is where Part B comes in: Sensory Issues.

Another thing that frequently goes along with special needs in general is sensory issues. Some kids cannot wear clothes with tags. Some kids need particular fabrics. Some kids cannot deal with being touched; others freak out with loud noises. I have long said Julianna’s only sensory issue is oral defensiveness, but I’m realizing I was wrong: any touch that smacks of medical practice makes her lose her ever-loving mind.

Step one: Casting.

They covered her leg with a sock and then wrapped the leg with the foot held in position, using a fast-setting moist, Ace-type bandage. I intended to document the whole process, but this was the best I got:

AFO 1

…because within 10 seconds of taking this shot, both Christian and I were on duty, me holding her body as still as I could and Christian holding her leg in the proper position so the orthotist could do the casting.

AFO 2

The finished casts

The rubber tube goes over the sock to help space so they can cut the cast off after it’s set. Total time at the orthotist’s office: 1 hour 15 minutes.

We came back 10 days later to pick up the braces. But it’s not that simple. See, there’s also padding inside the brace, and that has to be done when you come to pick them up. The brace does the major corrections, the pads do the minor ones. And when we got there last week, the lead orthotist decided the braces weren’t tall enough. They needed to be remade. Total time: 1 hour 15 minutes, with nothing to show for it.

We came back for a third time yesterday, at the end of the first day of school, to find an emergency procedure had set them behind by several hours. So we arrived at 3:40 p.m. and left at 6. And there was much wailing and shrieking and flailing of locked-up muscles, along with the word “No.” Otherwise she lost all verbal capacity. And this is what we came home with:

AFO 3

Notice: knee-length socks, which caused extreme sensory anxiety, and hard plastic outer shell (ditto), soft plastic inner shell, and special shoes.

And we have to go back on Friday to make sure they’re not rubbing her skin wrong…and possibly again in two weeks for followup.

Let me emphasize a few points:

1. This is a process we will go through every single year for the foreseeable future.

2. We will never have a guarantee that these suckers are going to be covered by insurance.

3. We have to do this, because the alternative is that her legs grow crooked and destroy her knees.

4. This is only one example in the array of issues dealt with by families who have loved ones with special needs.

I tell this epic-long story, breaking all my rules about keeping posts short, because I want people to understand that many of the life philosophies we cling to, philosophies that make a great deal of sense IN THEORY, really only hold up under circumstances where everything—or at least most things—go “right.” Small government and self-reliance are praiseworthy goals, but they must be pursued in tandem with a view of the world that is “pastoral,” to borrow a word from Church circles.

In other words, rules and guidelines are good, but people are more important.

My family is really blessed to have amazing insurance as well as advanced degrees and jobs that allow us to spend the time and mental gymnastics to successfully navigate the shoals of coverage/not coverage.

An awful lot of people don’t have those benefits.

An ex-legislator once told me insurance is for extraordinary things, not ordinary things, and that for special needs, things like therapies are ordinary. (And, presumably, $4000 orthotics.)

If I have made any point today, I hope it is that special needs are, by definition, extraordinary. Some problems cannot be solved by the private sector; some problems are too big to be borne by individuals without help. It’s not enough to say, “These kids have a right to be born.” If we’re going to support the right to life of children, we also have to support their right to a healthy existence once they’re born. It’s wrong to tell parents they HAVE to have these kids, and then withhold the support needed to raise them. (In another context we’d call that an “unfunded mandate”.)

I post this because I hope it will provide a needed perspective in this election season. This is one of many quiet, nuanced issues that receives zero attention in an atmosphere charged with shrieking about things that, when it comes right down to it, really don’t have much impact on people’s lives. I hope, at a minimum, our story gives people a perspective they never considered before.

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We Need a Thoughtful Discussion About Birth Control (A No Easy Answers Post)

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No Easy AnswersThere is a reason I generally don’t post about headlines: it takes me time to process things and make sure my first reactions all hold water. I hate the tendency to react without thinking, the way it leads us to view everything in black and white and fail to acknowledge the nuances in every situation, and the fact that if you stop and reflect for a while before posting, the topic has passed and no one cares anymore. But usually I choose to sacrifice timeliness in the service of thoughtfulness.

All this as a preface to the fact that my sister, the lawyer, pointed out that my post on Zika and contraception included a rather major flaw that, in my attempt to react in a timely fashion, I somehow overlooked. Namely, the whole flap about Zika really is about preventing pregnancy, not just about preventing disease spread, so the whole argument about barriers vs. hormonal birth control doesn’t hold up.

I feel particularly embarrassed because the topic of sexuality and its relation to family planning is so important to me, and I get so frustrated when people of faith end up turning off those they’re trying to convince by reacting without thinking things all the way through. It’s called shooting ourselves in the foot.

I think I shot myself in the foot, and I spent half the weekend cringing about it.

However, I do not delete the post, because I still believe most of what I had to say is important to have out there. Every single article that touches on the Church’s teaching on contraception emphasizes that “Catholics aren’t paying attention to this teaching, anyway,” as if that proves anything other than that people do what they want to do and always have—screwing around on their wives, cheating their customers, spreading rumors, and a host of other things the Church has always taught are wrong. Yet there’s not one of those other cases in which anyone would even consider suggesting that noncompliance = an institution “out of touch” and a teaching in need of change.

Birth control is one of those topics that people on both sides—myself included, apparently—just don’t seem to be capable of thinking rationally on. We can all project some semblance of reason, but there are conversations we ought to be having but which are considered to be non-starters.

For instance: if Church teaching on contraception is so universally ignored, why do its opponents get so bent out of shape about it? Why do they feel this compulsion to bring it up at every possible opportunity? What possible threat could it pose to them?

And another one: Is birth control actually good medicine? Isn’t it possible that it’s actually bad medicine, disrespectful to the dignity of woman, to go in and shut down a part of her body that is working just fine?

And related, but distinct, because sometimes the body isn’t working just fine: Is it truly good medical practice to use pharmaceuticals to mask symptoms of problems like PMS, endometriosis, PCO, thyroid deficiency, etc.? Shouldn’t we default to “Let’s figure out what’s wrong and fix it,” and only go to “mask the symptoms” when all other efforts have failed?

These are questions that truly puzzle me, and on which I truly would like to see thoughtful, non-polemic discussion take place. Perhaps there are things I don’t see that would make a difference to my view on them.

Can we have that discussion? Are there any people out there willing to read through a post on birth control and get to the end of it willing to engage?

For other posts in the No Easy Answers series, click here.

Mountains, Molehills, Contraception, and The Zika Virus

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Image by KOREA.NET – Official page of the Republic of Korea, via Flickr

When I heard the radio headline yesterday afternoon, I groaned. Because I knew I was going to have to blog about the pope’s comments, and as a proponent of natural family planning, it would be hard to convince anyone that I’m approaching the topic objectively.

But there under the awning of the Gerbes fuel station, I took a deep breath, and I said to myself, “Okay. If Pope Francis does move us away from the teachings on contraception, I will be open to the Spirit, and I will be a better person for it.”

Of course, the headline was sensationalized; when I listened to the report, it became clear that a Mount Everest is being made out of, well, a hillock at most. So here are my thoughts, as someone who’s been studying and reflecting upon this extremely complex and far-reaching topic for sixteen years.

1. There’s always been a medical exception to the birth control teaching. So why don’t we hear about it? Well, this is just my opinion, but I think it’s because it can’t be sufficiently addressed in 140 characters, and since that’s about all most of us are willing to listen to these days, it’s better to stick to the “in general” rule of thumb and deal with the exceptions case by case. There are other reasons, of course. The medical exception is really easy to abuse, for one thing. For another, hormonal birth control is used far too often as a bandaid to cover up problems that need to be addressed at the level of cause, not symptom (i.e. irregularity, PMS, abdominal pain, etc). I wrote a lot about that for this post and then realized it was irrelevant, so I may post those thoughts on Monday.

2. If you think logically, you have to realize that the only form of contraception the pope is even addressing in the case of Zika is barrier methods*; hormones are going to do absolutely nothing to prevent disease transmission. And if you think logically, it should also be clear that barriers aren’t a slam dunk fix. They’ll surely make a difference, but there are plenty of people still getting STDs in America, and we have plenty of condoms.

3. A caution about oversimplification. The story I read on CNN yesterday ended with a quote from a Catholic theologian that I am guessing was taken out of context, because as it stands it makes no sense at all (here’s the original article; oddly enough, the link I copied yesterday goes to a very different article this morning, in which Bretzke isn’t quoted at all. Hmm.):

“In Catholic Church teaching, some would say it would be acceptable to try to prevent conception in cases like this,” Bretzke said.

Why does this make no sense? Because the Catholic Church has never said you can’t try to avoid pregnancy. Never. Ever. The assumption in the secular culture, even when lip service is paid to natural family planning (as it is in the CNN article), is that there are only two paths: contraception or perpetual pregnancy. The Church never said you can’t plan your family. It just says it matters to our human dignity how you do it.

4. Finally: NFP proponents also need to take a deep breath and recognize that NFP can’t prevent Zika, either. Just as it couldn’t help the nuns in the case Pope Francis invoked–the exception given to nuns who were being repeatedly raped. So it makes perfect sense to see the Pope offering this very specific exception to the Church’s teaching on birth control. He would be less Christlike if he did not.

*This argument, it was pointed out to me, is just plain wrong; I addressed that in another post here.

An Epic, Blog-Worthy Doctor Visit

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Photo by jdsmith 1021, via Flickr

Over the summer, I have been to the doctor with my kids eight times, plus Michael’s tubes and four visits to have Julianna’s glasses fixed after Michael got hold of them.

It’s always tiresome and chaotic, but nothing compares to yesterday’s ENT visit.

Let’s back up a week, to Julianna’s well child check, the visit at which I promised both her and Alex that there would not be any shots. Well, guess what? There were. Not only that, but we haven’t had her thyroid checked in four years and we’ve never seen an ENT. Since thyroid imbalance and sleep apnea are extremely common in people with Down syndrome, we needed to address both those things.

Thus it was that on a day I promised Julianna no shots, she had not only a HepA shot but also a blood draw.

It took four people to get that vial of blood–three to hold her and one to wield the needle.

So yesterday, Julianna was not happy about going to the doctor, and she was not about to believe me when I said there wouldn’t be any owies. (Heck, I wouldn’t believe me, either!)

Enter present tense narrative.

We come down the hallway of the ENT office, Nicholas leading the expedition with the confidence of one who’s been here half a dozen times. The nurses look at us, look at each other, and one says to the other, “Move that other family to a different examining room. This one needs the big room.”

Things are fine until Doctor A (resident?) comes in. The kids grow steadily more restless as we talk. Michael climbs up, down, and over me without pause. When Dr. A asks, “So what symptoms of sleep apnea does she have?” and I answer, “None,” I can see it in his face: Then what on earth are you doing here?

About this time Nicholas thrusts his head in my face: “IT’S MY TURN FOR THE IPAD!”

“Alex, give him the iPad.” They switch and I resume being used as a human junglegym while talking with the doctor, but I can see that on the floor by my feet, Alex is butting into Nicholas’ game, as he frequently does, and Nicholas is getting mad. “Alex! Back off! It’s his turn! So, doctor, you’re saying…”

We’re discussing stridor breathing when the wrestling match begins, accompanied by screams from Nicholas and clenched-jaw growling from Alex. “Hey!” I grab the iPad before it gets clobbered. “That’s it! YOU go over THERE and YOU go over THERE! No more iPad for either of you! Sit down and I don’t want to hear one word out of either one of you!”

Alex flings himself into the corner. Nicholas sits down for a minute, but then notices there’s a more comfortable chair right next to Mommy. I spend five minutes challenging the doctor on the need for a laryngoscopy while wrestling Nicholas to force him to abide by his time out.

And then it’s time for the examination.

Julianna tolerates the first ear pretty well, but steadfastly refuses to turn her head for the second. By now I have Michael in arms, and he’s tired and cranky, which means the only way to keep him from fussing is to play physical games with him: upside down, tickle, dance. We attempt to sing “I’ve Been Working On the Railroad to get Julianna to look the right direction, but she’s having none of it. I put cranky child on the floor and grab her head and hold it still so Doc A can look.

And now comes the mouth. Julianna sees the tongue depressor and shrieks, then claps both hands over her mouth, elbows at right angles to her body. I spend three minute cajoling her, sticking my tongue out so the doctor can look at me, but she’s not buying. At length, I cup her head into my shoulder and hold her still so Doc A can force her mouth open. She gags mightily but turns her head, so after all that he still doesn’t have what he needs. “No wike eee!” she shrieks (No like it), and he evidently decides it’s not worth the trauma.

He exits to get Doctor B (attending).

While I’ve been thus occupied, Alex and Nicholas have made up and noticed that there are not one, but TWO rollaround chairs in this room. Now they are chasing each other in circles, coming ever closer to the Wall Of Expensive Equipment. “Stop that!” I snap.

“But WWWWHYYYYYY?” they wail.

“Because you already popped my exercise ball with a scissors today, and the last thing I need is you demolishing half a million dollars’ worth of medical equipment!”

Doctors A and B enter the room, and we rehash the laryngoscopy question again when I realize the boys are still chasing each other. “Alex! Nicholas! I told you to stop! Are you disobeying me?”

Doctors B can see that his office building is imminent danger. He says we can take an X ray instead and makes good his exit.

And now we go to X ray.

Perhaps you’ve identified my problem: I have two boys fighting, a patient who makes the word “uncooperative” look like a day off, and Michael Mayhem, who needs a nap. Thank God, this is a children’s hospital. They call in support staff to supervise the boys while the tech and I wrestle with Julianna.

I do not see how they could possibly be getting any kind of useful picture–she’s flailing and shaking and screaming “toilet! toilet!” (which is her way of getting out of everything unpleasant, like clearing the table) and employing muscle tone that never surfaces any other time while two of us in lead aprons try in vain to keep her still and centered in front of the + sign. Surely the X rays must be blurred. But the tech takes them to the doctor and they pass muster, so we make good our escape.

And about this same moment, on the other side of town, Christian’s boss is telling him how precious our children are.

Sigh.

Who’s The Expert Here, Anyway?

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Document Imaging Man!

Document Imaging Man! (Photo credit: richtpt)

It’s no secret that I have a healthy skepticism of a lot of modern “wisdom.” This often puts me at odds with doctors. I’ve complained before about the waste of time that is a well-child check, unless immunizations are necessary, because it fills up appointments that would better serve someone who is–gasp–sick.

I get particularly snarky when doctors try to overstep their authority. They are not developmental experts; they are not parenting experts. Their expertise is medicine.

At Michael’s nine-month well-child check (one of those appointments that is a complete waste of my time), his doctor brought up bedtime routine, via a discussion of dental hygiene. I made the mistake of admitting that our routine followed a different order, and he admonished me that nursing needs to come before tooth brushing (which makes sense) and book reading (which doesn’t). Because after all, we want them to be able to put themselves to sleep, not have to be nursed to sleep.

I felt my hackles rise. You try putting four kids to bed, I wanted to say. You’ve only got one. Don’t tell me I have to do this a different way. It’s nearly impossible as it is. Michael is so distractible, I can’t get him to nurse at all while other kids are running in and out of the room, giggling, bickering, asking to have their shirts oriented the right way.

Besides, who made him the expert on child bedtime? I nearly said, “Dude. You’re like, twelve. You have one kid. I am a fourth-time mother. Don’t you dare lecture me about proper parenting skills.”

But I thought of my friends in the medical field, who often remind me that our family has greatly benefitted from the medical profession. Which is true. Although those benefits have come when doctors are doing what lies within their expertise, and never, ever when it oversteps those bounds.

Still, I like our doctor, and our bedtime routine already doesn’t work very well. Maybe, I thought, I ought to at least give his way a try.

So after a few days of teeth gnashing, I did. That first night, Christian was teaching, so I was flying solo. We nursed first–with, I might add, great difficulty and frustration (see above); then I brushed Michael’s teeth and read him a book amid the battle of getting the other three through their bedtime ablutions. I put him in bed…and there commenced forty-five minutes of screaming. He was hysterical. In the end, I pulled him out of bed to nurse some more, just to calm him down. After that, he went to bed beautifully.

I tried for almost a week to get Michael to adjust to the “experts'” version of ideal. And then I said, You know what? I know my child. They don’t.

Wow. What a concept. I know my child, and they don’t.

And this, folks, is my point. I am a fourth-time mother who has been through early childhood with boys and girls, both typically-developing and developmentally delayed. I have more than a decade’s life experiences on the doctor who sees my kids, and I have a strong sense of self and a strong vision of how I want my kids raised.

And yet even I felt compelled to ignore what I knew about my children, simply because he was the “expert.”

If I find myself pressured this way, how much more is a first-time mom going to doubt herself based on advice that feels wrong for her child?

For generations–millennia, in fact–people have been raising children without parenting books, without the benefit of research, without enrichment activities and educational apps and closets full of toys. It’s time we stop second-guessing our parental instincts. No researcher, doctor or educator knows your child the way you do. You are the expert. You can call in help whenever you need it, but don’t ever let someone tell you you’re doing it wrong. Because you’re the one who knows, not them.

Children’s Miracle Network: How Many Adults Does It Take To Entertain My Kids?

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special needs wordless wednesday

I was offline all day yesterday, and I haven’t even checked my email yet to see what kind of backup I have to claw out from beneath today…so I am merely going to share a few photos from the Children’s Miracle Network radiothon last Thursday, pictures I can subtitle “how many adults does it take to entertain my kids while I’m on live radio?”

Photo courtesy of Y107's Facebook page

I would say the answer is three, based on piece of evidence #1:

and piece of evidence #2:

(Like the flying foam bricks?)

In Which Unsympathetic Mommy Learns Her Lesson

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Photo by carpediem37, via Flickr

It woke me up sometime around four this morning, less than an hour after being up to nurse: a dull sense of something not feeling right. I’ve had a sinus infection for two days, one I’ve been trying to self-treat with Sudafed because in the last 2 1/2 weeks, we’ve already spent $90 in doctor copays and $400 in hospital/ambulance copays and $55 in antibiotics, not to mention the sheer pain in the neck of taking multiple small children to the doctor repeatedly. I’m a grownup, I thought. Surely I can handle it.

The pain crept slowly upward until it settled in my ear about five minutes after waking. Dull pain, not that severe, but so pervasive that I simply could not get back to sleep. I tried what I had told the kids: put the aching ear on top so it can drain. Nope. With odd, groggy detachment I noted the way the ache radiated down my neck, the way it throbbed in my wisdom teeth and my eye socket. Must go to sleep…three small children to take care of. But sleep was elusive.

I got up, and the dark room took on a weird, distracting lack of balance as my brain struggled to process a world in which I can only sort of hear on the left side. I took acetaminophen and a few of the eardrops the doctor gave us for Nicholas. As the liquid trickled down the ear canal, I tensed against the tickle, remembering how he wailed and screamed about having to lie still, and I thought:

Now I understand.

These last 2 1/2 weeks, mired in the Realm of Sick, I’ve gnashed my teeth and wailed, Poor me! while my children suffered and I, I admit, did not sympathize. Now, at last, I get what they were going through.

And I am off to add to our accumulated copays and our tally of pain-in-the-neck doctor visits with multiple small children. Because now…I understand.