“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.
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.
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.
Top Comments
As a former school of the air governess, I would like to add that while home-schooled kids do miss out on some cool school-related stuff like lunch boxes and playing with friends, they also have opportunities other kids don't. Like finishing all your assigned school by lunch time so you can pursue your own interests, working at your own pace, one-to-one tuition, drinking not chocolate while you work, excursions and holidays during term-time when places aren't crowded, etc. I know distance education is not most people's first choice, but there is a bright side. The kids I taught and I loved it! Good luck and all the best. I hope you and your kids have a ton of fun this year!
It's pretty sad that you narrow the range of your children's experience because you're worried about what could happen. One crappy teacher does not negate the whole school experience of making friends and learning social skills.
I have loose joints, but I never let them get in my way. I dislocated my kneecap while rock climbing, but I continue to do fun activities because life is meant to be lived, not feared.
congratulations you dislocated your kneecap while rockclimbing. My child with EDS dislocated a hip rolling over in bed one night. and currently cannot keep her shoulder in the socket. She lives her life, within her capabilities. and with the knowledge that by not pushing her body further than she needs to she can do more, live longer and have more mobility longer.
She said she has tried several times so I think you can assume the substitute teacher was one example rather than just one incident. I think that dislocating your knee while rock climbing is very different to damaging your ankle simply by walking!
At what cost to her happiness and sense of fulfillment?
a huge cost actually, just today she said to me mum EDS has wrecked a lot of stuff in my life. But EDS is a part of her life, if we ignore that then it just will make things worse. Its horrible that she has a condition that does cost her some happiness and a sense of fulfilment, but that is the lot she has been dealt. No amount of ignoring that part of her in the persuit of 'happiness and sense of fulfillment' will change the fact that she does HAVE EDS and it DOES wreck some moments of her life.