Lockdown life has been kind to us...
Parents appreciateate more time spent with son AJ
A Paisley ambulance worker has told how family life was turned upside down as they cared for their son n with cerebral palsy during g lockdown.
Seven- year- old Ashton ‘ AJ’ J’ McPhee, who was born 23 weeks s premature, lives with quadriplegic c cerebral palsy and global al development delay.
With today being World Cerebral al Palsy Day, Ashton’s Mum Kerry – who herself is a frontline emergency y service worker – has spoken of how w life changed dramatically when the e UK went into its initial coronavirus s lockdown in March.
The pandemic has affected d billions of people worldwide, but for 37-year-old Kerry, it made an already challenging life all ll the more difficult.
Both Kerry and her partner r are frontline emergency workers for the Scottish Ambulance Service and
Police Scotland respectively.
They have carers visit their r home three times a week to o assist with Ashton’s daily care. e.
In order to keep Ashton on safe, both Kerry and Sam were ere unable to attend work for six months – the nature of their eir jobs meant that there was far too much risk involved.
The couple also took the decision to stop Ashton’s carers arers attending during lockdown, own, as due to his premature birth, Ashton also has a history ory of severe chronic lung disease. ase.
This, combined with th his cerebral palsy, meant that at when lockdown started, he was s in the shielding category – something mething which meant that all of a sudden, the family were at home together; a stark contrast to normality when, they are at times, passing ships as Kerry describes.
Kerry said: “It’s been really important for us to try and remain upbeat and positive during a really uncertain time. There were, and still are, a lot of negative media reports which can have a huge impact on your mental wellbeing.
“We try and find something positive every day, no matter how small.
“Two huge positives for us right from the start were having time to stay at home and spending lots of quality time together, which along with fantastic support from our employers, meant that it was nice not to have to worry about work and enjoy a slower pace of life.
“Ashton needs routine, it stops him becoming overwhelmed with
change. chang e . “So, “So we quickly had to adapt Ashton’s daily routine in order for him to adjust to our new way of living. We had to find a balance that structured his days but was stimulating enough that he didn’t become bored while being at home most of the time.”
Ashton uses a bespoke Jenx Multistander, a three- in- one standing frame supplied by Sheffield-based postural support specialist Jiraffe, in order to enjoy many of his daily activities. The support frame has been an invaluable piece of equipment during lockdown, according to Kerry.
She said: “Standing is a very important part of his daily physiotherapy and provides multiple health benefits for Ashton. His Jenx Multistander has played an important part in allowing Ashton to enjoy his daily activities and play.
“Another barrier that Ashton had to ove overcome was spending time with his h friends virtually on Zoom. At first, firs Ashton was very uneasy about abou looking at his friends on a screen scr – he didn’t understand why his friends were on the TV. So, it i took a few sessions before he r realised it wasn’t a bad thing – just ju different.”
In I addition to other activities, Ashton As and his family took part pa in regular virtual music classes, c with the Paisley seven-year-old s able to stand tall t in his Multistander while playing p his favourite musical instruments. instrum
Above Abov all else, however, the most important thing for Ashton, Kerry and their family during lockdown has been the need to look after themselves, and each other – something which has become all the more important now that the family find themselves back in a local lockdown as the winter months approach.
“Be gentle on yourself,” said Kerry. “Lockdown is challenging for everyone but especially for families and parents caring for someone with additional or complex needs – even more so when normal support resources are reduced or stopped completely.
“It’s ok to admit that you’re struggling, you’re only human and everyone has their coping limits. If you’re overwhelmed and not coping, it’s really important to reach out and ask for support. Speak to your child’s social worker, teachers or health care professionals.”