Children and Chronic Illness: Type 1 Diabetes

Children and Chronic Illness: Type 1 Diabetes By Susan Ingram

{4:30 minutes to read}

The NY Times recently published a detailed article on how school systems in the U.S. are failing to adequately care for students with Type 1 diabetes. What an eye-opener this was! And it’s because I know quite a bit about this subject that it was even more of an eye-opener for me. How did I come to be so knowledgeable about this issue? Here is a little background information:

My son, Scott, who is 29 years old now, was diagnosed with Type 1 diabetes when he was just 5. Type 1 diabetes is a serious illness that requires insulin to be given by injection (or insulin pump) and frequent monitoring of blood sugar levels. If something goes awry, the child can become unconscious, have diabetic seizures, and in extreme situations, even die.

So this is not an illness to be nonchalant about. It requires frequent monitoring and even quicker action if things start to unravel. And it’s up to the adults in their lives to do their best to keep these kids healthy and out of harm’s way, because children with diabetes often do not have the wherewithal or advocacy skills to ensure that their basic needs are met.

I think one example of the many challenges and frustrations we faced as Scott made his way through elementary school will suffice.

“Sorry, No Eating on the Bus.”

Starting when Scott was 7, he needed to take a bus to school. The trip could take up to an hour or more each way. I notified the bus company that he had diabetes, and that he would have to eat or drink something sweet if he had low blood sugar.

You guessed it – their response was: ”Sorry, there’s no eating permitted on the bus.” When I explained that he might pass out and have seizures if he didn’t have food or drink (in which case, they’d certainly have to stop the bus and call 911), they continued to refuse.

At that point I did what any loving, concerned parent would do who knows his or her rights. I petitioned the Board of Education to pay for an aide whose sole purpose would be to ride the bus with my son every day and help him if his blood sugar ran low. The Board of Education ended up paying an aide $12,000 per year to ensure that my son had someone to help him in an emergency. I know – unbelievable!

So imagine my surprise and outrage to read about the present-day failure of school systems to provide for children with diabetes. The Times article references numerous egregious actions:

  • Schools that tell parents they have to home-school their diabetic child.
  • Schools that won’t allow students with diabetes to join class field trips or sports practices.
  • Schools that won’t help a child if he or she is going through a low-blood-sugar crisis.

And the amazing thing is that there are laws that already exist to protect children with diabetes (as well as children with other disabilities) to have equal access to education. Yet, despite the existence of these laws, some school employees either blatantly disregard them or are ignorant of their existence. And to compound the problem, many parents are unaware of their children’s rights under the law.

It’s hard for me to believe that nearly 25 years after I went to battle for my son, these insidious practices still exist. Really, now – there’s no excuse for this. Our children deserve much more from us.

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2 responses on “Children and Chronic Illness: Type 1 Diabetes

  1. Darcy

    I regularly follow your blog Susan and this article really hit home for me. My former partner had an adolescent diagnosed w/Type 1 Diabetes at age 12. While the transporting of insulin on the bus was not permitted, the school was very accommodating with an open-door policy in the Nurses office anytime needed. This was an incredible benefit to a newly diagnosed 12 yr old girl who was needing reassurance and support. It is only now, after being a part of a situation like this for 4 years, that I see the struggles placed on parents as a result of ‘rules’ or ‘processes’ and many times to the dismissal of ‘common sense’. It certainly would make more sense to give this student an assigned seat in the front of the bus, allow him a snack and make sure he is safe & comfortable, versus paying $12,000 a year for a personal aid.

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