Isaac is 13 years old and lives with his family in Cambridgeshire. He is autistic, has sensory processing disorder, dyspraxia, Elhers-Danlos syndrome (EDS), which affects the joints, macrocephaly, which is a condition where the head is abnormally large, severe anxiety disorder and obsessive compulsive disorder (OCD), which is mainly focused on germs and food. As Mum Hayley explains, “His needs are severe and complex and impact his day to day life.”

Daily life and challenges for Isaac

“Isaac has a very specific routine, particularly around food. If he feels food has not being cooked long enough or stored too long – even if it’s well within date – he’s unable to eat it. Any areas of the house where food is prepared or eaten has to be spotlessly clean or his anxiety will elevate to a point where he gets stomach ache and can be physically sick.”

He struggles to go places where there are a lot of people. This is because of his autism, but also due to his phobia about germs. 

Hayley tells us that for the majority of the Coronavirus lockdown, Isaac has been unable to leave the house. “He’s struggled to even go into the garden because of his fear of germs and catching the virus. Usually, we would travel to remote places where there are fewer people but even this has proved difficult. On the one occasion I convinced Isaac to leave the house for a walk, he was in a lot of pain with his legs.” Isaac’s EDS means that he struggles to walk far. Hayley explains that some days Isaac can walk, but others, he can be in an incredible amount of pain that he can’t make it more than a few hundred yards. “He had an anxiety attack as his legs were in pain, he became stressed as there were people around him and he really needed to get home because of his fear of germs.”

“This can be typical of any day out, but it has significantly increased over lockdown.” Hayley tells us that Isaac’s conditions make it very hard to go on family days out or even walks as a family, and can make life hard for his older sister, Alice. “She’s had to deal with much more than most siblings ever have to.”

Impact of Isaac’s condition

One of the main impacts of Isaac’s range of conditions is that they are complicated by each other. Hayley explains: “His autism means he wants to feel in control, yet as things become out of his control, his anxiety increases, this, in turn, increases his need to feel in control and then his OCD behaviours become more apparent. It’s like a vicious cycle as we try to deal with each condition separately, but also as a whole."

Isaac currently takes sertraline for his anxiety, and circadin to help him sleep.

Education and development

Hayley says that Isaac’s diagnoses came as a shock. “We realised he wasn’t developing in the same way his peers were. Initially we were told that his autism was high functioning, and that, with support, he could hopefully cope in a mainstream school. As Isaac got older and started school, his difficulties became much more apparent and it was obvious that he wasn’t able to cope in mainstream school.”

For almost two years, Hayley has battled to secure an Educational Health Care Plan (EHCP) and a place at a special school for Isaac. “On top of this, I was frequently called by school to collect Isaac as he wasn’t coping. This had a huge impact on my own physical and mental health and impacted Isaac’s siblings as well.”

“As Isaac got older, his anxiety increased and was reflected in his behaviour. He could become physically aggressive towards me, and occasionally his siblings. Three years ago, his anxiety was at a point that we were fighting to keep him out of a children’s mental health unit. We learnt very early on that Isaac needed a physical outlet for his emotions, although this proved difficult when his anxiety meant he couldn’t get out of the house.”

How we helped

Hayley first heard about Family Fund through a support group when Isaac was younger. Over the years, Family Fund have helped Isaac and his family several times.

“Our first award was for a tag-a-long trike. Due to his dyspraxia, he struggled to ride a bike so this helped us get out together. After a few years, we were awarded a Lay-Z Spa. This was incredibly helpful as Isaac is always more relaxed in water and finds it much easier to chat and communicate.  He can go it in whenever he wants and it calms him down if he’s anxious.” The spa also helps with Isaac’s sensory overload and his EDS. “It eases any aches or pains he has in his muscles and joints.”

The family have also received family break vouchers through Inspire. “We were able to go to Centreparcs, a place that without the grant, we wouldn’t have been able to afford.”

Isaac’s most recent grant has been for a bike.

How it’s made a difference

“The bike has made such an incredible difference to both Isaac and us as a family. Lockdown has meant Isaac has really struggled to go out of the house as he feels incredibly vulnerable. He needs to be able to move away from others if he feels he is too close or there are too many people.”

Isaac outgrew his last bike, but through the grant from Family Fund, he has been able to go out of the house with his family. “Since getting the new bike, he’s been out on bike rides with us a few times and has actually asked to go out rather than us having to try and convince him that it will be safe. He still struggles some days, but the bike has been a real game changer for us.”

Find out you can apply for a grant here: How to apply