A Strange Summer

Kerry Fender by Kerry Fender Additional Needs

Kerry Fender

Kerry Fender

Down’s Syndrome, my family and me – one mum’s account of family life with an extra chromosome.

I am not a mother who usually dreads the looming prospect of the long summer holidays. I have been fortunate enough to have been able to stay at home with my children, earning a little money by doing bits of freelance writing, so I’ve not had to worry about arranging and paying for childcare. I’ve also never found the company, chatter, and incessant questions of my children tiresome (I do, however, find many adults extremely tiresome).

This year, though, I feel very differently.

Normally I look forward to the long summer holidays as a time of relaxation and fun, a break from the up-at-six o’clock, to-and-fro school run routine.

This summer has a constricted, hemmed-in, breathless feel about it. I can feel my waistline expanding and my arteries hardening, and my brain becoming stiffer and foggier with every day that passes. Each and every day brings yet another battle to get Freddie to engage in any kind of meaningful or constructive activity at all, never mind actually do some kind of formal learning. I have to supervise him ever more closely as his behaviour get more mischievous and more provocative.

By the time I’ve done this and made sure that we have just enough clean clothes to wear and the house doesn’t become a health hazard, there’s another meal that needs cooking and more dishes to wash. With everyone working or studying at home, the amount of meals and snacks that I need to cater for has trebled. Since March I have not been able to get out for some exercise, or even to run errands. I have not been able to write, or even to think about writing. I feel old, exhausted and utterly stultified. I don’t feel like me.

Normally I look forward to the long summer holidays as a time of relaxation and fun, a break from the up-at-six o’clock, to-and-fro school run routine. This year we are simply doing whatever we can to make the time more bearable.

In a normal summer, while Daddy is at work Freddie and I might get out into the garden, play basketball, have lunch on a folding table under the conker tree, but since an recent incident in which I had to take my eye off him for a second and he clambered up a sturdy shrub to get over the fence into next door’s front garden, which has no gates and leads straight out onto the busy main road, I daren’t take him out there unless there are two of us with him.

As a safer alternative, we’ve spruced up the little enclosed yard behind the kitchen that we previously only used for hanging out washing. We’ve painted up an old algae-covered garden seat, added container plants, wind spinners and fairy lights, and hung mini gardening tools on the walls.

Freddie loves a beach, so when Daddy has his week off, we drive to the coast.

If finances permit, we might even go further afield and stay over for a couple of days. But we won’t be going to any beaches this year. Instead, the beach will come to us – Daddy has built a small sandpit in our pimped-up yard. It has a lid to keep cats and other creatures out, so it doubles as a handy wine table once Freddie is tucked up in bed. His room overlooks the yard so we just leave a top window open and we can hear him and be upstairs in a trice if he needs us.

The summer holidays would usually be a time for extra visits to see grandparents. Grandad, who has a form of dementia, really looks forward to Freddie (and I) visiting every Saturday. Lockdown has been difficult to explain to both of them.

We were hoping we would at least be able to go and sit with them in their garden this summer when the weather was fine, but, sadly, Grandad was taken ill two weeks ago, and the hospital decided that he would have to go into a nursing home for assessment before he could come home. We cannot visit him there at the moment, and Freddie will not be able to visit at all as he is a child. When Mum and I can eventually go, there will be a Perspex screen between us, and I don’t know how any of us will bear this.

The usual scramble to find items of school clothing in Freddie’s size has already been done online, as he needed a complete new uniform for High school, so this year I am going to get the Christmas shopping out of the way, right now, in case my husband loses his job a few months down the line in this disastrous economic climate.

And I am trying not to look forward to September, in case schools cannot fully reopen.

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