Friday, August 2, 2013

Back to School with Allergies is HARD!

Last week if you'd talked to me, here's what you would have heard:
It's the end of the summer and - for the love of my kids - school has got to start soon!!!
Don't get me wrong!  I love my kids, and I am thankful that I am able to stay  home with them. (Really!) We've had a ton of fun this summer playing outside, catching bugs and generally just being silly together.  But we are all seriously ready for some time apart!  Like several hours every single day for a while.  Plus the Little Overachievers need the schedule that we're forced into during the school year - the one that conflicts with my Delayed Sleep Phase Disorder (Remember my surprise Night Out back in December?) and therefore does not exist during the summer months.

Right up through last weekend, I was ready to go through the motions to extend last year's accommodations and tweak them for a new grade level.  I figured that I would meet with the allergist and pediatrician to get new prescriptions for EpiPens and rescue inhalers, as well as a new Allergy Action Plan and other paperwork that must be signed by someone with thee all important M and D behind their name.  I would drop that stuff off at school, do back to school shopping, meet with New Teachers, and then celebrate my first kid free morning since school let out for the summer.  All a matter of rubber stamping, right?
To be fair, the hard part really is done.  When I first inquired about starting Overachiever #1 in a public preschool back in 2008, I was fairly convinced that his allergies were too extreme to even consider putting him in school.  But I knew that I could not allow my fear to prevent him from experiencing a normal childhood, so I had to try.

When I first met with the school, I was determined to give everyone the benefit of the doubt.  But I was also prepared for a battle, should one come to me.  In reality, everyone at the table wanted what was best for my son - including the district official that initially feared aloud that homeschooling could be the only safe option for a child with so many food allergies.  We talked through every moment of the school day, from first to last bell.  We worked out details of transportation, where the EpiPen would be kept, who would be trained to administer, how allergens would be kept out of the classroom, how Teacher would identify allergens, and on and on and on.  For 5.5 hours, we worked on a plan that would allow my "allergic to the world" child to attend school with his peers.
Setting aside my fears and letting my allergic child go to school for the very first time...  THAT was the truly hard part!

The hard part really is past!  Now it's just a matter of making updates each year to ensure that the accommodations we have in place are still medically necessary.  Allergic students need to take on a little bit more responsibility for managing their allergens as they grow up, and they can only do that if we refrain from putting or keeping accommodations in place that are more about our comfort than true medical need.
So how do we know what is a true need?
First and foremost, we can take ourselves out of autopilot.  Accommodations that were in place last year may still be needed.  Or maybe - just maybe - we can drop or tweak them a bit.  My son's doctors are in the best position to help me figure out where medical need ends and personal comfort begins.

This year I decided to try something new.  For the last few years, I have driven 3 hours each way to have school paperwork filled out by the allergist that helped me with the transition to preschool, and then to kindergarten.  Of all the doctors on my son's current medical team, he is the only one that has truly seen just how allergic my boys are.  But we have a new allergist, and he seems to be a really good fit for us.  In 9 months, he has earned a great deal of my trust.  I decided to test him (and me!) by asking him to help us with school paperwork.

So Monday morning, I spent the morning with this new and mostly trusted allergist.  We talked about how the ultimate goal is to remove pretty much all of the restrictions over time because, by the time a typical child hits junior high, he should be able to manage his food allergies with very little required from the school beyond Epi training.  (There will always be exceptions!)  But we aren't there yet.  The allergist went over last year's accommodations with me, line by line.  I told him what areas I thought we could change and why.  He gave some suggestions for tweaks that I'd not considered.  We came to a consensus on the accommodations we both want the school to agree to, and then we started working on a new Allergy Action Plan.  (Translation: He started working on a new AAP while I dissected his patient education, requiring him to explain everything that differed in the least from what I'd been told by other doctors.)

After allergy and Xolair shots, we dashed home so that I could update my electronic files.  Then I printed off my new document and we headed to the pediatrician.  There we repeated our morning.  We went through last year's plan.  I reviewed changes that the allergist and I wanted the school to make.  The pediatrician agreed.  We are all on the same page.

Now I wait for both doctors to write letters to the school addressing a list of specific concerns that need to be addressed for the school file.  When they are done, they will call me so I can pick up the letters and hand deliver them to the school.  In the meantime, I have emailed the school with the changes that the doctors and I would like to see made to this year's accommodations.  I have also requested permission to meet with Teacher prior to the first day of school.  Now I wait for their response on both points, and the process will potentially begin anew.
So much for rubber stamping the paperwork!
What I tend to remember during the summer is that last week of school in the spring when we all have everything down pat, including the uncanny ability to call or show up just when we are needed.  What I remember in the weeks before school starts every fall is that getting accommodations in place before school starts is hard work!  

I am looking forward to school more than ever.  Only now, school needs to start so I can hurry and get to the "we've got this" phase where everything comes just a little bit easier!

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