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This month parents caring for young children attending Special Educational Needs (SEN) schools and mainstream schools came together online and in-person at our studio base in Hastings. We discussed half-term activities, what works well for families supporting young children with complex support needs and what feels inclusive. Whilst Peppa Pig World and Drusilla’s were tipped off to be good experiences, queuing was a problem and some frustration was shared around feeling accepted by the wider-public. Mixed opinions were shared around the tools that help highlight invisible disabilities to the public. Sunflower lanyards and more recently car stickers, marking a shift in highlighting invisible disability.

Parents spoke of the constant battle in getting the right support for their children with requests for Education Health and Care Plans (EHCPs) being declined.

Parents shared their concerns around teachers and support staff not spotting when their child is masking or developing coping mechanisms in the school environment. Recently reported on in the news is the gender bias leaving tens of thousands of women in the UK undiagnosed and left without the support they need: “Why women may wait decades for an ADHD diagnosis

Some parents were concerned that their child’s behaviour was being unnecessarily punished with detentions and periods of exclusion. We discussed the different approaches to Positive Behaviour Support in schools. One parent spoke of school’s adopting a particular approach reinforced by the Bounce Back programme. Further information is detailed at the end of this round-up.

Resources and support

Amaze
Amaze is a charity that gives information, advice and support to families of children and young people with special educational needs and disabilities (SEND) in Brighton & Hove and Sussex.

IPSEA
IPSEA are a national organisation offering legal advice and have a helpline: https://www.ipsea.org.uk/call-in-helpline

Born at the Right Time
An organisation founded by parent, writer, trainer and activist Rachel Wright, following the publication of her book, The Skies I’m Under which charts her experience of becoming the parent of a child with complex disabilities. Check out Born at the Right Time’s parent workshops here.

Bounce Back programme
Whole school social and emotional learning curriculum program promoting sustainable mental health, wellbeing and resilience for students and teachers.

Book recommendation from the Support Collective – A Normal Family Life: Everyday adventures with our autistic son

Related events

Thinking of the Future session on Money Matters with Amaze, 23rd November from 10:00am.
Amaze’s Lizzie Batten, DLA and PIP manager, will be speaking about how to help your young person manage their money and how to support them to budget as they become adults. She will be helping you think about how to make small changes so they can be more aware of the money in their pocket and make good choices about spending.
For further information and to book your place here.

Making complaints, working together and not losing your s**t , 20th November 9.30-11am Rachel Wright

“Rachel is the founder of Born at the Right Time which aims to #bridgethegap between families of children with complex needs and the practitioners who support them. She’s the author of The Skies I’m Under, a qualified nurse and unqualified parent of three. She runs CPD certified training in communication and co-production, however, she still makes complaints and doesn’t always get it right. In this workshop she will explore:

  1. Is there way a good way to make complaints?
  2. Working with rather than against practitioners
  3. Looking after your own mental health at the same time (she finds this easier to talk about than do)”
    – Born at the Right Time

For further information and to book your place here.

Image: Lucy Jenion, 2020

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