You may have noticed the lack of posts from me again the past few weeks - but I was off fighting a better fight. Kids & teen related of course! 😊
We finally had the long awaited tribunal in order to try and get the support our daughter deserves to help her access school/learning.
I know we aren't alone in this fight - and although this was mostly surrounding anxiety in our case - so many of our hypermobile kids also suffer with anxiety and/or may be autistic as she is.
I will write a longer piece at some point soon, as the journey is a hard one, and ultimately our children are the ones suffering. We have all been through so much, I'd love to be able to pass on the information and advice we can now give to help others.
I'm pleased to tell you, that having practically taught myself SEND law, and keeping on, keeping on through the intimidation from the other side... We won. We actually won!
And some may feel we shouldn't be that surprised, as the stats are high, the percentage of parents that win at tribinal are in the high 80s. But our case was complex - as it often is with invisible illness.
Part of that does entail hypermobility - I've mentioned before that our girl has a complicated pain response - she rarely noticed pain until it's extreme. She certainly wouldn't show it, nor probably communicate it at school. So I'm sure you'd agree, this must be part of her documented needs, right? Well, no, as they never see it at school! They wanted to remove it.
I could honestly go on forever - a few people have even suggested I write a book. Maybe one day... But for now, I'll just carry on trying to spread the knowledge that I've gained over the past few years.
How many of you have had difficulty getting an EHCP? Or even getting them to agree to assess?
I'm pretty sure there are also a fair few of you home educating due to similar issues too.
My best advice to all of you is - YOU know your child best. Never lose sight of that. And, if you are fighting due to invisible illness, I'd highly recommend getting health professionals on your side (CAMHS/Consultant) as you will probably need them at tribunal.
Have a good week.
Lara - Social Media Volunteer
Published: 8th November, 2019