What Back-to-School Looks Like for a Special Needs Family

We are just weeks into the fall semester and when people ask me, “getting into the swing of things?”  Or “getting a routine down?”  I honestly don’t know how to answer that.  Preparing for going back to school for us doesn’t look like everyone else’s preparations.  Here we are with 3 children entering kindergarten and 3rd grade so this should be a piece of cake, right?

Sure, we followed the school supply list to a T.  We washed and prepped uniforms.  We stocked their drawers with new, white socks.  We even got new tennis shoes and hair bows.  We upgraded lunchboxes and headphones.  And that’s for 2 out of 3 of our kiddos.

For our other kiddo who has special needs and attends our neighborhood public school, the first few weeks of school look quite different.  And even though this is the 6th school year for him, we still feel like first-timers every single time we send him off.

We may not have a long list of school supplies like pencils, notebooks and crayons.  Instead, our teacher wish list consisted of new binders for the daily communication sheets that are sent home which include a log of food intake, activities, dirty diapers (including #2, size and consistency), and meds taken.  

These are the things us parents want to know, need to know, so “yes” I will supply the teacher with a new binder for each student in her classroom.  They take the time to do what is important and what we would be doing if our children were home with us.  And “yes”, I will supply a power strip to support all the iPads, communication devices, adapted toys that our children use in the classroom as teaching aids.  They don’t need dry erase markers and highlighters.  So, let’s give the teachers the tools they need to teach our children with special needs.  

What else is on that list of things to do before going back to school?  Going to meet the teacher night with 3 tote bags full of diapers, wipes, jugs of water, feeding spoons, drinking cups, bibs, changes of clothing only to find that every handicap spot and every reserved spot for families with special needs students is taken.  And it’s 1,000 degrees outside.  We then need to make sure we cover everything in that 1 hour that his teacher and nurse kindly allotted to me to catch them up with how he’s been doing, his new likes/dislikes, new words, etc.  Signing off on medication logs and seizure action plans are also part of sending our kiddo off.  

Then, we send our child off on a bus with a driver who doesn’t really know our child, doesn’t know how to calm his sensory issues or keep his body temp regulated.  (That’s a whole other blog post someday once my nerves are settled).  Not only does our son arrive to school in his wheelchair with a backpack full of more stuff, a wheelchair tray, possibly his communication device, braces on his feet, lunchbox with a million ice packs in it and every snack and food choice imaginable because we just want to make sure he eats enough, he now has to meet new faces — new therapists, new paraprofessionals/aides, new classmates.  

For a kiddo with sensory issues, this is a lot — not to mention what he senses from his own mama.  This mama dreads back to school.  I anticipate him screaming so loud that the neighbors can hear and don’t know what they can do, if anything, to help calm our kiddo as he gets loaded onto the bus.  I am nervous every day when reading his communication binder to see if he’s eaten enough, drank enough, or finally had a bowel movement.  It worries me to see his red, sweaty face when he gets off the bus in his sweat-drenched shirt.  I am anxious about the new faces in his classroom and if they will understand what he needs and who he is.  

But what I will say, as I’ve said many times in the past, is that I follow his lead.  In his own amazing ways, he tells me that everything is ok and that this school year, like every year prior, will be the best one yet.

So, as I eventually calm my nerves and we get into somewhat of a groove, I’m always thankful for new starts.  But when asked the questions I mentioned above, the answer is “no” we don’t easily get into the swing of things, and “yes” our version of a routine may be very fluid, but it works.  We call it more of a groove and we just go with it — wherever our kiddo leads us — and that’s the best we could ask for with each new school year.   

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