activity

The art of travel

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Quinns has absolutely loved taking part in Your Art World, an art project, at the National Gallery in Edinburgh over the last few months. As well as exploring the gallery he has used various techniques to explore artistic techniques and as a result produced some interesting artworks.

He has taken part in so many ways; cutting strips of gold foil, pressing down on paper for prints, holding onto stretchy material, choosing colours for ink and paint, rolling over paint in his wheelchair, decorating the walls etc. It is a challenge to find activities that Quinns can be fully involved in, and this has been a wonderful opportunity where he has been truly valued. Thanks to PAMIS for the opportunity and the lovely artists who have helped him explore the materials and techniques.

Quinns hand holds a blue brush. An adult's hand help guide him to press the brush into clay to make a stamp for printing.
Quinns smiles as his Big Sister pushes his wheelchair over a closed bag of red and yellow paint. There are strips of paper on the wall behind them.
Quinns has his back to the camera. His arm stretches out to stick down strips of gold foil.
Quinns smiles up at the camera. In front of him there is a painting made from dipping wool in paint and pressing it onto paper.

Edinburgh is an hour away. There are  always complex logistics involved with travelling far from home with Quinns. The main things to sort out are how to get there and how we care for him while we are away. I feel reasonably happy visiting the centre of Edinburgh because there are several Changing Places we can use; Waverley Station, Wetherspoons, St James Centre. There is also a facility in the Gallery itself which although it doesn’t quite make the specification for a full Changing Place is fine for us.

Quinns smiles in the centre of a narrow Changing Places facility with ceiling track hoist, adjustable height changing bed, toilet and screen.

We all know Quinns loves the train so travelling that way is a good option for a fun day out in central Edinburgh. For three out of the four sessions our train travel went smoothly. However, the day there was a bus replacement for a tiny fraction of the journey it went spectacularly wrong.

A normally 4-minute train journey took one hour! Even although we arrived in ample time for our train, as a result of inaccessible replacement buses and having to wait for a replacement taxi, we missed two trains and ended up in Edinburgh an hour later than planned. Sadly, it was the same on the return journey. What should have been a total of two hours travel there and back took us four hours!

I trusted the Scotrail app when it said the replacement buses and coaches were all accessible. Generally we have experienced good service on the trains and have also travelled by bus and coach with Quinns, so I had little reason to doubt it. We didn’t set out that day entirely naively so we made it to the art gallery on time but only because we had left a large enough margin of error.

It may have all worked out but we arrived home that day thoroughly exhausted and in shock at how badly the service had failed us. I have, of course, written to Scotrail detailing what happened in order to highlight the issues we faced. The response was an apology and assurances that the issues we flagged have been noted. The third party bus service have also been notified of their failures. All we can do now is hope that changes are made and next time we try we don’t receive such a disappointing service.

It is easy to highlight the good things that happen to Quinns without really sharing the difficulties. He has had some amazing opportunities recently which are good to share but none of them come without challenges. For every photo of Quinns smiling there is usually also a story to share about how he got to that point.

Quinns smiles from the wheelchair space on a train.
Quinns looks out from the gallery window at the trains coming out from Waverley Station in Edinburgh.

Short trip north

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After a long 18 month wait for our wheelchair accessible vehicle (WAV) we were finally able to take a longer trip away for a much needed break. It was wonderful to be able to visit Nairn for a few days to see family.

Quinns and his Big Sister smile standing on a large rainbow at the #TeamHamish splashpad in Nairn

We had a lot of fun flying our new kite on the beach, walking along the rows of boats in the harbour and seeing basking sharks swimming in the Moray Firth. The real highlight of our trip was visiting the rainbow bright SplashPad created by #TeamHamish. Quinns thoroughly enjoyed pressing the button before racing around trying to avoid the fountains of water!

Big Sister is pushing Quinns fast to avoid the streams of water at the rainbow Nairn SplashPad.
Quinns looks serious in his Bug on the beach holding a red kite handle and string.
A kite flies high above the clouds and some cottages by the beach.
Quinns and his Big Sister pose in front of the boats in Nairn harbour.
Quinns looks at his Big Sister as they spin on the accessible roundabout next to Nairn beach.

We’re already looking forward to going back and can’t wait to see the second phase of the #TeamHamish plans as they begin to take shape.

National Cinema Day

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We’ve not managed to get away this summer. Our long awaited WAV (wheelchair accessible vehicle) arrived the day before the schools went back. It has been a real struggle fitting Quinns and his Bug wheelchair in our car and has made days out very difficult if not impossible. The cinema has been our go to as are lucky to live within walking distance of the Macrobert Arts Centre, a creative hub which includes a cinema and a Changing Places toilet.

Quinns has always loved watching tv. It’s the one thing in life he doesn’t need help with. His interest in film began when he was really small. It started with films like Toy Story, Cars and then Planes: Fire and rescue, the film where his favourite song, Thunderstruck by AC/DC comes from. Last year he graduated to watching all the Star Wars films and quizzed everyone on his eye gaze with questions about which lightsaber they would rather own.

This year Marvel has taken over. He’s watched so many I’ve totally lost track. His knowledge on the subject is incredible. He loves to guess which Marvel character from clue cards. It’s a great way for him to show us and anyone who visits what he knows. 

Quinns has a serious face looking at his eye gaze computer which can be seen from the back. A mini screen shows pictures of Marvel characters and a card shows the character Hela.

We know he gets a lot out of watching tv programmes and films. Not only is it brilliant research for his budding film making career but we know he’s safe and happy watching at home. However unless he has persuaded one of us to join him it can be a fairly solitary activity. That is not ideal for our social butterfly so cinema is an obvious activity to get him out and about.

You would think it would be an easy and accessible activity. However a few years ago when I looked to take Quinns and Big Sister to our local major cinema I discovered it was not. The accessible seat was situated (caged in) right at the front of the cinema with only one carer seat next to it. 

My dilemma, do I sit next to Quinns and send Big Sister, then aged 9, off to sit on her own in the body of the cinema or leave the two of them together and find myself far from them both? Even if we go as a family or I take someone with us to sit with Big Sister, we’re split up. Quinns couldn’t go with a group of friends without being separated from them.

Cinema screen layout diagram showing 2 blue wheelchair spaces with one carer seat each right at the front of the cinema separate from all the other seats.

Having designated wheelchair spaces with a carer seat may comply with the regulations but I’m not sure how much input there has been from anyone with lived experience.

The Macrobert Arts Centre is different. In one screen the wheelchair space is on the back row with ample space beside for us all to sit together. In the other screen the entire front row has drop down seats allowing wheelchair users and their families to sit anywhere along the row. 

The downside is we have limited choice of what to watch and we have to wait patiently for films we want to see as there are only two screens compared to the eight of the major cinema. However this is far outweighed by the fact we have access to a Changing Places toilet. 

This is now a necessity for any trip out with Quinns. I was surprised to discover on Changing Places awareness day that only a small fraction of cinemas have one which seems like a missed opportunity.

Cinema really could be a truly accessible activity if only more of them had access to a Changing Places toilet and there was just a little more thought as to the placement of wheelchair spaces. It’s not too much to ask for our budding film star, is it?

Quinns and his Big Sister smile from the dimly lit back row of a cinema.

A week away

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We had a brilliant few days away thanks to the beautiful and very accessible Schoolhouse Fenwick. It had everything we needed as a base for our adventures. 😀

Fabulous friends gave us recommendations for what to do in Northumberland based on their own experiences so we had lots of fun without the fuss of inaccessibility!

First up was the Heatherslaw light railway which went from Heatherslaw to Etal where we explored the castle. The train had a couple of wheelchair accessible carriages and it was great to see them both being used. The castle, which is mainly ruin, wasn’t too bad for getting Quinns around in his wheelchair.

Quinns loved the train ride of course, although he learned quickly to cover his ears when the whistle blew!

Quinns is always asking to go swimming so when we heard Berwick Leisure pool had recently been refurbished we knew we had to try it out. Sure enough it has a brilliant Changing Places toilet with access from reception straight through to pool side so no need to drip through public areas while wet! 😀

It also has a Pool Pod Lift (https://tinyurl.com/4yk6x495 ) for accessing the pool. Although the submersible wheelchair didn’t have quite the right support we made it work (he was small enough for his head to be supported by the back of the chair.)

We had to rescue him on the way in as the chair kept going down until he was under the water so he sat on my knee on the way back up for safety.

Beach wheelchairs are a brilliant idea for inclusion!! It’s really difficult to move a wheelchair across sand so it’s great to see more and more beaches with these specifically designed wheelchairs.

We had a fabulous albeit very windy day on Beadnell Beach where Quinns could easily access the whole beach and sea where he was close to Big Sister who thinks she’s a fish! 😆

Our holiday was complete with a sunset boat trip around the Farne Islands. It was amazing getting so close to the wildlife particularly the seals.

Quinns absolutely loved being on the boat! We phoned ahead to check the best time as it needed to be high tide for level access.

Thanks to Serenity Boats for being so helpful, friendly and knowledgeable, it made a wonderful last night for us. 😀

No holiday story of ours is complete without a toilet tale. We managed the week despite a real lack of Changing Places toilets by careful planning and a camp bed in the back of the transit van we took to transport all Quinns’ equipment!

It was brilliant to find a Changing Places toilet in Tesco in Berwick. And one so impressively decorated! Tesco seem to be leading the way on providing these toilets but it would be great if other supermarkets followed suit. 🤞🏻

Time to grow

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Our garden has been both our haven and our classroom these last few months. When we first moved to this house the raised beds were absolutely heaving with produce thanks to the hard work of the previous owner. We loved picking the peas straight off the plant and finding out about kohlrabi.

I hoped it would all reappear the following summer but sadly in the busy-ness of life and the first year in a new house we didn’t have time to do what was needed. 

This year has been different. Restricted to only our house and garden we’ve had plenty of time for gardening. It’s been a great opportunity to teach Quinns and Big Sister (and me!) all about growing plants, composting and wildlife. It tied in well with Big sister’s  topic of biodiversity adding some practical experience to the written work set by her school.

Quinns of course has been completely involved in it all. He loves holding the trowel and helped plant lots of seeds. 

Photo of Quinns holding a green trowel moving soil from a plastic container into a plant pot guided by an adult hand

Our lockdown routine involved going out to the garden each evening to make sure everything was watered. Right from the start Quinns helped by holding the watering can. We soon invested in a hose and it really goes without saying that he now loves holding the hose to water the plants (and yes Big Sister does occasionally get wet!)

Photo of Quinns holding the hose to water fruit bushes supported from behind by Dad

Our evening strolls unearthed an army of snails that crawl around in the dampness. Sadly for them we have taken to picking them up and putting them back in the compost heap along with our food scraps from the kitchen. Usually Quinns impressively screws his face up when he feels new textures but to my amazement he actually seemed to enjoy the experience of having a snail on his hand!

It must be a love / hate relationship though as a naughty one ate its way through all his sunflower seedlings while leaving Big Sister’s alone. In good home school style we replaced his with the science experiment seedlings we’d planted in a glass jar. Putting up the snail defences of eggs shells and cloches quickly became another part of our evening routine.

I’m glad to report that despite a rocky start the new sunflowers are flourishing and while they may not be as tall and strong as Big Sister’s they continue to grow and develop at their own pace.

Photo of two pots each holding sunflowers which have grown to different heights

I am so grateful to have had this time together and this space to grow.

 

 

Swimming facilities

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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.

Close up photo of Quinns eye gaze with the words 'They went to the swimming I want to go to the swimming'

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! 

Caution Wet floor

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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. 

Photo of a sign saying 'Caution Wet Floor' outside a Changing Place Toilet

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.

Swimming the dream

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Quinns recently graduated from his Water Babies swim class with an underwater photoshoot. 

Photo of Quinns swimming underwater smiling at the camera

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.