Diana shares her experiences of life during lockdown with her son, Raphael, who has Fragile X.
"So, I have posted in your newsletter a couple of times, as Raphael went into a depression at the age of 22, when his older brother got married. From that time, he came into my bed and I couldn’t get him out. It took me going to the other side of the world almost (to the US, pre-lockdown) for his father to get him used to sleeping alone. That was six years ago.
Now, he gets up in the morning, cooks me breakfast and makes me a cup of tea. Since he is usually up at 5.30, and I refuse to get out of bed till 7, these are both cold. But it’s the thought that counts. Remarkably, Rafi has been totally resilient about this weird period of lockdown. I can’t get him to go out and walk, although my excuse to get him out, is to go down to the post box, to send articles from the newspapers to his brother in Aldershot. The walk there and back takes 12 minutes, that’s barely enough to stave off what will probably be a weight gain over this period.
Fortunately Rafi has an iPad, and we have an Xbox. Rafi is often on both of these at the same time multi-tasking. Sometimes it is very noisy with a lot of shooting on Grand Theft Auto, but he also likes Bing. We also have the phone: so contact with friends, brother, occur daily.
I would like to say, however, that Rafi has surprised me with his resilience and good humour at this time. My message to other parents is that they should never give up on their Fragile X children, who will always have the capacity to surprise. Rafi is 27."
Thanks to Diana for sharing her story of life during lockdown. If you have any stories that you would like to share with us, please get in touch!