I have been keen to visit the play park at Lochore Meadows Country park since it opened in March this year and it did not disappoint! It had so much more than the usual basket swing and accessible roundabout. There was something for Quinns to explore in all parts of the park which meant he was able to keep up with his friends and play both with and alongside them.
After exploring the fully enclosed park which included going up and down the ramps of the two main pieces of climbing equipment he then went across the suspension bridge multiple times as his friends bounced along with him.
Rather than go for his usual high-backed swing (we weren’t sure the style of swing would work for him) we instead waited for our moment and took over the piece of equipment all the kids wanted to go on, the one with the biggest thrill. I’m not sure of the name of it, but it could be a flying chair swing or a carousel sky swing!
Five of them could sit on the individual seats and it spun them around and outwards. It’s the first time I’ve seen one with a high back seat. So with the help of the trusty Go-To seat Quinns got to experience a new sensation and be as adventurous as everyone else.
Of course, he tried out the wheelchair swing and the accessible roundabout. Apart from all that there was also at least one accessible trampoline, a rainbow tunnel, a double slide and multiple sensory boards plus things I may not have spotted in the busy-ness of the park.
It is the first time I’ve felt disappointed to leave a park with Quinns as I didn’t feel like we had explored everything it had to offer. With a café right next to the play park and a Changing Places toilet in the nearby education centre though I have no doubt we’ll be back at some point to play some more!
The first stage of planning adventures from our base at The Rings in Fife was working out the location of the facilities for days out. Each new day and every adventure during our week long holiday meant an opportunity to try out a different Changing Place toilet.
In St Andrews the new Changing Place toilet is right next to the beach and not far from the town centre so it was ideal for a spot of lunch followed by an afternoon on the sand with the help of a beach wheelchair.
It was great to have an opportunity to check out the new Changing Place at The Helix: Home of the Kelpies as it’s so close to home and I know there’s been a big campaign to get it there!
Lochore Meadows Country park is the accessible park of dreams with so much for Quinns to do we didn’t get it all done! The café next to the park and the Changing Place toilet in the nearby outdoor education centre makes it possible to stay all day.
We had a choice of two Changing Places in Dundee City Centre, at the Dundee Science Centre or at the V&A. Since we tried out the one in the V&A a couple of years back we decided to give the one in the Science Centre a go this time.
It’s disappointing that neither the Scottish Deer Centre nor the Falkirk Wheel had Changing Place toilet facilities when both attractions have ample space for them. Luckily the Deer Centre was just a short distance from our holiday accommodation, and we combined our Falkirk Wheel visit with a trip to the Kelpies so it all worked out for us but it could have been a very different story.
Today is Changing Places Awareness day. Another opportunity to speak about the Changing Places toilets that make our life with Quinns easier. They allow us to get out and about with him and make his life as exciting as possible.
This week I’ve been sharing posts from Changing Places UK about the numbers of Changing Place toilets across the UK. The numbers are shockingly low. There are only 17 in airports, 199 in parks and open spaces and museums, galleries and art centres have 99. Only 123 hospital and medical centres have one out of a total of 1148 and out of the thousands of pubs and restaurants there are 16!
We started raising awareness for these facilities in 2018. For the last 6 years I’ve taken a photo of Quinns and his Big Sister in every one of the facilities we’ve visited. They know the drill!
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It is usually with great excitement we try out a new one because each time we know that the world has opened another little bit for Quinns. Our recent visits have included Waverly Station in Edinburgh, Silverburn Shopping Centre in Glasgow and Tebay Services Northbound.
Only four out of the five hospitals across the UK where Quinns has appointments have one. Luckily, it’s one closer to home that doesn’t but luck shouldn’t really come into it when it comes to toilet facilities.
The journey to and from London for hospital appointments is now easier due to the recent investment in Changing Places in service stations. We have a choice of where to stop along the route.
When we’re not travelling, we have our favourite places to go simply because of the toilet. Quinns loves the cinema and swimming so Macrobert Arts Centre and The Peak are our go to local days out. Quinns was delighted to have his drama group’s short film premiere hosted at the Macrobert Arts Centre where his friends were able to be happy and comfortable.
Someone asked me recently whether there were any new Changing Places facilities in our local area. I was sad to say there have been no new ones since our campaigning began. In our entire local authority area, there are only 3 registered and open to the public (Macrobert Arts Centre, The Peak and Blair Drummond Safari Park). There are also ones in the Community hospital, local College and a resource centre bringing the total to 6.
This Changing Places Awareness Day my Wishlist for potential Changing Places facilities includes the Thistles Centre in Stirling, Stirling Castle, Stirling Train Station, the Wallace Monument and Bridge of Allan (which I’m hopeful is happening albeit very slowly).
What’s on your Changing Places wishlist? If you want to find out more about the campaign or find out what you can do to help you’ll find lots more information on the Changing Places UK website
Today is Rare Disease Awareness day which seems like an appropriate time to share a bit more about the journey we’ve been on with Quinns these last five months.
In September last year Quinns ended up in hospital experiencing a dystonic crisis. Dystonia or involuntary movements are common in Cerebral Palsy. He underwent a whole raft of tests in an attempt to establish the trigger for the crisis. The only way to control the movements, which were by this point causing him physical harm, was to heavily sedate him. With so many sedation drugs on board Quinns eventually needed help to breathe and was put on a ventilator.
The initial cause of the crisis was never established but in the process we discovered that his initial diagnosis was wrong. Rather than Cerebral Palsy, one of the most common childhood disabilities, Quinns actually has a very rare genetic neurodevelopmental condition called GNA01.
GNA01 was only discovered in 2013 and as such there are currently only about two to three hundred people with this particular genetic mutation in the world. It presents in one of two ways either as a movement disorder which looks very like cerebral palsy or as seizures. Sometimes people have both but in Quinns’ case it is simply the movement disorder.
It is obviously a shock to have an entirely new diagnosis after seven years. There’s a lot for us to get our heads around but what does it really change?
Cerebral palsy and the movement disorder caused by GNA01 are very similar. They both result in a disability requiring Quinns to use a wheelchair to get around and an eye gaze computer to communicate. He would have needed all the same equipment and support regardless of the name of the condition. The only thing that really changes is the narrative around his birth. His condition isn’t caused by brain damage but by a change in his genetic coding. There was absolutely nothing we or anyone else could have done when he was born to make his condition any different.
As in Quinns’ case the condition usually presents when a child has an extreme episode of dystonia or hyperkinetic movement which spirals out of control and leads to a long period in intensive care. This is known as a ‘Storm’. If we had known earlier that Quinns had GNA01 and that such a Storm was possible perhaps we could have been more prepared? But on reflection there is very little that I would have done differently for him in the years leading up to the Storm. His life was fun, social and fulfilling and we did everything possible to ensure that for his future.
Although cerebral palsy was the best explanation we were given for Quinns’ difficulties it never fully explained his condition. We now have a condition and a list of symptoms that describe Quinns’ difficulties with movement more exactly. Unfortunately we can’t rule out the possibility of future Storms but hopefully we will be better equipped to avoid them or at the very least deal with them when they arise. Our decisions moving forward can be based on knowing more about the condition we’re dealing with and hopefully more and more research will be carried out on this relatively new discovery.
Although we’ve yet to connect with them, Quinns is now part of a new small community of people with GNA01. There is a tribe of people who present almost exactly the same as him. One thing that struck me when I watched a video about some of the other children with GNA01 was how often their smiles are mentioned.
Quinns has been through a lot these last few months but he’s come out the other side the same smiley happy boy we all know and love. He attracts the attention of many passers by as he sits in his chair atop his hospital bed giggling away while he watches Thunderbirds for the 100th time. Big Sister is of course still his most favourite person.
I set up this blog a short while after Quinns was originally diagnosed with CP. The aim was to share our frustrations and struggles that we faced as a family simply because Quinns was a wheelchair user. Those frustrations and struggles remain the same. Accessibility and societal barriers are still a big problem for him. We still need access to Changing Places toilets to allow him to get out and about and accessible play parks are even more necessary now as he so deserves some fun after all he’s been through.
Hopefully once he gets out of hospital we’ll get back to sharing our life experiences again. In the meantime we want to raise awareness of GNA01 for the two hundred or so people living with the condition as part of the 300 million people living in the Rare Disease Community.
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.
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!
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.
With Covid restrictions and several bouts of illness this winter it’s been a while since Quinns has made it to a party. I’m tired from having recently had Covid but I’ve also been watching and reading a lot that’s made me want to speak out more about our experiences so here’s a little glimpse at the emotions that went into one birthday party at a trampoline park.
I’m grateful he’s got friends and has been been invited to the party. I’m thankful that restrictions have lifted and he’s well enough to go. I’m hopeful it’ll go well knowing I have friends ready for action.
I’m delighted at the squeals of excitement that ‘Quinns is here‘. I’m proud of Big Sister supporting her brother on the trampoline. She enjoyed the responsibility and loved chatting to all his friends. I’m relieved it’s not me up there scaring them all away!
I’m sad, angry and disappointed but accepting that I had to change him on a toilet floor. No-one should have to but it’s our reality without a Changing Place toilet. I’m exhilarated by freeing a red emergency cord and adorning it with a Euan’s Guide card.
I’m happy there’s a lift to get him to the party room. Quinns enjoyed the ride while I’m relieved we didn’t get stuck! I’m disappointed there’s not enough space or flexibility for his wheelchair to fit under the table allowing him a space at the table.
I’m happy to see his excited face when he’s given tomato ketchup with his meal. Even happier to see his full on excitement when the amazing birthday cake is brought out and we all sing happy birthday to his friend.
I love that he dipped into his party bag with another friend before proudly holding his red curly straw all the way home.
Thanks for a brilliant party!
“To boldly go where all others have gone before” #ThenBarbaraMetAlan
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.
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 fundinghas 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.
Quinns, trains & changing places 