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.
Would you be willing to parade in public in your swimming costume? I am discovering a level of body confidence that I never knew I had because I am no longer willing to cover up and pretend that what is being provided is ok. I am no longer willing to make it work but I do want to make swimming happen for Quinns. So far that’s involved walking through a busy public area in our local leisure centre dressed only in my swimming costume.
Scottish Swimming recently released a video to launch their inclusion campaign #SeeMyAbility. I totally agree with the message “Don’t separate, segregate or keep me apart…make inclusion, integration and togetherness our task”. I also fully agree with their tagline ‘Everyone can swim’ but from my experience of finding pools with suitable changing facilities for Quinns I’m not so sure that the practicalities have even been considered.
We are working up to a family visit to the home of Scottish Swimming (where there is currently a £20 million redevelopment underway). Why are we having to work up to it? The Changing Place, that we have been told is the provision for the sports centre, isn’t even in the same building as the swimming pool. In fact it’s not even in the sports centre building next door.
It is situated in an arts centre that is a 5 minute walk away from the pool building. The walk currently takes you past a building site and down a hill on a busy University campus.
Here’s hoping my new found body confidence in order to make swimming happen for Quinns will allow me to enjoy the feel of the breeze as I stride it out on my way to the pool!
Even with very little control of his body out of the water Quinns is extremely comfortable and happy in the water.
Quinns is not the only keen swimmer in our family. Big Sister is an aspiring olympic swimmer. Swimming, therefore, is an obvious choice of activity for the four of us to enjoy together. You would like to think it would be easy but it’s not.
One of the reasons we chose to live where we live is access to what we thought were really good swimming pools. However we now realise none of the pools close to us are ideal for Quinns. The nearest pool with everything he requires is 20 miles away.
Since swimming has benefits for people no matter their ability you would think the facilities would be more accessible.
Our local leisure pool has recently put in a Changing Place. That in itself is great but it’s not poolside! I’m not sure how that’s going to work once Quinns is bigger and needs hoisted but for now we can make it work with waterproof mats and towels in the Bug.
Before and after our swim we have to walk right through the public reception area of a busy leisure centre!
I’m not sure who is more uncomfortable when our little family troupe walk soaking wet through a public place but I know for a fact that it is inconvenient for the staff.
Quinns recently graduated from his Water Babies swim class with an underwater photoshoot.
When he was eight months old and as our concern grew for his development I started taking him to the class. The health benefits of swimming are well recognised and I felt sure that he would gain from the water. That same sentiment was echoed when we ended up in hydrotherapy pools as part of various groups. At times over the last few years we were getting changed for swimming up to three times a week.
What I hadn’t really considered when he started the class was how much Quinns would enjoy being in the water. The massive smile that he could barely contain every time he entered the water told me and everyone else around how much he loved it.
In the beginning taking him to his swimming class was easy. He was changed the same way all the other babies were changed and then carried to the pool. As the others advanced to toddling and finally walking we still had the same routine.
When he outgrew the baby changing table we looked for alternatives and negotiated the use of a therapy room. The adjustable height bench made it work for us even though I had to carry Quinns through a corridor that went from the building entrance to the changing room. Although we didn’t have far to go it wasn’t pleasant underfoot.
Despite the negotiation to have the room there were times when one was not available. Each time we refused to use the floor of the disabled toilet. One time however we made it work by changing him on a couch in the reception area. It was hardly dignified.
As he grew ever bigger it all became more of an effort. It was increasingly difficult to carry him the distance to the pool and tricky not having access to shower facilities in the therapy room. Eventually one day when we were turned away because all the therapy rooms were booked for treatments I realised I was tired of being the one who made it work.
Our options for alternative classes are distinctly limited because so few swimming pools have adequate facilities. However we have now managed to find a suitable class with a Changing Place style set up that will work longer term.
So while I may be tired of making it work in the Water Babies class, of course that smile together with the benefits of the water means that making swimming happen for Quinns will always be worthwhile.
I was recently on a course where speakers would present on various topics relating to inclusion.
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.’
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.
As World Toilet day comes around for another year I thought it might be useful to see what progress has been made with Changing Place toilets since my post last year.
Lots of you have pointed us in the direction of Changing Place toilets and we’ve tried out as many as possible. We found one in a play park right next to the accessible roundabout and there was a new one in our local swimming pool which allowed us to go swimming together as a family.
They’ve helped us enjoy family time at museums, art galleries and even at safari parks and festivals. On our travels we’ve discovered that there are really advanced ways to flush toilets but we’ve also found adjustable height benches with manual systems!
I was delighted to book a Mobiloo for a local fundraising event and loved seeing it parked right in the middle of my own community. Its presence raised a huge amount of awareness of the need for these specialised facilities. The fact that it was used a total of 11 times in the three hours it was there speaks volumes.
Sadly in the past year there has only been one new Changing Place toilet in the whole of our local authority area. I wish that number had been higher but hopefully discussions about new ones are happening right now. I know that some thought has gone into the possibility of a Mobiloo for the area.
£2 million of government funding has been awarded to 22 motorway service stations in England specifically for Changing Place toilets and details of which ones have now been released. For us that means when we travel, we will be able to stop at our favourite services and not just the one that happens to have the right facilities.
Thanks to the strength of the national campaign there has been some legislative change. On the first of December it will become a legal requirement in Scotland for large developments to have a Changing Places toilet to gain planning consent. This is a major step forward to ensuring #incLOOsion happens.
Finally, Tesco is leading the way for supermarkets with its pledge of 35 new Changing Place toilets in stores countrywide. I’m sure the campaign will continue until all supermarkets, train stations, shopping centres, airports etc all have a Changing Place toilet. Something as simple as a Changing Place toilet really does make our everyday lives, even the most mundane of tasks like the weekly shop, that little bit easier.