parents

When the first day at school is anything but normal.

“We have tried school, many times, and failed miserably each time. Our children simply are not safe there”.

It’s 8:15 am and I’m surfing Facebook. My friends are starting to post pictures of their kids. It’s the first day of school and so my social media feed is an ocean of tartan and polo shirts (bucket hat optional).

My youngest son is starting Year One and like all my friend’s children, this is his first day too. But he doesn’t have a new uniform. Or a new backpack or even a new lunchbox.

He doesn’t have these items second hand either. He doesn’t have these items at all.

More like this? First day of school. A beautiful, emotional story.

My son has to be schooled at home due to a medical condition. Just like his brother.

He has Autism and Ehlers Danlos Syndrome (a connective tissue disorder which affects mainly joints, but can also additionally affect any body system) and schools are simply not funded enough to be able to take care of my boys’ needs.

The closest to a uniform my kids will see this year.

 

We have tried school, many times, and failed miserably each time. Our children simply are not safe there.

One year, my eldest son hurt his ankle while walking with his class and substitute teacher. She had not been told of his condition, and even if she had, would not have understood it. So since there was no obvious sign of an accident, she tried to force him to get up off the ground and walk again by verbally threatening him.

And when that did not work (my son was in a lot of pain), she yanked him up by his arm, which could have quite possibly done long term damage to his shoulder joint.

He came home scared and confused, because he has Aspergers and did not understand why the teacher didn’t believe him

Thankfully, his classmates stood up for him, which made him feel a little bit better.

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More on starting school: Mia: “My baby started school today and this is why I didn’t cry.”

My boys and I were all diagnosed with Ehlers Danlos Syndrome in the same appointment. It took me a while to research the condition to the point I felt comfortable knowing what it was that we were dealing with. Even now, we still do not have a fully functioning medical team helping us.

Ehlers Danlos Syndrome is rare, and even when known, can be very misunderstood.   [Editor’s Note: According to Genetics Online “Ehlers-Danlos syndrome is a group of disorders that affect connective tissues, which are tissues that support the skin, bones, blood vessels, and other organs”.]

When medical professionals have trouble, it is no wonder that teachers also drop the ball. So my boys are at home with me today, where I know they are as safe as they can be. Waiting for their passwords and teacher information from the Brisbane School of Distance Education.

My youngest is missing out on his first day of school proper. He is missing out on putting on his school uniform, and shoving his head in his new backpack to see what it smells like, and wondering what is in his new lunchbox. He is missing out on having his photo taken with his uniform on, and a smile that so obviously says “I’m going to big school now”.

It’s only a few little things.

But isn’t that what life is all about? The collection of all those little moments?

My heart is with all those parents who might be feeling a twinge of jealousy or sadness this week.

May we all take solace in the fact that we are not alone, and not lose sight of the fact that for those of us who can’t send our kids to school, our children are at least much safer where they are. With us.