I’m fine


I’m fine. Or at least that’s what my photographs from the last eight weeks show.

Photo of a frog stuck in a plant pot

In reality I’m not fine. I’m processing a major event along with the rest of the world. It’s hard to admit that life is difficult when you know that it’s tough for everyone. Everyone has circumstances that make this situation difficult whether it’s isolating alone or as a working parent; losing a job or doing a job that’s particularly demanding. Everyone is doing what they can and hopefully communities are rising to the challenge of supporting each other just as ours has.

For us the shutters came down around our family of four a week earlier than lockdown. My instinct was to protect Quinns as I felt he was particularly vulnerable. I questioned myself constantly for several weeks before we finally received his shielding letter. The letter brought a certain amount of relief. Knowing that my instinct was right and that professionals agree is comforting. It doesn’t however bring back the support that we are missing.

We’ve gone from a team that couldn’t fit in the school’s biggest meeting room to just the three of us looking after all of Quinns’ needs while Dad works full time at a stressful job from home and Big Sister is home schooled.

There’s no longer the same NHS input as those who support us have been redeployed to cover other areas. On a practical level I have been unable to get the bigger size in Quinns’ support shoes from orthotics and have no hope for the next few months.

At the beginning of lockdown Dad had to fix the headrest on Quinns’ chair while receiving instructions on the phone from the rep. Later that day the rep was furloughed. For a while now a bit of the chair falls off periodically. We simply stick it back in.

Quinns’ three Nursery days a week provided not only education and socialisation for him but also space for me. He had the benefit of 1-1 support in the classroom while personal care was provided 2-1. Now it’s me providing it all and my much needed space is non-existent. My one saving grace is his classmate, Big Sister who also covers as my teaching assistant and occasionally additional support for personal care.

We chose to stop the carers who came into our home a couple of times a week to help us out. The risk to us and others was too great and we felt we could manage. However with grandparents all isolating in their own homes there’s absolutely no hope of respite. My only relief is when Dad manages to take holiday from work.

Much as I have wanted to I have not had the time or energy to write. I have however tried my best to keep up with developments. There have been times when I’ve desperately wanted to shout about frailty guidelines, DNR letters and serious changes to legislation. It rang so true when I read recently that it’s difficult to write when you are afraid.

‘We are all safe and well and making the most of our time together’ is my cover story for a level of exhaustion and anxiety that is off the chart.

Knowing that we are shielding at home till at least mid July, the only thing we can do is keep on going. We plan to make the most of the opportunity to ‘home school’ making use of the skills and resources available to us (it will come as no surprise that our home school has it’s own name and brand!)

I can’t take on all the roles of Quinns’ team but I can still be an advocate for value over vulnerability by sharing our positive stories.

And one last thing if you’re needing a break in lockdown and haven’t watched the film Crip Camp yet I’d highly recommend it!

Staying at home

Photo of Quinns and his Big Sister together on the sofa playing on the tablet Big Sister is holding.As everyone now comes to terms with being in lock down our family have been shielding for well over a week. Quinns’ respiratory issues make it too risky for him to be around others. My asthma means I too am classed as vulnerable and as his primary carer I can’t take any chances.

When Quinns was first diagnosed our world shrunk. There were barriers, both social and physical that closed in on us as many people and places became inaccessible to him. I’ve spent considerable time pushing back against those barriers trying to widen the scope for him (and others).

Now as the Covid-19 pandemic strikes that same thing has happened again.  Only this time it’s more extreme and everyone is in it together. You no longer have access to the people and places you had before and that is not easy.

While homeschooling Quinns & Big Sister last week I was finishing off an online course (I’ve given up attempting to do any work of my own!) about Inclusive Education. Now as the schools close and everyone stays home in exclusive bubbles, the entire situation is almost exactly the opposite of inclusion.

Our discussions about schooling for Quinns revolve around balancing his  learning with socialisation. We want Quinns to go to the same school as his friends because we rank peer relationships pretty highly. How many of our children are going to miss their friends because they are being home schooled and no longer able to participate in extracurricular activities?

I appreciate we all have considerable worries at the moment. We must pull together to get through it but during lock down I hope people will have a chance to reflect and learn from this experience what a lot of disabled people already know, the importance of access and socialisation.

We are very fortunate to be locked down in our ‘new’ house with amazing garden. It’s ideally set up for Quinns to access everything he needs including chats with family & friends online and of course he’s fully included in our little quartet. We plan to make the most of our time. Getting round to all the activities we never have time for normally all the while trying not to let the worry take over.

Stay at home and stay safe everyone.

Who cares?

Photo of Quinns sitting in his Squiggles pack watching tv beside his Big Sister who is sitting on a bean bag. They are facing away from the camera and both are wearing hoodies.

Who cares? We all care; I do, Dad does and Big Sister does. As parents and sibling of Quinns that is our role in Quinns life. That’s the same as any family except that it’s rarely thought of in that way. Quinns’ needs bring our caring positions to a whole other level. 

My caring role is fairly obvious. As he gets older it becomes more and more distinct from what I would do for my child anyway. At four years old you’d expect him to get himself dressed and feed himself (perhaps with a certain amount of persuasion, cajoling and frustration but dressed and fed all the same.) I have to do all that for Quinns just as I have done since the day he was born. Only now he’s a busy four year and we have a full family life. 

On top of that there’s appointments, equipment, meetings, paperwork etc plus the communication difficulties which often leave me completely in the dark about what Quinns’ needs. There’s little doubt that all this takes up a significant amount of my time.

But what about Big Sister? It’s harder to quantify her young carer role. She loves her brother like any Big Sister. She loves to read to him and play with him. She has household chores to do like any other eight year old. She’s also quick to point out the unjustness of having to do those chores when Quinns does not. ‘It’s not fair!’.

I depend on her a little more than perhaps I should. Together, when Dad’s travelling, we get the three of us out to school in the morning. As well as being the time keeper to make sure we’re not late she cleans Quinns’ teeth, brushes his hair and fastens the Bundlebean (cosy toes) to the Bug. She’s an extra pair of hands that I couldn’t do without. 

She has the patience of a saint. Quinns eats orally. Meal times are long and she has to wait till Quinns is finished before we can move on to the next activity. Transferring Quinns from one piece of equipment to another, making sure every single strap is fastened so he’s secure, takes time. It all takes time.

Our world revolves around Quinns. We had to move house to suit his needs and now we need house adaptations for Quinns. Days out and holidays are all about where we can go that will fit Quinns’ needs. Parties, even her own, are dictated by his needs. Not hers.

The appointments and people are all for him. She’s been around for all sorts of appointments with physios, OTs and equipment set ups. You can ask her to help with any chair, tray etc and she will know. As we start to welcome professional carers into the house she is a great source of help and support for them.

She understands Quinns. She makes the cheeky requests on his behalf ‘Quinns wants to watch TV’ or ‘Quinns wants a snack’. She keeps it real and us in check to make sure it’s all fair. As well as picking up his non verbal signals she instinctively knows how to model language on the eye gaze computer. She’s even helped train the staff at school and shown them how the eye gaze works.

She sings him to sleep when I just can’t do it anymore. She sits with him when he is poorly. She fetches the thermometer, draws up medicines and prepares his thickened water. She accepts that she must entertain herself while we look after him. 

All she wants to do is spend time with him and do the things that any other siblings do without a fuss and without a fight. She sees my tears and rage when it feels like the world excludes her brother. She now points out the lack of accessibility and is willing to challenge anyone who parks in a disabled parking space without a blue badge.

Her drawings, voice and images helped shape our fundraising campaign for accessible play equipment. Her passion and enthusiasm for raising awareness for accessible play equipment and Changing Place toilets (despite her eye rolling at yet another photo of a toilet) are difficult to ignore.

She loves her brother and is so proud to be his sister. She takes her caring role so much in her stride that it’s easy to forget that she has a heavier burden to bear than some. I couldn’t do it without her. She is a young carer. In fact she’s a super sibling!