Kerry Shippey, mum to George, has written about some of her experiences in lockdown:

Our trip to GOSH:

A number of routine clinic appointments scheduled for April had reverted to telephone consultation. Not great as we were already overdue by 6 months with previous cancellations & there was no way to virtually check George’s cardio function. We were also concerned about George’s significant decline in mobility.

Our local OT & Physio had been pulled into critical COVID-19 care so are no longer available for us, indefinitely! GOSH Physio asked us to visit as they were also very concerned. Our initial reaction was panic & ‘no way’!...A trip to London, coming out of our ‘shielding’ bubble, it’s too high risk, what PPE would they have, how many people would we come into contact with, how would we even get there. The train was our normal journey but that was a definite no!....

However, Marion at GOSH was fantastic. She gave us lots of reassurance, offered an ambulance to pick us up (we drove to London instead to reduce the risk further), advised where to meet her so she could minimise contact etc.

After shielding for so long George was petrified to leave the house in case he caught the deadly virus, so we did a couple of local quiet walks with him beforehand and talked through some social stories of what to expect & how the ‘outside world’ might look & feel different. Only one parent could go but we tried to turn it into an adventure & to spot all the things that looked different on our journey/day, like people wearing masks etc, huge company thank you screens for NHS & key workers etc. We even saw people sunbathing on the pavements outside their Victoria Villas in London. It eased the anxiety levels for us both!

When we arrived at GOSH, We put our masks & gloves on & like an OCD mother I anti-bac sprayed everything in sight including the wheels of his powerchair etc. Marion was in reception waiting for us & took us a back way so we didn’t have to use the main lift. She wore a mask & went to full PPE once we got into the physio room, which she kept on throughout.

Aside from Marion’s colleague & a security guard at the front of the hospital, we didn’t see or come close to anyone else. We had the whole physio room to ourselves & the beds were again anti-bac sprayed before George used them.

George felt claustrophobic with his mask on & didn’t like the feel of the gloves at all, so he took those off & we just made sure we thoroughly washed our hands afterwards. We came away with some further equipment to help maintain George’s mobility a little longer & they stretched his night splints for us as they had become too tight & the local facility was again closed.

We took some chocolate goodies for the GOSH team. They shared their stories of travelling to work on trains & what things had been like. They had all been tested for the virus & some of the GOSH Neuro team have also been pulled into COVID19 care. They do such a fantastic job & we were very grateful to be well looked after on our visit. 

Would we do it again? Yes! GOSH are worried that some people are declining/cancelling appointments when they really need to be seen. For us, we reduced the virus risk as much as we possibly could. We left our shielding ‘bubble’ to increase the chances and time that George has left on his feet, and that’s what is important to him. It’s a risk we felt was worth it. 

 

Homeschooling:

The initial few days of homeschooling excitement very quickly wore off!

The nations ‘Joe Wicks‘ did not work for us, the suggested school timetables were too rigid, splitting our time & electronic equipment between two children with very different special needs wasn’t working. Meltdowns with shouting and screaming were becoming more frequent. We had to quickly adapt as things felt very stressful!  

Joe Wicks was binned, (It didn’t work for many children with disabilities) & we built in our own family home exercise/stretch activity later in the day. We agreed what time learning would start each day. Sometimes it was 9.30, sometimes 10am. Sometimes we just scrapped the curriculum & had a reward day! We relaxed more & decided it really is ok, & that the most important thing to focus on is mental wellbeing & getting through this period together.

We’ve done lots of baking, planting seeds & watching them grow, board games, & talking about how we are all feeling, & the boys have been socialising with friends through online gaming! Our agreed aim was to do learning in the morning & relax & have fun in the afternoon. It varies between 1 1/2-2 1/2 hours with school work, but we consider as long as they are doing something with some maths & English in the mix it’s a positive, & we as parents can stay sane too!