On Special Needs Advocacy, Diabetes, and Ignorance

Wow, I haven’t blogged in quite a while. So much has been going on that I haven’t kept up with it all.

I’ve spent much of my time in the last couple of months helping my husband with his campaign for re-election our town’s School Committee, on which he served for the past six years. Elections can bring out strong passions, and usually candidates are supported (or opposed) on just a few issues.

This election was no different, and over the course of a few weeks it became clear that one issue on the table was advocacy for children with special needs — and that people didn’t believe my husband wasn’t a good candidate on this issue. When, on a local forum, it was pointed out that as a father of a daughter with special needs, Ray felt personally invested in the cause and has advocated for years, this assertion was dismissed by the original poster, with a “pfff, his daughter has diabetes, and so what that he makes sure a nurse accompanies her on a field trip, that’s whatever.”

I held my tongue then, but now that the election is over and my husband lost his bid for re-election, which I believe was in no small part because of this issue, I am going to speak up now. Loudly. Clearly.

Diabetes is not “whatever.”

Diabetes is more than a nurse on a field trip (though that’s nice, because, you know, life threatening stuff).

Diabetes is a medical condition that can, and does, affect a child’s ability to think and learn.

Signs of high or low blood sugar (hyperglycemia or hypoglycemia, respectively) vary in different children. Symptoms of low blood sugar can include feeling shaky, blurred speech, headache, sweating, tiredness, dizziness, hunger, and changes in behavior, and these symptoms may progress to severe hypoglycemia, which causes loss of consciousness and seizures. Symptoms of high blood sugar may include increased thirst, increased appetite, increased urine, tiredness, blurred vision, and, if ketoacidosis—a life-threatening condition caused by a lack of insulin that forces the body to use fat as an energy source rather than carbohydrates, which in turn releases acidic chemicals known as ketones into the blood—develops, symptoms may include extreme thirst, rapid shallow breathing, nausea, vomiting, abdominal pain, and even a fruity odor. — Desmond Schatz, M.D., quoted from the Juvenile Diabetes Research Foundation

Now, imagine trying to think and learn at school while suffering these symptoms.

Diabetes CAN and DOES have an impact on a child’s ability to function and learn at school.

This is why, for years, parents of children with diabetes have had to fight to make the science understood, and to insist schools accommodate these children and support them equitably. We’ve had to do this because diabetes is dismissed as a “whatever” medical condition.

This is why every year my husband and I sit down with nurses and counselors and other school staff, to craft carefully the words to ensure these accommodations are met, and that my daughter is not dismissed by next year’s teachers as “whatever.”

This is the same fight parents of children with other special needs have also been fighting for years and years.

The needs are different, but the fight for parents is the same, to advocate with science on their side:

That the child with ADHD isn’t just being a troublemaker.

That the child with executive function disorder is not simply sloppy and disorganized.

That the child with dyslexia is not stupid.

That special needs children just need to be understood and helped be the best students they can.

We have been fighting this fight since our daughter’s diagnosis. Because even after all the science and exposure and explanations and advocacy, some people, like that person (or persons) in my town don’t understand what life with diabetes is like.

My husband lives with his daughter’s diabetes every day, and because of that, has always worked hard to make sure that other children with other special needs get the support and advocacy they deserve. He wants for them what he wants for his daughter. He’s fought for them as he has for her.

And to that person on that one local town political forum, I just want to say, your ignorance was sad and painfully clear, and you did exactly what you accuse others of doing to you and your children — not understanding or supporting families with special needs children.

Discriminating. Judging. Dismissing.

Shame on you.

 

 

On advocating for early cancer detection — no matter what your trusted doctor says. SPEAK. UP.

I was just thinking about all the people in the last year, all of these loved ones who died very shortly after abrupt end-stage cancer diagnoses. It has been awful. Not a single cancer was a so-called “lifestyle cancer” (like lung, which too often is NOT from smoking).

But many might have been treatable with earlier diagnosis.

I was thinking about this, not entirely because of my recent losses, but for the losses of others in my world, the recent losses others have suffered.

I don’t know what the answer is, but please, please, advocate for early detection, and PLEASE question your doctors, who are often awfully hogtied by insurance regulations and have to always treat the simplest symptoms rather than testing for the horrible thing they suspect.

When she was just three, my oldest child went for almost two weeks with undiagnosed pneumonia. Her only symptom was a fever. That’s it. No coughing, no sore throat, no stuffy nose, no rash, no nothing. For days — days, and then weeks — the well-meaning but rule-following doctors put us off for lack of other symptoms. Wait and see, they said. It’s just a virus, they said. Hydrate. Give Tylenol. Eventually, the (way overdue) chest x-ray told a different story. After two weeks, by the time they figured out what was going on, her chest — not just her lungs, but her ACTUAL CHEST CAVITY — was filled with fluid. She needed surgical intervention to save her life, to drain the fluid and repair the damage, and spent more than 10 days in a hospital. (Incidentally, this event may or may not have triggered the years-later onset of Type 1 diabetes, an autoimmune disorder which many experts believe is directly related to an emergent viral or bacterial onslaught, such as was her pneumonia.) Had anyone done the chest x-ray earlier, just days or a week earlier, perhaps the outcome would’ve been different. On many levels.

But insurance companies — and because of that, well-paid and well-intentioned doctors — don’t approve anything at first. When it could count. Err on the side of statistics is the motto.

After all, most fevers are not chest-cavity-filling pneumonia. I get that. But an x-ray after, say, day four? Maybe justified. Maybe more than justified.

And then there is this.

My dad died of end-stage, too-late-undiagnosed liver cancer, but his doctors for many, many months treated his symptoms with prescriptions aimed at relief of reflux and related stomach issues, never once scanning for something else — despite his prior cancer history.

My mother-in-law is battling for her life. She conquered cancer twice before, yet despite that documented history, no doctor was able to effectively test early on based on her new complaints. The protocol was just not approved, based on a checklist which had nothing to do with any apparent rational thought. She bested cancer twice before and might lose the war now simply because nothing was done sooner. Because steps could not be skipped.

It’s not entirely the fault of the medical practitioners.

As patients, we are routinely assessed by medical professionals and treated for the simplest diagnosis. Because that is the rules of the insurance chart. You can’t move up the chart unless all the other steps are checked. There are rules for tests, depending on age, medical history, cancer statistics, etc. Days, weeks, months pass. And all the while, disease marches on, destroying everything in its wake.

I had a mammogram today. Not because it’s on the medical charts as “necessary” (I think I might be younger than the recommended age, but these days only just?) but because 7 years ago I had a lump.

It was a scary time, that lump and all the lumpy-related scans and biopsies and nights cuddling with four kids under the age of five and reading Good Night, Moon and The Very Hungry Caterpillar and Where The Wild Things Are and wondering when someone would give me an answer and whether or not I would be alive to see my four tiny kids be potty-trained, never mind being alive to see them get married and have babies of their own so I could know they read Good Night, Moon or the story of Max  — or all the stories yet to be written — to those yet-c0nceived babies I absolutely would spoil in the way only grandmas can.

I wondered whether or not I would be alive to see my babies get to third grade.

It was a scary time, and thankfully, that ended okay. So now I get an annual test. It’s not the best way to spend part of the day, but the clear scans make the boob-smushing worth it.

Yet many women of my age (mid-40s) don’t have this exam. (Insert gratitude here for my lovies who survived even worse than I went through.)

Even more of us don’t get colonoscopies.

Insurance companies are even starting to question the funding of routine pap smears for anyone younger than, oh, 80 or something?

And almost no medical practice authorizes the regular chest screenings of patients who smoke (choose to smoke? Are addicted to nicotine? Maybe that’s why they don’t authorize tests? Because dirty smokers deserve to die?)

Almost none of us are screened for heart disease, other than through lifestyle questions.

I am in awe of the medical tests we have available to us in this lifetime. It is STUNNING to think of what doctors can see, can visualize, can touch and fix with all this technology! What we can do healthwise — what illnesses we can stop, what awful we can fix — it is amazing to consider.

We HAVE to become a society that not only expects, but demands our trusted doctors (not the faceless robots that answer our button-pushing insurance phone calls) to err on the side of caution. We HAVE to insist on something more than the wait-and-see. We deserve more than the lowest-common-denominator health care.

We have to insist on early testing. By doctors — not the paid lobbyists. We have to insist that doctors be allowed to save lives, and not just the lives of 3 year olds whose moms write poignant essays on social media, or the lives of all people who shop at Trader Joe’s and Whole Foods and somehow proved something about their commitment to quality of life and are subsequently more deserving than everyone else, especially those who eat hot dogs. Or Cheetos.

We have to insist that everyone deserves proactive health care, that no one should be denied appropriate care because some chart dictated otherwise.

Babies, moms, dads, drummers, cashiers, homeless, lawyers, teachers, taxi drivers, florists, waiters, mail carriers, the owner of the yarn shop in the town square.

Everyone deserves more than the lowest-common-denominator health care.

Everyone.

Even the dirty smokers.

SPEAK.

UP.

Diabetes Jeopardy!

Sometimes I wonder if anyone in my house can remember a time when diabetes wasn’t always on our minds.

I can’t, not really.

It’s become part of our normal, the routine, something like washing your hands before you eat dinner or  the fact that there’s homework on school days. You don’t think too much about it — it’s just there. Most days, anyway.

Some days, it’s all we talk about or think about. Maybe because Mitzi’s very high or very low or is sick or has a lot of sports or she’s rebelling in her preteen way about all the stuff in her life and diabetes management is just another boundary to push.

Yesterday, we all had diabetes on the mind because of MCAS, the state-wide mandated standardized tests given twice a year. Mitzi had her first round yesterday, so, starting the night before, we prepared. Not for the academics, though — we prepared for the blood sugars.

MCAS is a unique annoyance for Mitzi (even more than it usually is for every other child or adult who has to suffer the ridiculous things). If her blood sugar is too high, she can’t start the test when the other kids do — and can’t even start until it’s normal. And if it doesn’t normalize in enough time that she can take the test on that particular day, she has to make it up, missing class. If it happens on test day number two — well, more makeups, more missed class. Avoiding that scenario was in all of our best interests.

Blood sugar was on my mind when I woke up. What would it be? How early should I wake her up to test and find out? A low-carb breakfast was on the menu (scrambled eggs, while the other kids got pancakes). Would it be okay?

Luckily, it was. Normal at breakfast, even lower throughout the day. We discussed it at dinner, praising Mitzi for managing herself so well all day, and slipped into a general discussion about diabetes. Mitzi tossed questions at her siblings: If I pass out, what do you do? (Call 911, tell them you’re diabetic! Cooper even chimed in, “Get that diabetic epi-pen thingie with the glucawhatever!”) Is 150 a good blood sugar? (Yes!)

Joanna knows her diabetes stuff!

This led to the idea of Diabetes Jeopardy! After we finished eating, the younger three headed for their showers and Mitzi grabbed a bunch of index cards. She made categories and questions and assigned monetary values. When everyone was ready, they played. I watched from the dining room, struggling with something on the computer I was doing for Ray.

It was adorable. And impressive. A $400 question: What do I need if my number is high? All the kids were quick, but Joanna’s “BUZZ!!!!” was the fastest. “MORE INSULIN!!!!!” she shouted, jumping up and down.

Three years ago it made me sad that my small children had to know all of this. That a three and four year old had to recognize their big sister’s physical symptoms of highs and lows and know how to tell Mommy and Daddy about it.

Now it just makes me proud.

Mitzi finds it terribly annoying, the way one of her siblings will ask her if she’s bolused for the apple she’s eating, or the way that they might find me to see if it’s okay that she’s having a snack. The way everyone at various times asks her where her kit is, if she tested yet, and what the number was. Mitzi is eleven, and everything about her parents and siblings is annoying. But especially when they butt into her diabetes business.

But last night. Ah, last night, it was okay, and for the first time ever, diabetes was kind of fun.

Happy Birthday to my oldest baby!

It’s about 10 degrees outside, the perfect day to hunker down under a blanket with a cup of tea and a good book. But I am not doing that. Because it’s a big day around here. (drum roll, please…)

Happy 11th Birthday, Mitzi!!!!

So, today, in between the work I’m doing, I’ve been baking a cake, wrapping presents, and crafting a special card for the birthday girl to let her know what her biggest gift of all will be (a bedroom makeover!).

It’s been a fast 11 years, and so much has happened. She’s survived hospital stays and chest surgery and a diabetes diagnosis. She’s grown enormously — both in size (she’s almost 5′ 3″) and in creativity and intelligence. And even though she’s entering that gnarly pre-teen years and can be downright moody and edgy sometimes, mostly she’s just my baby. Even her little-girl curls are coming back, though now her hair is more brown than blonde.

So, back to it. Lots to do to prep for the afternoon celebration. I have a purse cake to make, gourmet chicken fingers to wrangle, and nineteen other things to do. All the while I’ll probably be reflecting on her baby time, the little girl time, maybe even squeeze in a few minutes to peruse a few old photos. It’s entirely possible that I’ll find time to shower.

It’s a cold day outside, but inside — well, the party is just getting started!

Cheers!