Latest blog Teaching the teachers is ready to be read online here https://www.fireflyfriends.com/uk/blog/teaching-the-teachers/
If you have a child with any kind of SEN you’ll fully understand the delights of transitions – it doesn’t matter whether it's between classes or schools, a new carer or setting.
Any change in carers means it's time to teach the adults all those different things that they will need to know to keep your child safe and happy.
Care plans, seizure protocols, and medications are the easy bits because these are, in general at least, pretty standard.
However. When you have a child like the Dude who seemingly has a perverse determination in seeing how many new and unusual seizure types he can throw into the mix within the first few weeks (if not days) of being in a new setting, then things can get a bit interesting.
Ladies and gentlemen, this boy is a Pickle. A gorgeous, funny wonderful one granted; but a pickle nonetheless.
One of my personal favourite memories comes from nursery – when a lovely staff member was trying to describe the movements he was doing over the phone to me and was actually demonstrating his arm movements at the time.
On. The. Phone. It had been a very long time since they’d had a SN child in their care and they were anxious to make sure they got everything right.. after a giggle, we ascertained that he was fine and was just trying to roll over!
It is an inevitable fact of life that when new adults come into the Dudes life there will be a dramatic increase in the volume of emails/phone calls while everyone gets used to this unique boy of ours.
It is something I am immensely thankful for.
After all, if people don’t ask they won’t learn. And if they don’t learn what is/isn’t normal for him then they can’t keep him safe.
His neurologist once explained that while his seizure type may not change (generalised v’s focal for example), as he grew and developed new neuronal connections their appearance WOULD.
It still throws us at times when a seizure is but doesn’t ‘look’ like we’re used to.
And it's unsettling, if not actually terrifying anymore.
After 11 years, the seizures have (almost) lost their power to utterly terrify me every time but I know how scary it is seeing a child having a seizure, especially when you’re not used to it.
I will forever be thankful to those teachers, TA’s and carers who look after my child when I’m not there with him, and am thankful that they know they can and do ask about things they’re not sure of.
Because that’s how he stays safe, and how he’s able to enjoy the life he deserves.
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