First of all, I want to send a big thank you out to all of the people who posted comments or sent emails in response to yesterday's Part 1
post. I had some great feedback!
I mentioned in yesterday's post that the more I thought about whose responsibility it should be to administer a child's insulin at school, the more conflicted I became, and I'm not sure that I'm any less conflicted today. And the more I perused the idea yesterday, the more I realized I cannot speak for other parents, nor can I suggest what the best "solution" is. What I can do is speak from my experience, in terms of what has worked for us, and what hasn't.
As parents we all want the same basic things for our child at school: for him or her to be safe and to have an enjoyable, successful learning experience. And while every classroom is comprised of children with diverse learning needs and unique circumstances, type 1 adds a bit of a special challenge to the mix because it is not only life threatening, but is treated differently in every child. It is not like a severe allergy, for example, where the treatment is straightforward with a quick shot from an Epi pen. Too much insulin is deadly.
I strongly believe that the onus of responsibility in administering insulin to a type 1 child at school should not fall entirely on the teacher's shoulders. School administration is not a realistic option either because ideally it should be someone who is in the classroom with the child, at least most of the time, so that they can recognize symptoms of high and low blood sugar, which can vary from child to child. But the problem then becomes, if not the teacher, and not the administration, then who?
In BC we have specially trained personnel in the school called Special Education Assistants, or SEAs, whose job it is to work with children with unique learning challenges that prevent them from functioning normally in the classroom. The overwhelming majority of these unique circumstances are either physical or mental disabilities, such as autism, severe behavioral problems, cerebral palsy, down syndrome, and learning disabilities, for example and, depending on the need, require the help of an SEA on either a full or part time basis. For many children, they would simply be unable to integrate into the classroom community without the help of an SEA, and as a teacher, my gratitude for this additional help is limitless. But SEAs are in high demand and there is not enough money to employ as many of them as are needed. Therefore they are assigned to children with the greatest need. In a perfect world, there would be enough money for to ensure that every child had the ideal leaning support, but that is not the reality.
Does my child have a critical need for an SEA? I don't think so, and hence why he does not have one. As a teacher, I have seen the myriad of needs in a typical classroom, and I am too familiar with how many children need an SEA much more than my son does. I cannot justify taking an SEA away from a child who desperately needs the help, in order to help monitor Dylan's blood sugar and administer his insulin.
So how have I addressed Dylan's insulin needs at school? Dylan was diagnosed when he was in kindergarten, in November of 2005, so he was only 3 months in to the school year. He went to a half day kindergarten in a public school, and was taking insulin via syringe at that point. I would give him his morning shot at home, before school, and he required no additional insulin at school. At snack time, an SEA would pop into the classroom and supervise while he tested his blood sugar, and they would record the number in a file. If the reading was low, Dylan would drink a juice box and retest 15 minutes later, again with the supervision of the SEA. If he was high, the SEA would call me and we would reduce his morning snack and have him drink a cup of water. For the odd times he was particularly high, the SEA would make him go outside and run a few laps around the school. It always worked.
In grade 1 we started him on an insulin pump and when I went to the pump training, I made sure that Dylan was trained too, so that he could administer his own boluses. The same procedure continued at school, except that the SEA would pop in at both recess and lunch to watch Dylan test. I would always put a little post it note in his lunch listing the carb counts for his recess snacks and his lunch, and he used the built in bolus wizard in his pump to figure out the bolus. That meant all he had to do was test, input the blood sugar number into the pump, input the carbs, and hit "Act". When he was in grade 1 and 2, the SEA would watch this whole process, just to ensure that he input the correct numbers. We kept the same procedure for lows (juice and retest after 15 mins) and we stopped worrying about highs at school because the bolus wizard in the pump automatically factored in his carb ratio and insulin sensitivity factor to give him the right amount of insulin for his food and to reduce the high. As Dylan got older, and more mature and responsible with his diabetes care, the calls home became less and less frequent. By the end of grade three he was starting to get annoyed because he was always having to wait for the SEA to arrive at his classroom (she was assigned full-time to another child and only saw Dylan for bg testing), and he didn't like missing 10 minutes of his 20 minute recess waiting, so he started going ahead without her. By the end of third grade, he asked me if we could drop the SEA altogether and arrange it so that he could seek her out if and when he needed her, but otherwise do his testing and pumping on his own. That is the way it has been ever since, and he's now in grade 6.
His teacher and the office staff have all been trained to recognize signs of high and low blood sugar in Dylan and they all know that he needs juice when he's low and to give it to him if he's unable to get it himself. He has a glucagon shot at school, though no one in the school is allowed to use it. We keep it there so that, in the event of an emergency, the school can call 911 and me, and whoever arrives first can administer it (I only live a few blocks from the school). To date, we have never used it at school.
All of the above being said, we have learned over the years that the best "assistant caregivers" for Dylan are his friends. They are the ones who have been with him for over 6 years and they know what his symptoms of high or low blood sugar are. They know where his juice and dex are kept, and they know to make him take them. On numerous occasions, he has avoided severe low blood sugars because his friends have noticed a change in his behavior/appearance before he even felt low.
Would I want his care plan any different? I don't think so. The only people allowed to touch Dylan's pump are him, me, his endo, and the CDE that did his pump training. I don't trust anyone else touching it, not even family members, so I definitely wouldn't want someone at school touching it. I understand that what works for us may not work for everyone, but that is the problem with a government mandated care plan for children with type 1 diabetes. It varies so much by child that there is NEVER going to be a plan that works for everyone.
Finally, I've realized at the end of this ridiculously long post, that my thoughts on this issue are still not complete and I think the issue warrants a Part 3 tomorrow!