And waiting and waiting and waiting

Insulin Pump 

I really wanted my next entry to be about getting our son started on an insulin pump but NOPE!  We are still waiting.  Insurance would've covered our insulin pump at 6 months post diagnosis which was June 9th but it is now Oct 17th and we have yet to start. We actually have the pump in our possession now which is a big jump from where we were in August when I last posted but it might as well be a paperweight.

We did our pump assessment class through "independent study" and two weeks ago we took the 2nd class which was via zoom.  First we received an email with handouts to read, which we read.  Then we logged into our meeting on our assigned day/time and waited for over twenty minutes; technical difficulties. When we did get into the meeting our trainer read all the handouts to us from a powerpoint and then we were told our pump orders would be sent to our pump rep after the class and we should expect our final "pump start" class to be scheduled by our rep.  

Two weeks and counting and we continue to wait.  I've reached out to children's again and been told that they are a bit behind but they would try to do it that day...that was last week.  There isn't anything to be done either which is the most frustrating part.  I don't want to be the parent that gets a reputation for being mean or aggressive but I FEEL LIKE getting mean and aggressive.

School & Coronavirus

So we've been back to school in all it's remote/distance weird glory.  We'd hoped to start our son on his pump at the beginning of the summer to alleviate the added stress the beginning of a school year can be for a family with two teachers as parents. All four of us "go" to school.  Not this year though.  No insulin pump really prevented us from feeling our son could be on campus when it opens; his school is fully remote now anyway but we signed him up for 100% virtual for the whole year.  Our older son is a Senior this year and he chose 100% virtual as well.  I'm back to campus full time with K-2 students with exceptional needs and my 3-5 graders will be back in a week.  Things seem to be going well so far but some students have arrived with fevers and the "social distancing and health" measures that are being promised aren't being enforced with fidelity.  I anticipate illnesses will be spreading in our building this winter. 

And we're waiting, and we're waiting, and we're waiting

No news on the insulin pump.  I'm bummed.  We heard from the omnipod rep that our insurance is back to approving these prescriptions and she had us contact the pharmacy that we'll need to use to ship supplies to us.  She texted the other day and asked if we have received any supplies and I got my hopes up.  I'd messaged with her at the beginning of the month and she'd told me she had checked our paperwork at Children's and that we were ready for when the update came but...nope.  According to our health insurance there has been no prescription for the insulin pump pdm, pods, or a change in insulin order.  

Ugh!

I'm not surprised but I'm not happy.  I wanted to believe the medical team we met via phone three months ago who said we'd be fine to start on insulin pump therapy but would likely need to take a zoom pump therapy assessment session (they didn't have them yet but they were sure they would be starting them soon since Covid19 had suspended a lot of in-person care).  I wanted to believe the rep from Omnipod that the paperwork was done and we were just waiting for an update to the omnipod.  I wanted to believe just yesterday when I got that text that we should've started receiving supplies by now.  Wanting something is just not enough.  I emailed our endocrinologist and explained all the research and reading we've done and how ready we believe we are.  I texted the rep back and said we've spoken to insurance and the insurance approved pharmacy for shipping.  I, in fact, did talk to several people because I've already found you have to get transferred through several people before you get someone who knows anything about what you are asking about.  

I'm not 100% sure where our hang up is or what I can possibly do to expedite things.  We want insulin pump therapy for our son, he wants it too, we researched and reviewed and tested and chose a pump, we've spoken repeatedly with the insulin pump company, we've tried expressing our desire to our medical team and we've done a lot of WAITING!  

We have about five weeks before we all start back to whatever crazy shenanigans will be our new school year.  Both hubby and I are teachers and both kids are still school-aged.  None of us want to do the thrown-together-emergency-work/teach/learn-from-home again.  Only five weeks and our district hasn't announced exactly how things will be worked out but they have announced some "options".  I do not want to start figuring out a new piece of medical equipment in the midst of all that but I'll do it for N because I believe it is best for his health.  It's just, it would be easier if we could do it now before the **it-storm starts.

I appreciate that we have these great advancements in treatment options for my son.  I'm thankful that he is living day to day pretty much the same as if he didn't have a chronic health condition.  I'm NOT living the same.  I'm harboring my worry and my concern and my advocacy and my frustration and my impatience.  On a positive note, I phoned a friend about my frustrations and she is wonderful.  She told me she reads this blog sometimes though so now I feel weird writing about her.  She's currently waiting and working to get her daughter a G6 so she gets it.  She is jumping all the hoops but the hoops keep moving and so many of the ones you jump don't seem to move you forward or any closer to your goal at all.  What a messed up system.  I'm going to pour myself a glass of wine and I'll raise it to my fellow T1D mom's tonight.  Keep jumping those hoops ladies!

2020 School Year End

Today is the last day of the 2019-2020 school year. 😏

This year has been quite the adventure.  We got my son's type 1 diabetes diagnosis in December.  My school was closed for snow then when we got back we had a water pipe break and flood part of the school over a weekend and we were closed again.  On March 13th our schools closed due to Covid19 and we've been "distance" teaching and learning at my house.  In the midst of this the black lives matter movement grew exponentially with protests and rallies.

Many years ago, I read a research report on the effects of watching the news in the United States.  I don't remember how I came across it, probably sipping coffee in my pjs while my family slept in.  I often go down a click-road and am often surprised at where I end up.  The research showed that the amount of news watching a person did was directly correlated with the level of unhappiness for that person.  What?  Yes, people who watch the news are unhappy!  Maybe people who don't watch the news are happier because they are oblivious but I know watching the news doesn't bring me joy so I often don't do it.  I rely on my friends and relatives to just give me the important and big events condensed and without the sensationalism.  So then along comes a global pandemic and I'm home all day every day...

I'm not watching the news but I am reading it.  I scroll through the internet in the mornings and peruse the main news topics.  What a bunch of jumbled mess.  I guess I've come to the time in my life when I will now say "back in my day".  I admit I never gave much though to the news and it's legitimacy when I was young but I fantasize that at one time our news was reporting facts.  It probably still is but it is difficult to tell right now.  It seems to be that "news" is just a blatant attempt to out-shock the competition.  This morning in my "news feed" there were four articles back to back that each contradicted the other.  Chasing down my own information was difficult and when I finally was able to find a source I felt confident was providing some research-based information it didn't seem to support any of  the sensational articles I had just read.  I have the time, ability, and desire to chase down a source but many people don't.  I'm guessing they only read the article with a title that matches their opinion or if they read multiple articles they would lean towards their existing opinion because there is no compelling reason given not to.  

I'm digressing...

The school year is over.  For me, and several of my students, next week is going to feel exactly like the previous three months.  I will sip my coffee while my family sleeps, review student's responses from the previous assignment, set a new learning target or make an adjustment to the lessons, and create their assignments for the day or week.  These students will follow the routine their families have set for them and I expect to see each student submitting work pretty much in keeping with the time they have been submitting work for the past three months.  I will still be joining zoom meetings with select groups of colleagues as we try to plan for re-opening in the Fall without much in the way of guidelines or accountability from those who set the guidelines.  

But mostly, I'll have my days to enjoy the sun and my family and sit on my porch with my book and glass of wine or a lemonade. My mind may try to race from the sensational news to the uncertainty about the coming school year.  I will review my social media and try to skim over everyone's personal opinions on masks vs. no masks to enjoy pictures of friends and family.  Time marches on and it will this summer too.  My plans have changed since R & I were planning a wedding ceremony for July but we've cancelled/postponed it.  We feel married already anyway and whenever we have the ceremony we want our people to feel safe to attend.   

Are you still writing?

Notes & Things

I write little notes on my calendar when I'm happy or stressed.  I don't write them the day I have the thought but I move the calendar forward a month or two or three and write something and then I find it again.  In May these were the notes: 

• Remember when you thought you'd never get a CGM? 
• yep...now I feel like we've had it forever 
• Bet you know the carb count on all the favorite foods by heart now.
• we still have a whiteboard with lots of our common choices and their carb count in the kitchen but I almost never look at it
• R is the best! "I'm thirsty"
• so we were watching a "redneck" comedian one night and he was telling about how his wife said she was too hot and he put down his book, got out of his bed, and adjusted the thermostat - it was a fun show and R and I laughed and laughed at that one since I had just finished commenting that I was thirsty and R got up and got me a glass of water

So a friend asks me a few days ago if I'm still writing.  She knows I was writing a "journal" about my son's diagnosis and how we are all adjusting to that.  I am still writing but clearly not as much and there are two main reasons for that.  First, we are so much more confident in our management now that things don't stress me quite as much as before.  At least, that is what I'm telling myself but probably I'm just more accustomed to this stress.

Second, I'm struggling with the learning curve of becoming a "distance education" provider and it has me on my computer for 4-6+ hours a day.  By the time I have my own time in the evening I do not want to look at my computer and if I do bring it to the couch with me I just end up working some more.  And, of course, both my boys are distance learning right now too.  My teen doesn't need much support to get his schooling done but my 5th grader needs a lot of prompting and cajoling to get any work done.

I've always liked the challenge of picking up a new skill as long as it is something I feel passionate about.  I like the feeling that I don't have it yet but knowing that I will get it.  Thank goodness for that too because I am learning a lot as an educator right now and if I didn't enjoy the push I'd be a quivering mix of exhaustion and frustration.  The high needs programs in my school district met early and frequently when campus closed and we've come a long way.  At my previous school I had a teaching "partner".  She taught the younger grades and I the older right across the hall from each other.  We co-planned, vented, and supported each other and I took that for granted a lot.  It is one of the things I've missed the most in my current position.  

In my current school, I am the only high needs specialist in the building.  Students with this level of exceptional need have only been in this building for the five years I've been here so many teachers have very limited experience with students with ASD or Down syndrome or the other lower incidence disabilities.  I've missed having someone right there to talk to about students, programming, supporting paras, and supporting general education teachers.  

When the campus closed the other two high needs elementary teachers and I made a plan to work together and try to keep our programs aligned in what we were providing and I had a professional community again. We meet weekly and we are keeping each other moving forward and growing.  We agreed on several points right away.  

1. Keep our students connected and supported with calls, live sessions, and videos. 
2. Provide respite when/where we could for families who are used to multiple services and providers who would suddenly be "on-their-own" 24/7.
3. Focus most of our attention on creating supports that could carry forward into the coming school years rather than investing our valuable time in things that would only serve our students in this crisis teaching
4. Keep our IEPs and Evaluations up to date and make amendments when campus reopens

So that is where all my time is going.  We started with some maintenance level binder work and tools that students were familiar with and could do with minimal adult support (for students who could do that).  We were hoping this would give families a way of giving a work task and walking away for 10-15 minutes.  Many families have been able to do that.  

We also set up online learning sessions for families who wanted that option.  I had one family who wanted daily sessions immediately and other families have added them as the weeks have gone on.  At one point I was running 12 live sessions per week but we're down to 6-8 session per week now.  Some families scheduled sessions and were not able to regularly login for them but we kept trying.  For those that are consistently showing up, we're now able to provide positive interaction and social connection, minimal instruction, but we can do some valid assessment of skills that are being taught on our new learning system.

We adopted two new learning systems.  Unique Learning Systems with News to You and Seesaw. I've used News to You for years and really feel it has a place for some of my students but since none of them had used ULS before I couldn't find an easy and intuitive way for them to use it during the closure.  I am definitely seeing the potential in the units and plans and am looking forward to using it for years to come in the classroom.  One of the other programs is relying primarily on this learning platform as her students are firmly at this level.  

The other learning platform, Seesaw, has become my new favorite thing!  It allows us to post our own teaching video and a follow up activity that is interactive for our students.  For my program, we've had over 200 assignments submitted since closing and that is with only a handful of students participating.  I'm going to use Seesaw for years to come and I'm pretty excited about the potential.  For now, it is giving us a way to try to get learning and instruction to our students that is differentiated to their needs and abilities.  

With these options I'm reaching 11/12 of my students.  That last student may be participating in the print work we provided for him but I can't be sure of that.  His family is working at this time and since I can reach them by phone about twice a month I know they are doing their best and just trying to get through day by day.

My first year as a teacher (a million years ago) I had a mentor who was a resource room teacher.  She later became my principal and ultimately is now serving as a curriculum director.  I took her for granted a lot too but I always think about her.  I read somewhere that people don't always remember what you say but they remember how you make them feel and this woman knows how to make others feel heard, valued, and accepted.  I've tried to take a page from her book and be a person that makes others feel valued. We are so very disconnected from others right now and yet it seems to be the one thing that everyone can agree on: we need other people.  We need and want that connection.  So I try to continue to reach out to my colleagues and friends and be available to them as best I can.  I'm pretty good at video calls now so dial me up.  A couple months ago if you told me I'd be staring at myself on zoom for 3+ hours a day I would've thought you'd lost your mind😀