Friday, January 18, 2013

Building Wings

Let me preface this post by stating I feel really blessed that we just happened to move about 6 months before Alex was diagnosed with Type 1 Diabetes and that move meant a new school. Alex is fortunate to be in a school with an extremely competent and compassionate school nurse who has a good background in diabetes care AND in a school where there just happens to be 4 other children with type 1 diabetes. She is not alone. We are indeed having issues right now at school but I honestly don't think they are unique to her school or the staff and I'm looking through my rose colored glasses that we will resolve whatever issues there are. I have had so many positive interactions with Alex's school staff and teachers that I believe we will indeed figure out solutions to the problems. But...I need a place to pour my thoughts out into. So here I am...

This is our first full year in school with diabetes. This is our first year in school with an insulin pump and Alex's ability to self-manage her blood glucose checks and administer insulin through her pump. It's new territory, and for a while, all seemed well with management and Alex's performance at school. Slowly but surely though we've hit some bumps. Alex's grades are falling and the fact that her reading grade has fallen when she has always been a strong avid reader sends my alarm bells in my head sounding off at full blast. Alex has also resorted to "waiting out" a low...because she doesn't want to miss something - be it work in the classroom or time on the the point that she is in the 50s when she hits the health room...and she KNEW she was low before then. Houston...we have a problem...

I started noticing a few things in late fall/early papers Alex suddenly would have half done and she's be scrambling to complete 10 minutes before the bus in the morning...papers I didn't know she had because she assured me she had no homework outside her normal homework packet the afternoon before. Apparently these papers were work she missed while in the health room. We've also been struggling since the beginning of school over her daily agenda - the notebook where they write down all the objectives for the day and then I sign it each afternoon noting I read it. Well...I'd say 3 out of 5 days Alex comes home with a blank agenda. She says it's because they complete at the end of the day...when she is in the health room. She says she doesn't have time before then to write it down. I've tried to work with her. I've contacted the teacher twice to mention that this is a problem and to please try to work with her. But it gets better briefly and then resorts back to missing agendas. I write notes sometimes in the agenda and get no replies.

I didn't realize until this past week that apparently a student in the class checks the agenda and marks if a student didn't complete it. Then that list is given to the teacher and the students lose recess (stand against a wall). Well...Alex has apparently stood at the wall several times. She NEVER told me. The school nurse called me early this week to tell me she was frustrated because Alex had a particularly bad day with lows. At the end of the day she didn't show up until 5 minutes before departure (instead of 15 minutes before departure) and was 60. She said it was because she had to get her agenda done so she didn't lose recess again. Then she RAN from the nurse and got on her 60! The nurse ran after her and she refused to listen. The nurse managed to get her a Quick Stick...when the episode ended, I got a call. And that was the first I heard of the recess issue.

With that information things really started clicking - this missing Agendas; the 0s and bad grades on assignments because they weren't done or weren't  complete (and I only know this because of the online grade system - I'm not getting papers back in enough time to see them before something can be done). My girl has been struggling to keep up between missing class time and getting in trouble for not doing things when she is taking care of her diabetes. Now wonder the last few weeks when something is half done and I explain she'll get a bad grade if she doesn't finish it, she says "I don't care."...I know she is exhausted and stressed out. It all makes sense.

I really don't think the teacher is purposefully penalizing her for diabetes care. I think she's a teacher with a full classroom of kids (30?) and not paying attention to trends. Alex isn't failing. She's gone from a high 90 percentage in most classes to a low 80 percentage. Alex has told the students marking her for missing agenda it's because she is in the health room but she has NOT gone to the teacher. That doesn't mean I think it's Alex's fault or responsibility. I'm just saying I don't think the teacher is bad or trying to purposefully penalize Alex for her diabetes care. It's just a consequence of NOT paying attention to Alex. And I don't set the district rules for crazy 30-40 kid classroom unfortunately even if you have a ridiculously large need to be aware of my kid. And...I don't think 9 and 10 year olds should be in charge of making lists of kids who lose recess privileges...I'm hoping there is more to that procedure and Alex didn't give me the full story of how grading/discipline is dished out...I'll be asking for clarification for sure.

So after obsessing for a few days over this problem and contacting the school for a meeting now scheduled for next week, I've come to a few conclusions:
  1.  Alex needs to spend less time walking across the entire school to the health room (opposite end of the school!!!)  for every single morsel of food she comes in contact with. That means she should self test/bolus for snacks and before recess/PE. She should STILL go to the nurse for lunch and 15 minutes before the bus ride home. If she is having a great day, that means she only visit the nurse twice a day. I can live with that.
  2. Alex needs to be reassured and given more opportunities to get work done that she misses when in the health room or at appointments
  3. Alex should never be given a poor grade when an assignment is not complete until the teacher has verified she blew it off. If she was not in the classroom, she should be handed back the assignment to complete in a reasonable amount of time. 
  4. The teacher needs to make an alternative time of day for Agenda copying. End of day is NOT working.
So we meet next week and review her IEP. I'm hoping we'll work out everything. The one thing that seems to be of concern is the blood glucose testing in the classroom. I know that testing in the classroom is fully allowed legally and plenty of kids even if my school isn't accustomed to it, perhaps we can sort out what fears exist and get moving on this new plan. I think Alex losing 10+ minutes each time there is a snack or a party treat AND each time she has recess (twice a day) is ridiculous. If her number is in range, why not let her take care of herself? There seems to be fear she won't test on her own or she'll have trouble with carb counting. I say give her the benefit of the doubt. She gets her own snacks and boluses at home without checking with me unless she has questions about the carbs and she makes efforts to get my help when she needs it!  They are seeing an issue at school with more severe hypos and hiding them because she is frustrated at missing class time. Let her test herself and prove she is responsible. It isn't like we can't check her meter.  I know my girl...she is asking to test herself at school. She is able to bolus appropriately. She is angry she is being made to be dependent on the health room and lose out on time with friends and class work. Let her fly...I KNOW she can do it.

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