Why I Don't Like 'Back to School' as a Mom of a Child With EDS

It’s August. Time to get ready for school. Yippee!

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

It’s August. People seem to be dreaming about fall — pumpkin spice is everywhere. Stores are full of brand new, shiny school supplies. Parents are looking for the latest trend in clothes to buy. Kids are excited about seeing their friends again and their extracurricular activities.

And I hate it. All of it.

For me, and those like me with a rare chronic illness, August and this time of year can be filled with stress and dread. My son has Elhers-Danlos syndrome, postural tachycardia syndrome, mast cell activation disorder and chronic pain syndrome. One of these is challenging on its own. Together, they are life changing.

There are before-school appointments to fit in. There are 504/IEP/ARD meetings to have at school. Can he physically handle his classes for this year? We have to walk the school to see how much walking it will take between classes so we can work with the school to schedule the classes for the best pattern to get the least amount walking. Are there multiple floors? Does he need an elevator key? Is the nurse prepared? Have I dropped off his meds and medical equipment? Does the attendance office know he will miss more days than most students? Can I get a second set of books? Can I get them digitally? Have the teachers been educated? Do they understand? Are they prepared? Do they understand his need to stay hydrated? Is his rolling book bag allowed? The questions go on and on.

 

Then I have to shop for supplies. While others grab the cute, colorful items, I’m comparing the weight of notebooks, the width of pencils and pens for the best grip, trying to find the least number of items for him to carry and still be compliant.

Now for clothes. I can’t shop for trendy. I must shop for jeans that are loose enough to be able to wear braces underneath. Shoes that will allow for ankle braces. Shirts that are soft enough not to agitate and dyes that won’t produce an allergic reaction.

And that’s all just stuff.

The real struggle is for my son. Is he mentally ready? Will he be made fun of again? Will he be able to control his anxiety? Will he have friends? Will he bullied again? Will he be strong enough to speak up for himself when the teachers go against his 504? Will he be able to make it all day? Will I get to him fast enough in a crisis?

It’s August, and I’m not looking forward to the beginning of school.

Thinkstock image by seb_ra