Day 277

During the first lockdown – who knew we’d ever be using those words? – all the supports we had in place around Littl’un and our little family – therapies, school, sensory play, social worker – just fell away overnight.​

However, lockdown shone a light on those who stepped up and worked their socks off for other people. Of course there were the key workers in the NHS, supermarkets and more, and all the community volunteers. And for us there were the wonderful people at the local charity Grace House.​

Littl’un and I first came across Grace House in February half term this year when we went to a music therapy session. It was disastrous (Littl’un can’t cope with groups at all – even small ones – and he ran out shouting and hitting and looking for somewhere to hide), and it was also wonderful.

At the end of the session when all the other children had gone, Littl’un approached the therapist and asked her to play her violin for him. He danced and danced. I think some of the staff had tears in their eyes. I know I did. This photo, which I snapped on my phone that day, is one of my favourites.​

With us now on the list of their families, during lockdown Grace House has kept in touch by email several times a week. Always offering support and asking how they can help: Would Littl’un like to be involved in an art project?

Would I like to take part in a “Creative Cuppas” women’s craft group? A “sewing for sanity” project? Yoga via Zoom? And much much more. All carefully thought out to achieve the maximum benefit for families. Of course, for us the answer is almost always no. The music therapy was a huge hit But, as I said, Littl’un doesn’t do groups, and I can’t do anything during the day because I have Littl’un. I signed up for a couple of things, but then couldn’t take part for reasons that mostly involved me having him on my lap, or in a hug, or outside doing something together.​

A few weeks ago, Grace House asked if I fancied an evening “Slumber Session” via Zoom, with some other parent/carers. It sounded intriguing so I signed up and promptly put it out of my mind. Then last week the reminders started to come through. A box with tiny containers of pamper products arrived in the post, then a list of what I needed to have at hand – a bowl of hot water, a flannel, cotton wool pads. Then yesterday and today the final reminders. Grace House really understands that carers are totally preoccupied with their children, and need and want reminders for everything.​

Tonight I thought it wasn’t going to happen. Just as things were getting a bit frazzled, Big D stepped in and took over the bedtime routine, and told me to shut myself in the bedroom. And so I stepped into another world.​

I nearly had an accident with my bowl of hot water, but everything else went very smoothly.

The therapist opened our Zoom meeting, and there we were, seven women looking pretty frayed around the edges, in bedrooms, at kitchen tables, sitting in an armchair. I couldn’t help wondering, as I muted my sound for a moment so they couldn’t hear Littl’un shouting downstairs, what was going on in other rooms in their homes.​

The therapist was glamorous, practical and funny. She launched straight into it and we took our little pots and sprays, numbered from 1 to 9, and cleansed, toned, and moisturized. We were shown how to give ourselves a stress-relieving facial, how to massage our own necks, and how to relieve tension headaches with hot flannels (that was when my hot water nearly went over the laptop). Occasionally she forgot the realities of our lives. There were blank faces when she talked about setting make-up in place before going to work. And when she talked about false eyelashes, I saw a couple of wry smiles. But mostly it was superbly targeted. I learned how to save money by using wet cotton wool pads rather than dry ones, that if cream doesn’t touch your skin it’s not useful, so less is more. And how to scare the postie at Halloween with a sheet mask. There was a funny moment when the therapist had us all lying back with a face mask on and pads covering our eyes, ready to relax, and she went to put on her spa-style music by saying “Alexa, play ….” – and half of us had our Alexas reply over Zoom “Sorry, I don’t know that one.” I assumed the others were laughing or smiling too, but obviously I was horizontal and couldn’t see through the cotton wool.​

What a lovely hour and a half. I felt well and truly pampered. Thank you Grace House. The charity keeps looking for new ways to support families with children with very high needs during these difficult times. All power to its elbow. The world needs more beacons of hope like Grace House.