24 Hour Postural Management:

Is essential for children with complex needs and/or limited mobility. It helps prevent secondary complications associated with prolonged destructive postures. When parents and carers understand their child’s needs, you can make a big difference. Being informed helps you:

  • Support your child’s growth – You’ll feel more confident helping them reach their full potential.

  • Work together with professionals – Whether it’s teachers, therapists, or doctors, knowing more means you can ask the right questions and make the best decisions.

  • Strengthen your bond – Understanding your child helps you connect with them in a more meaningful way.

  • Spot challenges early – The sooner you know what’s going on, the sooner you can help.

  • Keep things consistent – When everyone’s on the same page, life feels calmer and more predictable for your child.

Resources for Parents:

Whether for your own knowledge and learning, or to take with you/reference when speaking to professionals (health and education) involved in your child’s care, please see the resources below:

https://youtu.be/CeWMltvzgOg?si=f53dNugnqcL1fHt1: A short and engaging animation from Simple Stuff Works about one street, two homes and three ways to improve the life of a baby with Cerebral Palsy (or other physical disability).

https://www.mencap.org.uk/sites/default/files/201611/Postural%20Care%20booklet.pdf:

https://www.youtube.com/watch?v=ZV2_fUZNKMo (length: 31.15 mins) about the complexities of making sure seating is right for the child in all aspects of their day. Getting it wrong can have long term negative consequences. Seating is NOT always about achieving 90 degrees at the hips and 90 degrees at the knees (many children are unable to achieve this)!! Linking this back to the ICF framework is really important - the “F” words! (not those ones………) but Fun, Friends, Family, Fitness, Future, Function https://canchild.ca/research-in-practice/f-words-in-childhood-disability/

https://www.youtube.com/watch?v=nAd-qGXNsrc Lying and Sitting are inextricably linked! (length: 8.45 mins)

https://www.youtube.com/watch?v=6HFl1-sX3G8 Introduction to Night-time positioning (length: 53.38 mins)

https://www.youtube.com/watch?v=ktfgzu1aSEA&t=132s The impact of reduced joint ranges of movement (length: 10.11mins)

For more videos from Simple Stuff Works please see: https://www.youtube.com/channel/UCJKeD00uyRGKQFqcXEOClsA

Baby lying on a dark blue space-themed backdrop decorated with silver stars, a paper Earth, and a foam rocket with red and yellow, artificial flowers, dressed as an astronaut with a helmet and connected to the rocket by a tracheostomy, complex needs,
A boy in blue pajamas lying on a bed with an adjustable bed rail, before and after raising the bed rail, in a bedroom. Sleep system, postural management, complex needs
A young boy in a wheelchair shooting a basketball in a gymnasium, with other children in wheelchairs and others playing basketball visible in the background. accessible, inclusive

SEN Friendly Activities/Services

  • https://www.novasports.org.uk/ Nova Sports is a not-for-profit organisation who deliver high-quality, inclusive sport to people with disabilities in Bath, Bristol and Somerset.

  • https://www.ignitesportuk.com/ Ignite Sport UK's primary aim is to inspire people with sport, activity, and wellbeing, and to help create a sense of achievement for participants of all ages, backgrounds, and abilities. Based in Oxford and operating nationally, we provide a portfolio of services via our group of companies.

  • https://www.gympanzees.org/ Mission: To create fully inclusive spaces that improve health outcomes for disabled children and young people by offering regular exercise and therapeutic play while addressing the isolation faced by these children and their families. Goals; By 2026, we’ll open the UK’s first fully inclusive exercise and play facility— pioneering a new model of access and inclusion. Over time, we’ll build a nationwide network of centres, creating life-changing opportunities for disabled children, young people, and their families.

  • https://lendinglibrary.gympanzees.org/ A borrowing system for families, schools and organisations to borrow specialist exercise and sensory equipment.  

  • https://www.gympanzees.org/about-us/other-send-events The calendar on this page is a valuable resource for families in Bristol and surrounding areas seeking inclusive events and activities for children with special educational needs and or disabilities.

A young boy with light hair and blue eyes, wearing a denim shirt, suspenders, dark pants, and a bow tie, sitting on a vintage yellow sofa outdoors with trees in the background, smiling and reaching out with his arms. Down Syndrome

Developmental Delay/Prematurity:

You may have noticed — or been told by a professional — that your child has a motor delay or you may have a child who was born prematurely. This means they might be taking a little longer to reach certain physical milestones, like sitting, crawling, walking, or using their hands. It’s always best to seek professional advice to make sure you're doing the right things to support your child’s development and to rule out, or understand any underlying causes. But while you're waiting for an appointment, there are still some simple and gentle ways you can help at home.

Here are a few ideas to help your child and get them moving forward:

Young child lying on a pillow on the carpet, smiling, with medical tubes attached. Developmental Delay, complex needs

EHCP’s

Applying for an Education, Health and Care Plan (EHCP) for your child can be a daunting experience — especially if you’re not getting the support you need from your child’s school. The process can feel confusing, time-consuming, and emotionally exhausting.

But you're not alone.

There are organisations and services across the UK that can support you through every step of the EHCP journey — from understanding your rights to completing paperwork and attending meetings.

Support Services You Can Turn To

Here are some trusted services that can help:

SENDIASS (Special Educational Needs and Disabilities Information Advice and Support Services)
Every local authority has a SENDIASS team offering free, impartial advice to parents and carers navigating special educational needs.
Find your local SENDIASS: https://www.kids.org.uk/sendiass-home/

IPSEA (Independent Provider of Special Education Advice)
A national charity offering legal-based advice, EHCP support, and tribunal guidance. www.ipsea.org.uk If you are in WALES then this page has some useful links you can access: https://www.ipsea.org.uk/faqs/wales-signposting

Contact
A charity supporting families of children with disabilities. They provide advice, guides, and access to local support networks.
www.contact.org.uk

SOS!SEN
Specialist charity offering advice on EHCP applications, appeals, and navigating the SEN system.
www.sossen.org.uk

https://childlawadvice.org.uk/information-pages/special-educational-needs/ This page provides information on the duties of schools and Local Authorities to assess, identify and provide for a child’s SEN within school.

Local Parent Carer Forums
Run by parents for parents, these forums offer peer support, workshops, and local insights. You can often find them through your local council or SENDIASS team.

Remember: You are your child’s best advocate, and support is out there. With the right guidance, you can navigate the EHCP process and secure the help your child needs to thrive.

Advocacy Services

https://talking-sense.org/ a registered charity providing low cost advocacy, advice and support to parents of children with special educational needs & disabilities. 

https://www.sendadvocacy.com/ SEND Advocacy helps families of children and young people with special educational needs and disabilities (SEND) to secure the support they need to thrive, including EHCP appeals and SEND legal guidance for parents.

https://senaction.co.uk/our-services/ SEN Action offers a specialist advisory and advocacy service for parents with children with special educational needs (SEN) and for young people with SEN.