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You know what Donatella will say - and I agree - you NEED the EHCP and don’t forget it goes on until they are 25! I’m incensed on your behalf that with all your daughters needs it’s been refused! Is the aim that all kids just get by - or that they achieve the best they possibly can with the input they need for their own specific needs.? Contact IPSEA for advice - they are brilliant - you have to be patient to book a consultation but they spend half an hour giving very tailored advice (you send all your info by email first so they don’t spend time having to gather information) and then they follow it up with any documentation that will help. I really feel for you too with all you have on your plate - it seems never ending - is there anyone else who can help even if only occasionally? Or occasional paid care? Also please prioritise your own self care - I found when things were at their worst I got tremendous support from a helpline counsellor. Also your daughter may benefit from specialist support groups / activities which her diagnosis / conditions / EHCP might make available to her. Don’t forget DLA and carers allowance if you don’t already have them - again that brings lots of extras such as the cinema card and free / reduced entry to some places. Good luck - Donatella will be along soon I’m sure!

Thanks for replying, Safia, it can feel like an echo chamber on here these days…

I was a bit afraid that the advice would be to press on; I have had 13 years of fighting for every meagre scrap of support for my little family and I am battle weary.

Apparently, according to my LA, attending a selective grammar school is Willy Wonka’s golden ticket to a glittering future and career. Oh, and a happy life, too. 🙄

Just to give a flavour of how hard life is at school for my DD, who continues to achieve academically: she works on a specially-adapted laptop, due to her severe visual impairment, but a teacher sent home a negative behaviour comment on Friday because my DD ‘forgot’ her exercise book, which she wanted to collect in for assessment. Only my DD doesn’t work in exercise books, as per. So, the teacher emailed me to insist that my DD present to her first thing on Monday morning with the work she’s done on her laptop printed out and glued in her exercise book. Now I’ve written that down I’m incensed again that the expectation is that my disabled DD should actually have to work harder than her sighted peers in order to access the national curriculum. I replied with the world’s longest and politest f*ck off message ever. But, goodness, the toll all of this takes!

You know what I’m going to say. Take those b’s to tribunal. The great majority win. We never got that far because my LA conceded once they knew we had a (very well known) solicitor involved. If you don’t know of him, I’d recommend Michael Charles of Sinclairs. You can follow him on Facebook. He’s fantastic.

Getting my two statemented was worth it even if my LA are now trying to play fast and loose with new legislation and doing their best to wriggle out of supporting kids. Our child Commissioner (Wales) is on the case.

It’s draining. Exhausting. Frustrating. And makes me so bloody cross. But do not let them get away with it. That’s what they’re counting on. Parents giving up because they can’t continue the never ending fighting. Find a support group who can help - I volunteer with a local charity which supports parents through the nightmare of assessment, diagnosis, education etc and provides free training for parents.

Have a look at Sunshine Support. They’re very good - particularly with ASD/PDA. Which my daughter is.

And, yes, as an older parent I get the whole sandwich thing. Mum is in her 80s, mil away with the fairies and my husband had stage 4 cancer - not terminal, but not curable either.

Look after you - gird your loins, practice some self care but don’t let the buggers get away with it xx

And PS - I sent you a walrus ❤️

I absolutely get where you are coming from and the unfairness of it all - we were lucky enough to get an EHCP (statement) the first time but when my daughter was out of college at 18 because of her mental health needs as she’d been the victim of a very serious crime they failed to transfer her statement onto an EHCP and we had to start again from scratch - that’s where IPSEA came in - and she’s had home tutoring since then - only 2hrs per day but enough - just finished as she’s just turned 26. But the fight is never ending into adulthood too - so that’s where the self care and counselling support for yourself and practical solutions for the other things you have to deal with - even just a bit to take the edge off things - come in

Thanks so much Donatella and Safia, you’re right, I’ll fight on. I’ve been in a fug of inert grief since my dad died but I suddenly seem to have regained something of my fighting spirit, apparently prompted by Friday’s email from my DD1’s biology teacher.

Donatella, please can you give me an idea of how much your solicitor cost? My/our ideal is to get my DD into a specialist school for the blind (only two in the country) to help her fulfil her potential- and also keep us together as a family.

Donatella, I finally get the walrus reference!!!! I actually thought that was a really insulting icon. Truly, how on earth is that angry-looking thing meant to be a symbol of support?