The ongoing health pandemic, and subsequent lockdown, is a challenging period for everyone. For families coping with cerebral palsy, the hardship of protecting their family while also managing continued therapies and complex care needs on their own brings its own set of added difficulties.
We talked to one family about how they were coping with cerebral palsy during lockdown.
What are the hardest aspects for your family during the lockdown?
“We have two children, our eldest suffered oxygen deprivation at birth and has dyskinetic cerebral palsy, learning difficulties and behavioural issues as a result. I am asthmatic and my self-employed husband has stopped working until it is safe to return in order to prevent the risk of exposing us to the coronavirus.
“We have limited space at home so our eight-year-old son doesn’t have access to his large sensory equipment at the moment. We made the decision to cancel his personal assistant in order to minimise the risk of exposure. We have not received any courtesy calls to check how we all are which is disappointing.
“We have been able to obtain past care costs while our birth injury claim is ongoing which has enabled us to clear the credit card debts built up over the years to cover the extensive costs of therapies and specialist equipment.
“We have also taken a 12-month mortgage holiday to take the pressure off until normality is restored and my husband can go back to work.”
Do you still receive the same level of external support to manage your son’s cerebral palsy?
“His school calls weekly during term time and his occupational and physio therapists have provided plenty of activities to keep him occupied but thankfully, having my husband at home is a great help and means that we have plenty to do to support both our children.
“Our family have been a real support delivering fresh groceries and medication – we couldn’t have coped without their help as we’re staying at home permanently at the moment – it’s far too risky otherwise.”
Are there any tips that you would like to share about how you are coping as a family?
“We have shared our son’s care needs between us to lighten the load and we are keeping our daughter busy with activities provided by her school to maintain structure and a sense of normality.
“We have purchased a trampoline to keep our daughter active and to make sure that she continues to get fresh air.
“We have an inflatable hot tub which we’ve been using which really helps our son, he sleeps particularly well after using it so we’re trying to use it as often as possible weather allowing.
“It has been a real help having my husband at home to help with lifting our son. Thankfully, we have a walker at home so our son has been able to use it to walk round the front garden to continue his therapy.
“We have also rearranged our living room and put down safety padding mats so our son can use his vestibular swing and we’ve continued to follow his Neater Eater programme. He has also been using a PC to play his cause and effect games.”
Have there been any positives during this period?
“We have enjoyed quality time as a family. Our son is happiest at home as he’s in a familiar environment and our daughter doesn’t want my husband to go back to work as she’s enjoying having him at home more!”
What are you looking forward to the most after lockdown?
“We are very much looking forward to seeing our extended family and having some respite when the lockdown period is over but keeping our family safe, and the children occupied and healthy, is a priority while it continues.”
Diane Rostron and her team of specialist medical and legal birth injury experts have a strong track record recently securing a £multi-million medical negligence settlement for a family in South Wales.
Our birth injury experts continue to work hard to pursue justice for families affected by medical negligence throughout the pandemic.
For a free confidential consultation please contact us here.