William during COVID19

Just making a relatively short contribution to keep everyone in the picture. So Will turned 24 last month, levelled off at 8 stone 3 pounds and is 5 foot 6 inches tall, which by WHS standards is TALL!

Anyone to knows Will knows he’s a social animal, loves friends, music, lots of action and entertainment. So lockdown came as a bit of a shock to him, and still does. Will’s father (my ex husband) and I decided to share the care as of 19th March last year, so we could keep him in a bubble of safety. Everything in Will’s life stopped; no day care, no respite, no friends. In the early part of lockdown Will entertained his friends online by continuing his DJing, then Facebook made it really difficult to continue. So yet another avenue taken away from Will (and his friends).

I have worried about Will’s mental health terribly during this time, and he has had bouts of being quite stroppy at times, which I totally understand. This lockdown gets to us all. The reason we decided to keep him home was two-fold. Firstly his poor immune system as a young child, and secondly his tendency for seizures when poorly, but of course also his ongoing bowel issues which has many aspects and it potentially life threatening. During a six week period in Aug/Sept when things in the world were a little less fraught William did attend his day care and respite, but we had to make the decision to keep him home again for the sake of keeping him safe.

So how does Will pass his time during these long days? Fortunately he has a long list of friends from various walks of life, with whom he loves to chat on Zoom/Messenger/Whatsapp. He attaches his laptop to the TV and has 5 friends all on the screen together and he comes away needing a change of tee shirt as he gets so excited and sweaty. Will has a DJ set up at both homes and entertains us with his play lists, lights and I provide the party food! Just like all our young ones, Will loves his iPad, and we have recently acquired an electric trike for Will for when the snow goes to keep him fit. His legs used to tire on his old trike – I guess I shall need some running shoes to catch up! We have an abundance of art and craft which Will dips in and out of, but loses interest quite quickly. We take talks, and he loves his two new ‘pets’. They are in effect a voice/motion activated cat and dog. On Amazon for the elderly with dementia, but Will absolutely adores Maggie (cat) and Ruby (dog) – it means I get some peace while he’s feeling he has his ‘friends’ close by to ‘talk’ to.

I’m guessing we still have many more months to come, managing our very limited lives. I tried to educate my GP and local MP about WHS but it fell on deaf ears. So while friends with youngsters with Down Syndrome routinely had their jabs a couple of weeks ago, our WHS youngsters have to wait. Heyho. All I can say is, roll on when we can all gather together again at a WHS Conference and let our special people party! Miss you all everyone. Susan and William.