Cerebra’s network of Regional Support Officers and Sleep Practitioners are there to give face-to face support and practical advice to families. Regional Officer Laura Murphy and Sleep Practitioner Claire Varey, who cover the Yorkshire area, were recently both able to help four year old Jaxon and his family.
Jaxon was born ten weeks prematurely and has a diagnosis of autistic spectrum disorder along with many other health problems stemming from his prematurity including asthma, grommets for hearing problems, eczema and allergies. He is also hypermobile and has microcephaly and dysmorphic facial features and is currently undergoing genetic testing. He also has seizures which are thought to be due to epilepsy.
Sleep was a particular problem for the family. Jaxon’s mum Steph explains “We attended a Cerebra sleep clinic led by Claire Varey as Jaxon has always had problems with sleeping – both settling to sleep and sleeping through the night. He spent his nights in our room on a camp bed next to our bed! Attending the clinic gave myself and his dad the confidence to try and get him in a routine and gave us hope it could be achieved. We started that very weekend.
We took on board the tips of how his bedroom should be and planned out a routine like we had done in the group exercise, and explained it to Jaxon. We also got our daughter Morgan on board so that they were both following the same routine. The bedtime box was our favourite idea – low stimulation activity before bed (Jaxon’s is colouring a picture). The first couple of nights were hard work, as we had imagined it could be, but we are now 3 weeks on and Jaxon is settled in his own room by 8pm and sleeping shortly after with only a couple of wake ups in the night. This has drastically improved Jaxon’s concentration levels for school and also we no longer wake up exhausted for work. We have also managed to halve Jaxon’s dose of melatonin down to just 2mg”.
At the Sleep Clinic the family also met Regional Officer Laura who was there to give an overview of Cerebra’s services. It was a great opportunity for Stephanie to find out about applying for a grant to help with the cost of a specialist car seat and heavy duty walking reigns. Laura was able to identify possible sources of funding as well help Stephanie complete the application forms.
Steph told us “Jaxon is an escapologist and gets out of his car seat and runs away from us in public places so we are trying to get some help to buy specialist equipment. If we manage to get this it will benefit us as a family as we can start going on long drives again and family holidays in the UK which we haven’t been able to do since Jaxon was a baby as the risk in the car is just too high. Laura has been so warm and friendly and put me at ease straight away as the grant forms are so complicated and I wouldn’t have had a clue where to start”.
Laura was also able to reassure Steph about Jaxon’s behaviour and gave her advice on how to handle people’s reactions to it when they’re out and about, suggesting some strategies that she could use.
Stephanie told us “the difference Clare and Laura’s advice has made to our family and to Jaxon too is incredible. I’d never heard of Cerebra before the sleep clinic and I can’t believe I hadn’t as it’s a fantastic charity. Thank you so much!”