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.”sad girl

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.

 

 

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