William is six years old and lives with mum Lynsey, dad and brothers’ George and Matthew in Country Durham. William is severely autistic, has hypermobility and sensory processing disorder. His eldest brother George, who is eight years old, has hydrocephalus – a build-up of fluid in the brain, autism, sensory processing disorder and a rare genetic condition that affects his growth and bone structure. Matthew, who is seven years old, has the same rare genetic condition as George. He too, is autistic.

Daily life for the family

Lynsey explains that routine is a must for her boys. “We have always had a strict routine at home which is essential and we use visual aids to do so. They are all on medication for sleep and George and Matthew take growth hormone injections daily.” Lynsey further explains that, “we are not able to go out much – even before something like the coronavirus – because of several issues the boys have.”

Challenges for the family

One of the family’s main challenges is the lack of support they receive. “I have support from my partner but that’s it. There are financial issues and of course the challenge of having three boys with autism at completely different levels.” Lynsey tells us that the current coronavirus situation has meant that “trying to help them with home-schooling is very hard.”

Impact on education and health

The impact of William and his brothers’ conditions are wide-ranging. “We usually have several hospital appointments to go to on a weekly basis.”

“William’s developmental age is around one and a half years old. George is around four and a half years old and Matthew’s development age is currently on track with his age group – he is very intelligent but struggles a lot with emotions and social situations.”

Matthew is currently in Year 2 at a mainstream school with a special educational needs (SEN) support plan. For William and George, their schooling is a little different. “William was held back a year in mainstream nursery and was kept there for a few months until we could get his Educational Health Care Plan (EHCP) so he could attend a SEN school. We managed to sort it out by November 2019, but now he is being home-schooled because of coronavirus.”

Lynsey tells us that George was also held back a year. “Technically he should be in Year 4 but he’s in Year 3 of the same mainstream school as Matthew. However, I have fought for three years to try and get George his EHCP. In January 2020 it was finally awarded after I appealed the decision and took it to my local MP. I basically told my Local Authority I would fight them the whole way – he was really struggling at school.” George is due to start the same SEN school as William in September 2020.

Impact on the family

Lynsey and her partner have had to give up work to become full time carers for the boys. “We did this around five years ago as the appointments alone meant a huge strain on our family life and finances."

Every day is hard, to be honest, but we love our children and wouldn’t have them any other way. It’s who they are and what makes them amazing.

How we helped

Lynsey first heard about Family Fund through her health visitor. She has applied since 2016. “Over the past four years George was awarded an iPad as he struggles to hold a pen, so he finds learning on a device easier. William was also awarded an iPad as he is non-verbal and uses the apps on it to help him tell us what he needs.”

The family have also been awarded a contribution towards a new bed and sensory items through Learning SPACE. Most recently, William was awarded a grant for a trampoline. “It means we can continue to do his rebound therapy at home whilst the schools are closed.” Rebound therapy uses trampolines for therapeutic exercise.

How it’s made a difference

“Family Fund have been amazing for my family. The items we have been awarded have helped my children so much and will continue to do so. We are extremely grateful for all the help we have had from Family Fund and my children would be lost without this support as it’s all the support we have ever received.”

Find out more: How to apply.