The family have been shielding at home since the beginning of lockdown. Mum, Jillian, describes some of the difficulties the family are facing and how they are adapting.
"Since lockdown began, none of our carers can visit Sam at home, so we are looking after him and his big sister – two very different children – for 24 hours a day, seven days a week. Normally they're both at school full time, and our carers come in one evening each week to let my husband and me have a break or spend uninterrupted time with our daughter.
My husband, while working from home, is still doing most of the cooking and spending time with the children between calls, but I spend my days spinning plates. Our daughter is a typical eight-year-old and wants a lot of interactive attention; Sam is non-verbal so often loses out but takes priority when his body needs immediate attention (such as nappy changes, mealtimes). It's easy to feel that I'm failing them both simultaneously.
Sam has no respiratory weakness, but if he is unwell for any reason this can trigger his epilepsy and he can have significant seizures that in the worst-case scenario could be life threatening, so we are self-isolating.
We're not leaving our garden more than a couple of times a week, for exercise; shopping gets delivered to the door and nobody comes in.
All Sam's specialist support is normally delivered through his school, so it has all stopped as well (apart from a very welcome weekly phone call from his teacher). We are the only people around to provide the physiotherapy, occupational therapy, music therapy and intensive sensory sessions that are usually part of his curriculum. Some alternative provision is available online, but direct expertise is irreplaceable. For example, we've already had to adjust his walking frame to account for a growth spurt and only had advice on the phone to guide us.
Health appointments (including the dentist) have been cancelled and our next scheduled respite stay at the children's hospice is looking unlikely too. It seems likely that the impacts will be felt long after the lockdown period is over.