girl in a wheelchair

What “Back to School” looks like for us

For parents, the first day of school is typically fueled by varied emotions.

Excitement, anxiety, and hopefulness are often accompanied by a bit of retrospection.

Summer has ended and our children are a whole year older.

For some, there is a great sense of relief, as the return to routine commences.

As a mom, I’m enthusiastic each year for a fresh new beginning. As a mom to a child with multiple disabilities and special needs, I’m also TERRIFIED.

The anticipation of dropping her off and being away from her fills my thoughts with worry.

Will all her needs be understood and met? What if she has a medical emergency and I’m not there? Will everyone show her kindness and compassion? What hurdles and fights will we encounter this school year?

On the first day of sixth grade, as we head out the door, her brand new, pretty, pink bookbag is overflowing.

“Ordinary” school supplies aren’t causing it to burst at the seams.

There are no pencils tucked inside.

There is no ruler or pair of scissors.

She won’t require notebook paper or a calculator.

Her heavy bookbag hangs off the back of her wheelchair, holding more vital, necessary items.

It contains pieces of her life that must travel with her, everywhere she goes.

Over and over, I nervously review my mental checklist of things she will need:

Diapers, wipes, diaper cream, extra clothes…

Seizure medication, syringes, seizure rescue medicine, portable blow-by oxygen tank…

Seizure emergency plan, medical diagnosis forms, medication administration forms…

In place of the cute, one-page “All about Me” info sheet that young children take to their teachers on the first day, my daughter has an extensively organized BINDER.

It is a bulky, three-ringed notebook, complete with a breakdown of her diagnoses and how they affect her day-to-day life and learning.

It is jam-packed with information on her strict diet, sensory needs, seizure triggers and interventions.

Along with the overstuffed bookbag and the ample binder, our van is also teeming with a plethora of other essential daily items…

Ankle-Foot Orthotics, Knee-Ankle-Foot Orthotics, Speech Generating Device, a lunchbox adorned with unicorns and filled with pureed, dairy-free, and gluten-free foods.

As we get ready to leave home, I can see the happiness in her eyes when I ask her if she wants to go to her “Big School.” She claps her little hands emphatically and a sweet grin stretches across her face.

I squash down my fears for the moment and relish in the pure joy that she radiates.

When we arrive, I summon the courage and work hard to hold back the tears.

I am sending my non-verbal child with complex medical needs out into the world again, and it is scary.

As I push her chair up the walkway and watch her delight, I remind myself that her very competent team is in place and her education and medical plans are solid.

She needs this…I need this.

We greet her wonderful teachers; they offer me much empathy and ensure me that my child will be well-loved, and in good hands.

A few minutes later, I have a quick cry in my van, and realize I didn’t even capture the occasion with a photo!

I then dash directly to Starbucks for a stress-reducing reward of espresso and chocolate. It will all be ok.

The hours of day one will tick by, ever so slowly, but we’ve ultimately tackled this initial feat of going back to school.

Thankfully, it doesn’t take long for our new routine to set in.

After only a couple of days, I am reminded of how beneficial school is for my girl.

Parents of children with disabilities and special needs, we’ve got this.

Every year, our “Back to School” may look a little different; it may be a bit more challenging, but we get through it and push forward.

We have great big goals to achieve!

About Jodi Shenal

I'm a stay-at-home mom with two amazing children. My son is on the Autism spectrum and my daughter has a rare genetic disorder and multiple disabilities. I am passionate about advocating for my children, writing about our experiences, and raising awareness for other families in our shoes. Our family lives for the little things and we've learned to appreciate all the beauty that surrounds us

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