10 weeks in.....

20 July 2020

Our experience of shielding so far

It’s been 10 weeks since my son has left the house – with the exception of a trip to hospital with horrendous gut pain (although I’m pretty sure he just wanted to get out of the house as he was remarkably chirpier once in the car, and then after being fussed over by nurses).

We, and families like ours, hide in fear while others f*** the rules and continue to do what they like. To this day I can’t work out if people have no concept of how far 2m is, or if they don’t care. Clearly they failed their trundle wheel training in primary school. Oh for a cattle prod.

I miss my friends, I miss my class team and my pupils. I miss my family. I feel useless not being able to support friends who need it. My dad’s birthday is next week and it’s a sign of these horrific times that I’m relieved he passed away before this s***show, as at least we all had a chance to say goodbye, unlike so many over the last few months.

I can process what’s going on but I’m sure Nate thinks he’s been grounded. For someone with such profound learning difficulties he’s certainly been communicating how p***** off he is to be stuck in the house ( after initially being well impressed), his main form of amusement currently is a result of us yelling at his sister. Physically Nate doesn’t want to do much at the minute, and after the best of intentions for probably the first six weeks or so, I can’t say I blame him – my oomph to do these things has f***** off too. His bowels aren’t great either – ‘inactivity’ says his paediatrician. Thanks for that …

We made the decision to pull Nate and Thea from school before they officially closed, and began shielding as soon as we heard that vulnerable people should shield. Which is lucky as Nate’s ‘vulnerable’ text only came through on 7 May. In the first couple of weeks we received calls from Nate’s social worker and health care continued checking in on us, although interest seems to have fizzled out, with only the community nurses in frequent contact due to ongoing bowel issues.

With me working from home, and the way the school is communicating with parents I am in touch with school based professionals regularly for guidance and activities – at least they know how we are doing as a family. I have struggled this past 10 weeks with the most ridiculous physical symptoms of anxiety, all of which began to fade with the prospect of going back into work (and yes, I know that won’t make any sense to most people). Heaven knows how others are coping without support.

Ideally we would like Nate to go back to school before the summer holidays as long as the infection rate decreases and shielding is over. We feel confident in the arrangements the school has made to keep pupils safe. I know that many people won’t understand this decision but the prospect of five and a half months of no school, no therapy, no contact with his friends or the staff he loves, no routine, and no break for us or from us is harmful in itself. Take into account the constant changes of position, meds, cares, feed, and medical stuff we do everyday, on top of 17 months with no respite and things are really quite tough. We have managed (so far) to keep the overnight care we get (four nights) which is a risk in itself, however, Nate has one main carer who does not work anywhere else.

Every day of Nate’s almost 10 years has been about managing risk, if we weren’t prepared to take any risk he would have no quality of life at all. I think you would call our lives a continuous ‘dynamic risk assessment’ and so at the end of June, if shielding ends, and if the infection rate is down, we will see.

My husband’s work keeps him in constant video meetings and on calls from early morning till night. I’m not sure how he has kept going. Or kept talking. Although deciding to do a casual half marathon every weekend (as you do), and early dog walks must help. I should stop referring to him as a ‘marathon t*****’… Now if only I could block out the constant noise from him talking as he works. His work craic is s***. Mind you I’m not exactly queen of the patter at the minute either. Funnily enough we met at work many, many (many) years ago. I confess there would be no romance with  ‘Just need to dive on a call’ Michael. I’m not convinced we would even be friends, let alone downing shots of tequila rolling into work after an hour of sleep as we had both been out at parties and thought ah well they are still out too – and will suffer tomorrow, at least we can suffer together. Good old call centres putting up with hungover 20-somethings attempting to do their work. God I miss pubs. However I do forgive all of the above as Michael creates our weekly family quiz, complete with Tiktok challenges, which, quite frankly, is mint. It’s the highlight of the week.

The biggest help to my sanity and functionality is my daughter. Someone who p***** me off and amuses me in equal measures. She’s been a huge help. I don’t think many kids get pulled out of their Teams lessons to fetch meds, help with moving and handling, or just f*** it all off to ‘help’ with their brother on the trampoline. She’s never left the house other than an occasional dog walk or run with me or her dad.  This must be incredibly difficult. We are very fortunate to live at a time when we have the technology to be able to video call friends and family, but it’s not the same. Obviously she’s been loving doing Tiktoks with me

As I read the news this morning it’s all about easing lockdown, opening shops, being able to  meet with family in a bubble. I look on with jealousy as none of this will apply to us shielders. Advice for children with complex health needs was non-existent in the beginning of lockdown, and now patchy at best. The plans for us are seemingly non-existent. And I do feel like that. That we don’t exist. Teachers send families what they can, and support via phone and video calls but these kids are missing out, and their families are struggling. I have visions of shielding being extended and without support, families being broken by September. The government did eventually acknowledge the need to offer these kids and families something, and so allocated funds via the Family Fund – but this support is means-tested. Nice.

But all of this are simply grumbles compared to those families who haven’t been able to say goodbye to loved ones, or can’t grieve with friends and family. Or those families simply staying away to keep their relatives safe.

And then we see people doing whatever the f*** they like.

Towards the current end of shielding Nate turns 10. A huge accomplishment for someone who can be quite poorly at times. I think we are going to need to do some sort of drive by and hurl cake at people from a distance. That might be a good game – get the cake through the car window … As although restrictions will have been lifted for the majority, it looks like it still won’t apply to us.

Anyway. That’s us. 10 weeks in.

First published on the theaandnatesmam blog.

If you have any stories you would like to share with us about your experiences please get in touch covid-19@geneticalliance.org.uk.