Nicola Hunt

Sending strong but low-demand vibes to all the neurodiverse families out there for whom Christmas poses its own unique set of challenges… Let the countdown back to normal structured days begin!

@DeborahAlsina @VersusArthritis Hope you are feeling much better very soon Deborah x

I've been forced to stop for a few days thx to a nasty norovirus type bug. I've slept a lot & watched some awful TV - and enjoyed it so I know I've been ill 🤣 Despite my absence the world has not stopped turning and @VersusArthritis is fine. Good to remember. #selfcare

The journey home was full of pleading to play in an orchestra (in a green jumpsuit). To those who made today happen: you’ve opened a door into a new universe of possibilities for a kid whose disabilities often lock her out. Your skill and passion touches lives; thank you🥰

Today was just joyous. The girls could express themselves however they needed to, including physically or asking endless questions. Highlights were the violin of course (“how does it go so high?!”), the percussion section (obvs) and the tuba player’s mute (“will he drop it?!”)…

Today’s relaxed prom was truly incredible, huge thanks to all @RoyalAlbertHall @RSNO @NickyBenedetti @tSondergard A first for my teenage daughter and her friend… watching their eyes light up and jaws drop as they experienced each new sound and sight made me cry proper tears...

@DeborahAlsina My autistic hypermobile 13yo prefers “neurodiversity” so that is what we use in this house! 💞

BTW As a side note am I the only person who hates the term neurodivergence? I also loathe autism spectrum disorder. It all feels so negative. My autistic, hypermobile daughter is pretty awesome actually. 🙂

"This study is further proof of the link between neurodivergence & physical health issues, demonstrating a direct relationship between hypermobility & increased pain & dysautonomia" Another example of why joined up, personalised care important. bsms.ac.uk/about/news/202…

@Claire_R123 Oh Claire this is gorgeous - huge congrats! 💖😘

@justinroe @royalmarsdenNHS @RM_CancerRehab @Imperialpeople @ImperialNHS @ImperialSandC @ImperialBRC @RCSLT Huge congratulations Justin - so very deserved. Hope you had a lovely day!

@PookyH IPSEA and SOSSEN websites and webinars / training sessions are really good starting points for navigating the process and requirements.

EHCP Does anyone have any good advice/guidance for parents looking to generate supporting evidence for EHCP process, please?

School attendance is such a simple drum to beat. Get them to school and all will be well, goes to rhetoric. They can't succeed otherwise, we're told. Behind that drum there are a million stories. Here are some of them 1/

A really excellent article. Would only add that supporting and reducing all other demands on our autistic young people puts significant stress on the shoulders of their families and carers too…. So make sure to take care of yourselves too 💞

@autismmumbomo @nb87120292 @GreatOrmondSt I think @CreativeEdu and @PookyH may have some relevant ARFID resources? Sounds like a tough time, hope the specialist appointment goes well.

My 10 year old son who is Autistic is being referred to an eating disorder specialist and out dietician thinks he may have ARFID which is a rare eating disorder. Does anyone have any experience with this? #arfid #eatingdisorder @GreatOrmondSt

@Claire_R123 Fab news Claire - huge congrats!!! Xx

@DrBalsamAhmad Yes sadly - it is always such a fight, and such an unfair one in which everything feels weighted against the most vulnerable. I would highly recommend a phone call to @sos_sen ‘s helpline to support you in navigating any appeal / legal process.

Mums of children with #SEND Do you feel at times defeated? That you &your child are treated like scrounges by the system? That you are so tired & alone? Today is one! I could weep losing an appeal I spent weekends & nights putting together & compiling evidence. Another unmet need

Thank you again to everyone who replied. You can find the document here named "Worrying About War" phoenixgrouphq.com/tools #edutwitter #resources . Please be aware that this document will be followed up next week with a larger group to support & ensure more robust.

@Claire_R123 Massive congrats Claire. You will be absolutely amazing, and change lives for the better… the kiddos are lucky to have you 💗

@YvonneOrmston Looking fabulous - sending loads of love and strength 😘

@DeborahAlsina It really does. Sending strength and love to you all xx

Day 2 off & I'm preparing for battle with my local SEND team. Age 17, daughters EHCP finally approved late but now no movement towards finalising. Impact: she's dropped 1 Alevel already & is desperately lonely/isolated. I could scream. So close yet so far. The SEND system sucks.

Wishing you all a happy 2022.