Spontaneous combustion

We were lucky enough to manage a week away during the summer holidays. The beautiful Schoolhouse at Fenwick in Northumberland, just a short car journey away from home, provided a brilliant base for our adventures with absolutely everything we needed. I planned our days based on the experiences of a couple of friends so we could relax and enjoy some time away.

Quinns smiles his biggest smile with a large aeroplane behind him on tarmac.

Although I am a bit of a planner anyway it does get a little frustrating not to be able to be a bit more spontaneous. Earlier in the holiday I discovered when trying to book tickets for an exhibition on a Saturday evening for the Sunday that I couldn’t get a carers ticket because they were only available to those phoning during working hours Monday to Friday. Another unnecessary obstruction on top of everything else for disabled people who need support.

Anyway when we were driving to our holiday I spotted a sign for the National Museum of Flight. A few people had mentioned it to me because of Quinns’ love of planes but I hadn’t done my research nor did I intend to while on holiday. The planning extended to let’s just go on the way home and see what we find. I booked the tickets including a carers ticket online the night before.

As you can imagine for a display that includes aeroplane hangars the site is large. There are disabled parking spaces at each of the buildings and wheelchairs for use by anyone who needs one. As well as large thankfully the site is also very flat and the pathways tarmac which made it easy to get from one building to another so once we were parked up we were ready to explore.

The grounds were full of planes for us to discover. Quinns was immediately very excited to see so many up close. Although we took him on a few flights when he was younger we haven’t quite managed to bring ourselves to again now he’s bigger.

Disappointment came before we even made it to the suggested start of the exhibitions. We couldn’t help but have a closer look at the first plane on route only to realise we could board to see the inside. I stayed with Quinns on the ground while everyone else disappeared up the steps. To be honest I’m not sure he was too bothered about the inside but it wasn’t a good feeling that he was excluded. 

At the desk we were given times when each of the planes would be open to explore. Of course I couldn’t help but ask if any were accessible to wheelchair users. A very confused man simply told me no. I was disappointed but not surprised given the difficulties wheelchair users have with flying as described in this recent Guardian article

Rather than miss out exploring the inside of Concorde with Dad and Big Sister I decided to take copious numbers of photographs to share with Quinns afterwards. Again he was probably more interested in the large screens showing videos of the red arrows in action or Concorde in flight but I couldn’t help wondering why there isn’t more effort to make at least one interior available for wheelchair users who might be interested?

After lunch we went to explore the Fantastic Flight hangar. I was seriously impressed. There were loads of interactive exhibits for children and adults to explore and learn about flight. Quinns was absolutely fascinated by the balloon that filled with air and rose up. Even better, it was operated by a button that he could reach and press himself! He also spent quite a lot of time trying out the controls for operating different parts of the plane. Although he had a good go at all the different levers his favourite was the one that switched the lights on. For someone who often has to sit passively at such places this was amazing!

He was also able to have a good go at the flight simulator but given that his favourite activity was letting the plane crash I think I might leave it a while before he starts flying lessons! 

So our little bit of spontaneity paid off on this occasion. The museum redeemed itself from the immediate disappointment of inaccessibility with interactive installations that Quinns could actually enjoy. However there are no excuses on a site that large not to have a Changing Places toilet which would have made our day even better! 

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!

Stay home save lives

Photo of Quinns sitting on Big Sister's knee on a picnic mat with apple tree in the background.

Life is a bit full on for everyone at the moment. Round the clock caring responsibilities without a break as well as home schooling is keeping us busy. We are shielding at home for the next 12 weeks but we are happy, healthy and making the most of our time together.

 

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.

Can you hear me?

I was recently on a course where speakers would present on various topics relating to inclusion. 

Pencil line illustration of a young boy shouting into a microphone.

At the start of one presentation a support person held the microphone to the speaker’s mouth. ‘Can you hear me?’ said the speaker. As we shook our heads the supporter adjusted the microphone. ‘Can you hear me?’ 

Again the answer was no and more adjustments made. ‘Can you hear me?’ This went on for several minutes until finally we could hear the speaker and I can assure you by the time the presentation began we were all listening. 

After that for the duration of the talk the supporter quietly held the microphone to the speakers mouth, only switching arms as required. His job simply to help amplify the speaker’s words.

Knowing how to support someone who is physically disabled can be really difficult. A really fine balance needs to be struck between supporting someone to do something and simply doing it for them. 

I recently helped Quinns make salt dough ornaments. They looked pretty good but my own experience working with dough and icing was obvious. I had taken over. I overstepped the mark of enabling and instead made them for him. I like to think that’s what any mother would do though… 

One evening we were sitting at the table. Quinns had his eye gaze computer in front of him. Big Sister was writing a letter. She finished and passed it to me. I read it to myself and told her how great it was before putting it down beside me. 

Quinns very slowly but carefully picked three words. ‘I. Want. See.’ 

Close up photo of the screen of Quinns' eye gaze computer showing the word and images for I want see in the speech box.

Of course, I had forgotten to show him the letter his sister had been working on. A great reminder that he’s so often passed over. We share things and show each other things all the time. His presence in the room isn’t enough to include him. He needs help to get in on the action either by someone moving him closer and / or helping him with the relevant piece of equipment but at the same time not overstepping the mark. 

Quinns will probably always need help. There are some amazing designs and technologies available that will enable him to do a whole lot but it’s really important that he also gets the right support person. The one who will quietly hold the microphone and allow Quinns’ voice to be heard.