Wednesday, September 17, 2014

A T1D Mom's Miscommunication

With school back in session for around three weeks, teachers are busy with assessing placement.

My own two have been taking tests to see where they rank and also, to provide a guide to their future years' learning.

Mostly, I sit back and wait to see what happens.  Certain tests are more important than others, but at the end of the day, it is always about 'doing your best'.  That's all anyone can ask for.

Today, as I was wrapping up part of my at-home desk work, my personal cell phone beeped with a text update.  Glancing at the clock and realizing it was not an expected lunch time, I was instantly on high alert for whatever it was about to tell me.

Youngest Daughter:  Mom, I have to tell you that I did really well on my SRI (standardized reading assessment) and I am 238.

Insert a panicked look on my face.  A 238 SRI score isn't even near a 6th grade reading level.  She had to be having a HIGH blood sugar.  Or worse.  Or did she just blow it off?  How on earth do I respond to her text?


More silence.


Me:  Okay.  Well you did your best and I am always proud of you.

Youngest Daughter:  Thank you!  I am proud too.

Huh?  Her comment makes no sense to me but I figure that a text while she is at school is not the time to deal with it.

Later that day........

Not too much longer and I am anxiously awaiting her arrival.  After the bus drops her off, I casually broach the subject.

Me:  Soooo.  You sent me your SRI score today.

Youngest daughter:  Yes, wasn't it great?

Me:  A 238?

Youngest daughter:  What?

Me:  Did you get a 238?

Youngest daughter:  What in the world?  No, I got a 1028.  Where did you get a 238?

Me:  From your text message.  Wait, you got a 1028?  That's awesome!

Youngest daughter:  Oh geez mom.  That was a 238 mg/dl!  Seriously?  You seriously thought that I scored a 238??

Yes, this is a very true story.  

Tuesday, September 9, 2014

Establishing a Diabetes School Team

My philosophy with school and T1d is that the best outcomes happen when you take the time to establish a diabetes team.

In middle school, besides the Naturally Sweet dad and I, our diabetes school team consists of our medical doctors, my children - yes, they are key players on our team, a 504 coordinator (our assistant principals), the teachers, the lunch staff, the bus garage coordinator and our bus drivers.  Each person is instrumental in ensuring that our children get an equal and fair shot at academic success.

And if you haven't done this, don't fret.  There is still plenty of time to open the communication lines and start. 

To help start the conversation, each year I create/revise a 504 document that outlines the accommodations that my children will need to be successful at school.  Since I know that our team is fully of busy professionals, I also create a simple stop-light chart of diabetes symptoms and blood sugar ranges that can be used at a glance.  After updating the documents with current school pictures and symptom changes, I email both documents to our school 504 coordinator and request a meeting to review and acquire proper signatures from each team member.

During the meeting, our diabetes school team reviews not only the 504 document but also a health care plan, acknowledging with signatures, that our hospital creates that outlines the seriousness of T1d.  The health care plan helps to legitimize the need for medical care and to also, connect our school to the endocrinologist - whom is the ultimate resource should anything happen to our children and I am unavailable.

In the early elementary school years, I met with each teacher directly at this meeting.  My children were both so young that I was fearful of their ability to even communicate in general, let alone speak up about highs and lows.

I would (and still do) bring expired Glucagon to allow the team to try out an injection in a calm environment.  The team loved having a chance to see the Glucagon and to know how it works BEFORE having to use it.

Because of my children's young ages (3 through 10 years old), the early elementary school diabetes team also included a floating Parapro that was assigned to assist with checking of blood sugars and counting carbs.

Our schools, like many around the US, did (and still do not) have assigned school nurses.  Having a floating Parapro was a wonderful help to our team.  Teachers need to be able to teach and secretaries (and let's be honest!) need to run the school.

Many people have recently asked me how we went about in securing a Parapro and my answer is simple:  Establish a team and meet.  Coming together with your team will help identify the need to have this invaluable assistance.  In our case, the 504 coordinator listened to the concerns that our teachers had about being able to teach AND watch for sudden blood sugar spikes and drops.  The secretaries mentioned concerns about the office chaos and being unable to immediately assist a child in dire need.  Not to mention that the office is also the adjacent home to the sick room, which ultimately could make a child with T1d much sicker than they started upon entering.

When all of this was brought to the attention of the 504 coordinator, she was able to brainstorm for ideas.  It was then discovered that an aide assigned to another student had room in her schedule to also be assigned to my children.  In sharing services, we were able to accomplish what we needed to effectively keep my children safe.

At the end of the elementary school days, we also spoke to the new middle school coordinator and decided that our children would make the transition without an aide.  This allowed us to start building in a bit more independence with our soon to be 5th grader and to also, teach the 5th grade teachers a bit more as they would become the main contact for care (not the Parapro).

The diabetes team would not be effective without communication.  At the beginning of every year, I still make sure we exchange phone numbers, emails and even set up loose blood sugar testing schedules.  Having us all on one page is what has helped to keep us successful.

I also want to share that there may be times where communication breaks down.  If at any point that happens (and sometimes it does), don't struggle with individual team members.  My best advice is to call a review meeting and go over what is working and what needs improvement.  In the beginning, we had a lot of 'lessons learned' about lunch time, recess and PE, especially in first grade - our first full time/full week of school.  That year, we chose to have three big team meetings.  One in September, one in January and one right before school ended.  As we were the only family in the building with T1d, this was a big eye-opener with setting up a plan for all future students.  We wanted to get it right and make sure it worked.  As it turned out, not much later and our oldest daughter was also diagnosed.  I am still thankful that she was able to transition into a very smooth system.  While it wasn't perfect, it was so much than before we started.

Yes, it is a lot of work and yes, I am exhausted each year.  But it gets easier as the girls become older and especially as they have started to co-captain with me.

Not to mention that our schools now 'know' our family and through learning about successful T1d management have helped us transition to upper grades.  Even though oldest daughter is only in 8th grade, her 504 coordinator has already started laying the tracks for a successful high school transition next year.

We couldn't do that without having our team.

Sunday, September 7, 2014

On and Off Middle School Perspectives

School has officially been *on* for a week.  In that way, it is much like an imaginary switch that one of the kids flipped.  Off for summer and then, suddenly on for fall.  

How on earth does that happen so quickly???

The first week happened with much success and only a few minor mishaps.  Day one and everyone was 'on'.  The typical back-to-school excitement meant excitedly packing ahead of time.  Not one bit of T1d preparation was overlooked by either daughter.  Emergency snack boxes filled, paperwork prepared and kids cleaned and polished; literally, as they had enough nail polish out to decorate all of the fingers and toes at their school.

Days two through four were a bit more 'off".  Youngest daughter forgot her test kit one day, her lunch another and her Dexcom on the last day.  Bravely holding back tears, she sent me text messages with each woe.  As this is kid number two in middle school, I had more 'fixes' in my mom bag of tricks and was able to problem solve easily.  We decided she would use the spare meter, buy a hot lunch and test her BG more often.  Problem(s) solved.

And a huge thank you to oldest daughter for being the first to help mom through these many situations because I am quite sure that when it happened the first time and it surely did, those mom solutions were not so calmly ready to go into action.  

Oldest daughter didn't escape entirely unscathed either.  Over the summer, her teen sleep pattern left her with staying up later than me and sleeping until 11:00 a.m. or when I shouted from the bottom of the stairs.  At her school, the start time requires her to be up at 6:00 a.m. and out the door before 7:00.  Even though the Naturally Sweet dad and I suggested numerous 'GO TO BED NOWisms', she stayed up later than she should have and felt exhausted by 3:00 p.m..  Her blood sugars reflected a bit of the exhaustion too and more than normal low blood sugar corrections to contend with.  As the week went on, sleep came more willingly and thankfully, blood sugars behaved too.

More than anything, several great accomplishments occurred.

First, my girls are now bus riders.  As it so happened, this is the first year that I felt comfortable enough to make the switch and it is also the year where my girls are on two different times/routes.  A week in and both have had great success and feel slightly empowered.  Probably strange to kids who have been riding the bus for years, but this is a taste of a bit more independence for all of us.  

Secondly, oldest daughter discovered that her schedule was NOT allowing for enough time to move between her fourth period, to the locker and back to the cafeteria AND testing her blood sugar soon enough to pre-bolus for lunch.  For the first time without mom's help, she decided to bravely speak up to her fourth hour teacher and suggest testing a bit sooner in class so that she had enough time to eat.  The teacher was more than happy to accommodate and also asked for any other suggestions that oldest daughter might have to help keep the hour running smoothly.  Between us parents, that's another hefty dose of independence for oldest daughter.  She is finding her voice and discovering that speaking up is worthwhile.  Little by little, this is how I know I will one day be able to send her off to the college of her dreams.

Finally, youngest daughter was moved into a new homeroom that allows her to utilize some of her awesome math skills.  I am beyond thrilled because this is a perfect fit for her.  She is also lucky enough to have a teacher that is the aunt of a student with t1d and knows the ins and outs of care.  It is great as I can see how relaxed this has made youngest daughter.  The significance of having someone that is fully trained was not lost on youngest daughter.  She has been beaming since stepping into the classroom.  For the first time in a long time, I listened to her on the diabetes baby monitor as she giggled in her sleep.  Pure joy.

Which leaves me with this; my heart is full because I know my girls are happy and my dear friends, this is the best kind of way to start a new middle school year.

Busy weeks to come and I apologize for not writing more often.  Trying to find my own balance now that school is in session.  It will come, just takes time and figuring out a new routine.