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! 

A week away

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. 🤞🏻

A boring trip to the zoo

Quinns asked to go to the zoo to see the giraffes. Not a big ask for his seventh birthday but there were two big problems. As far as I was aware there is no Changing Places toilet at the zoo. Generally we like to go places where we are certain they have the facilities we need which is absolutely fine as a strategy. But if we don’t ever go to places that don’t have them there’s never any pressure to install them. So we decided to take the risk and make sure to ask about the facilities raising a little awareness while we were at it.

The second issue is our car is no longer good for travelling any distance. We’re currently awaiting delivery of our WAV (wheelchair accessible vehicle). Although we ordered it a couple of months ago we will be lucky if it arrives before the end of the year.

After researching public transport we planned our day to take the Citylink bus. Before paying for our four seats I was asked if we needed a wheelchair space. We did and I booked it for both directions at no extra cost. Simple.

So far so good but I will admit I was intrigued about how they would get Quinns’ wheelchair on a coach! I was also extremely nervous about whether the day would run smoothly or not because there were so many variables and given our past experiences it seemed like a fairly ambitious plan.

When the big day arrived, I told the bus driver I had booked the wheelchair space. We had to wait till everyone else boarded because she ‘would need to do all the shenanigans with the steps’. The shenanigans turned out to be a quick button press which turned the steps into a lift to take Quinns and his wheelchair into the coach where they were secured in the front seat.

Quinns being lowered to the ground in his wheelchair on a lift attached to a coach.

He had the best view out of the front of the bus the whole way to the zoo where we repeated the process of getting him off to an amazed group of onlookers.

Quinns smiling as he sits in his wheelchair at the front of the coach

On arrival at the zoo the first thing to do was find out about the facilities. After my usual conversation about how accessible toilets are not sufficient for our needs I found out there is a Changing Place toilet in the planning just not opened yet. We were offered the use of the medical room and given the number to call for access.

We had been before so were well aware of the giant hill the zoo is built on. I was impressed with the accessibility map we were given which pointed out the steps and showed us where the steepest slopes were allowing us to plan our route. We had the option to use the accessibility vehicle to get to the top of the hill but in our wisdom we chose to make our own way there. Something I think we regretted a little when it drove past us as we struggled up a steep incline.

However between the three of us we made it. We even managed to time our visit to the giraffes when they had been brought inside to eat so we had a perfect view. Some of the enclosures on the way up made it really difficult for Quinns to see but there were also plenty of lower or glass viewing points for him so he didn’t miss out on too much.

Quinns & Big Sister have a chat while looking through glass screens at the penguins in their enclosure

Once we had seen all the animals we had a quick lunch. Then all too soon, and without having a chance to try out the accessible roundabout in one of the play parks, it was time to head out to catch the coach home. Which was as uneventful as the first time.

Despite my concerns and readiness for some sort of fight or difficulty the day was pretty peaceful. Thankfully our risk with going somewhere without a Changing Place Toilet paid off on this occasion but it would have been so much easier to know it was available for us. Hopefully the plan for one will soon be a reality.

All in all the day was a success and Quinns went to bed that night a very tired but also very happy little boy.

Quinns and Big Sister pose smiling beside a #GiraffeAboutTown at the entrance to Edinburgh zoo

To boldy go…

Close up of Quinns' tired but happy face. He holds a red curly straw up in his right hand.

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

Thunderstruck

Learning to understand what an emerging AAC user is trying to communicate can be challenging but recently a couple of things have clicked into place for us.

An eye gaze computer grid with symbols and words for vehicles and the words 'remote, plane, helicopter, fire engine' in the speech bar.

After watching a trailer for Back to the Outback, an animated comedy adventure set in Australia, Quinns clearly told us he wanted to watch it by going to his animals board on the eye gaze and choosing the words ‘snake’, ‘spider’ and ‘koala bear’; three of the main characters from the film. Whenever we asked what he wanted to do he would repeat the same three animals followed by ‘remote’ until we finally had time to sit down and watch it. 

Although he loved it, giggling his way through the entire movie, the next time we asked him what he wanted to do he said ‘plane’, ‘helicopter’, ‘fire engine’ followed by ‘remote’. It took us a while but we eventually worked out that he was referring to an already favourite film of his, Planes: Fire and Rescue, a spin off from the classic Pixar film Cars based on fire planes and helicopters rather than cars and trucks.

This is a brilliant step in his ability to communicate what he wants to watch without us having to programme all the films that ever existed into the eye gaze! 

Quickly following this discovery, one evening at the dinner table Quinns interrupted our conversation with an obvious request for music. Dad usually puts some on when he sits down at the table but on this occasion he hadn’t. Quinns chose ‘song’ and ‘piano’ on the eye gaze before looking expectantly at Dad. A playlist was chosen on the basis of what Quinns had just been talking about ‘rain’, ‘clouds’, ‘weather’ (there may have been a film request in there but we didn’t manage to work it out if there was!) First up was Thunderstruck by AC/DC.

With music now in the background our dinner time conversation resumed until suddenly Quinns got VERY excited! His entire body was in such motion he could barely keep still enough to choose the words he wanted to say. He managed to choose “plane, helicopter, helicopter…” before looking around us all hoping that one of us would realise what he was saying. But we all just looked at each other knowing there was something but no idea what so he repeated ‘helicopter’ a couple more times before changing board to say ‘song’.

It still took us a while but suddenly it clicked and we realised the AC/DC song that was playing had been used in Quinns’ favourite film, Planes: Fire and Rescue or as he likes to call it ‘plane, helicopter, fire engine’.

So now we know Quinns can identify films and their songs and tell us about it just as long as we can guess from his clues. Anyone for a game of AAC charades?! 

Accessible Pod

We’ve had an amazing time staying in an accessible pod in Callander. Camping and even glamping would usually be a really difficult thing for us to do. The difficulties we face to go on holiday can sometimes outweigh the benefits but this pod was perfect for our family.

A normal size pod would have been way too much of a squeeze to enjoy the small living space experience. Here there was enough space to accommodate the four of us, plus all the equipment and still enable Quinns to move around in his wheelchair.

The most exciting part was having an entire fully equipped Changing Place style shower room right in our pod! As well as an adjustable height bench for changing Quinns and a shower he could use with his shower chair there was an adjustable height sink.

It may seem like a simple thing but since Quinns can’t get into our bathroom at home he never gets the opportunity to wash his hands in the sink. With this sink adjusted to the perfect height he was delighted to be able to spend time playing with the running water and of course splashing Big Sister!

Having an adjustable height bed was also a game changer. So often while we’re away I end up with a sore back trying to dress Quinns on a low down bed. Here since we had the bench in the shower room I didn’t even need to use the bed. The bed was simply Quinns’ bed adjusted to the right height to get him in and out safely; a place where he could happily watch the iPad and eventually sleep comfortably.

With all these facilities to keep us safe and comfortable we still had energy to explore Callander. We did a couple of lovely walks beside the river and followed the old train line towards Loch Lubnaig. We made it down (and back up) the steep hill to Bracklinn Falls even although we only had Quinns’ wheelchair and not his off road Delta buggy.

The one disappointing thing about Callander was the play park. The boardwalk took us easily round it all but even if we had attempted the gravel surfacing there was nothing for Quinns to play on anyway.

Thank you Callander Youth Project for having such a wonderful accessible pod and making us feel so welcome. We leave happy with bellies full of fish and chips and a shopping list of things we now know we can’t live without!

Eureka!

We have all been stuck at home much more than we would like in the past year. As we begin to think about getting out and about more I’ve been reflecting on a couple of our experiences pre-covid. On a trip to Halifax we had fun at Eureka! the national children’s museum and on a day out we went to an aquarium.

We all had a great experience visiting the aptly named Eureka! From the moment we entered through the accessible gate, held open for us by a member of staff, we felt welcome. There was no question even when Quinns turned up driving his newly loaned Wizzybug.

Four year old Quinns drives his 'Wizzybug' small electric wheelchair with his nine year old big sister chasing him from behind.
Big sister chases Quinns in his Wizzybug along the painted lines at Eureka!

Quinns could see and even take part in the majority of the exhibition because it was well laid out and interactive. All the floors were accessible via the lift and you know how much Quinns loves the whoosh of a lift!

The signs on the doors advertised the accessibility features of the museum; free admission for carers, Changing Places toilet facility and extra pair of hands service. Who doesn’t need a bit of help sometimes?

The Changing Place toilet meant we were able to spend the entire day enjoying all that was on offer. When we needed a break we spent some time outside. We ran along and round and round the painted lines on the ground. Had the weather been less kind there was a quiet room perfect for an indoor break.

It may sound like a pretty average uneventful museum visit but contrast it with our experience of visiting the aquarium on another day out. 

After paying for our tickets we were sent back out the front door, back the way we came. We trailed down a slope at the side of the building past a skip full of rubbish. Not exactly the welcome you would expect from a visitor attraction.

Once inside not all the tanks were at the right level for Quinns to actually see the fish. We quickly showed him as much as was possible both inside and out. Big Sister got a close up view of the meerkats being fed, while Quinns was only able to watch from afar as their enclosure was down a flight of stairs with no other access.

Photo of the back of Quinns head looking down some stairs at an animal enclosure
Quinns looks down the stairs at the meerkat enclosure below.

Once we had completed the first floor we had to go back out the way we came past the same rubbish filled skip and in through another door. Before re-entering the aquarium space we had to check with staff that we were allowed, expected even, to go through the door that had a sign saying ‘no admittance’. 

There was no need for us to visit the disabled toilet in the building adjacent. It wasn’t a Changing Place and so didn’t have the right facilities. We didn’t really feel like staying too long anyway.

As places begin to open up again I can only hope that they will choose the Eureka! sort of a welcome rather than the aquarium’s. I certainly know which place we would choose to visit again even although it’s a five hour drive away; Eureka!

Swings and roundabouts

From behind the camera my smile mirrors Quinns’. This was the very first time Quinns and Big Sister played together on the new accessible roundabout in our local park. 

Quinns and Big Sister enjoying the new accessible roundabout in our local park.

Back in October 2018 I posted a blog called Park life. I described my sadness at the lack of accessible play equipment and my dream of accessible roundabouts in every play park. 

Once the sadness of that day lifted the rage came. I realised Quinns would have very little chance of experiencing standard play equipment during his childhood. Only by travelling to play parks miles away would Quinns have the opportunity to play unless I took action. There was no time to waste.

Our local park was the best place to start. I got the Community Council on board with the idea first then we approached the Council. Anyone I spoke to about the idea of accessible play equipment was totally on board but there was no funding. Once the local community was involved the fundraising campaign absolutely rocketed and we soon made enough for a roundabout.

But it couldn’t stop there. One accessible roundabout doesn’t make an accessible playpark. As a family we sought out play parks to visit for research and awareness raising. By sharing the joy of Quinns’ and Big Sister’s park experiences we got everyone hooked on the story. There was no reason other than a lack of play equipment stopping Quinns having fun. We joined friends and had wonderful days out.

Five year old Quinns smiling while being pushed in a high backed swing by his ten year old big sister.
Quinns loving being pushed by Big Sister in the new high backed swing in our local park.

It all took an enormous amount of energy from us and from the many many others who helped us. We would hear about parks that had recently been renovated and make a point of visiting. It was frustrating to find that even although work had just been carried out in these parks there was still no equipment for Quinns to play on.

I often question why we had to go to so much effort to make it happen for our park while companies were spending money on inaccessible equipment for other parks. Although we had a lot of fun along the way it shouldn’t have been so much hard work to realise Quinns’ right to play.

After “The Big Push”, our final community fundraising event, we had raised enough for an accessible roundabout, high backed swing, tables and perhaps most importantly paths. Pathways would not only benefit wheelchairs users but so many others. The most common complaint about our park was the difficulties people had pushing children around it in buggies. 

Most of the work on our play park has recently been completed and it is amazing!! I confess I smiled so much on our first visit I forgot to take Quinns off the roundabout until he was pale with dizziness! There is so much joy to be had in our local park now that we can pop past for a quick spin anytime!

The biggest thank you to everyone near and far who supported, contributed and helped make this dream a reality for us and many others in our local area. We couldn’t have done it without you.

e-Sgoil

Zoom has become a big part of life in the past year. Video calls are no longer the medium used solely by the Open University. Everyone across all areas has had to adjust to it and as a result it’s made work, meetings and socialising more accessible. Big Sister now provides tech support for Granny’s online Guild meeting. 

10 year old girl sits facing the camera looking down at an open laptop screen. She is wearing headphones.
Big Sister taking part in an online class at e-Sgoil.

When we made the decision to remove Big Sister and Quinns temporarily from their local school in November due to Quinns’ shielding status Big Sister was enrolled in e-Sgoil. Based in the Western Isles it is a remote teaching facility which provided her with an online teacher, a timetable of online classes and a new set of friends.

It came recommended by other schools who used it when pupils were shielding or isolating, saving school teachers from having to create individual lesson plans while also teaching an almost full class. For me the great benefit was that I didn’t need to be very involved (unless I was pulled in to help with French pronunciation) and that left me more time to work with Quinns. 

Big Sister enjoyed the structure provided by the e-Sgoil online lessons. There were certain times each day she knew she had to be online and outside the core hours there was flexibility for her to work at her own pace on Masterclasses. She got very engaged with the work and built a great rapport with her teacher, often showing off work she’d done at home. The option to respond in text chat in online classes rather than having to speak up in a classroom setting meant she was more likely to be heard. 

She made new friends at e-Sgoil. Children from all over Scotland and for all sorts of reasons joined the class. She was part of a P5 – P7 class (and briefly a P2 – P7 class) so there was a wide range of abilities. There was a playground space where she could get to know the others in her class. Book, film and activity recommendations were bounced around the country while everyone was taking a break from set activities.

Even when everyone across Scotland moved to homeschool she stayed enrolled in e-Sgoil with the option to do additional work provided by her own school. Although she didn’t do very much of the work she did take the opportunity to join in on calls with her class. We knew she was capable of slotting back in to school when the time came.

She was sad when it was time to leave e-Sgoil and go back to school even though she was keen to see her school friends again. Given the choice now she would split her time between e-Sgoil and school. Contact with both sets of friends and being taught in two different ways may be the best of both worlds!

Inclusion at a (social) distance

When we decided to keep Quinns at home temporarily last year instead of going to school my big concern was that his classmates were going to forget him. It was strange to think that they would all be going about their normal day while Quinns was at home.

On the left sits an eye gaze computer and computer monitor sit on a table. Quinns, a 5 year old boy, sits in his chair on the right facing the screens.
Quinns listening to a story with his classmates.

I am passionate about inclusion. I want to make sure that Quinns is properly included in all parts of his life. He has the same rights as all children and that includes his right to an inclusive education.

During the pandemic when the advice for shielding children was not to attend school in person we made the very difficult decision to take Quinns and Big Sister out of school. We knew that schooling them both from home would help keep him safe but it didn’t make it any easier. 

We were fully supported by the school in our decision and I happily took on the role of teaching assistant helping Quinns do the work set by his teacher. When he completed tasks I would take photographs to record and share the work he had done. Being primary one level and play based it was a lot of fun. I may have got just a little carried away dressing up Lottie dolls for a weather based activity one day!

The best bits though were the interactions with his class. We had three video calls a week. For at least two of those calls Quinns’ face was beamed onto the big whiteboard at the front of the class. I don’t think I should have worried about him being forgotten! 

There was also an opportunity for smaller group work when he joined some of his friends to hear a story. There was much hilarity from reading the Dinky Donkey but also some really sweet moments when Quinns and his friends just looked at each other on their screens without needing to say a word.

I loved getting videos from individual children sharing the latest phonetic sound they had learned or showing Quinns the Christmas tree they had decorated during this festive term. It was a great opportunity for the children to practice being filmed and a lovely way for me to get to know the characters in his class.

We thoroughly enjoyed the Monday morning video session with the whole class hearing everyone’s news from the weekend. While we were stuck at home it was great to hear the children’s take on the highlights of their days off. Oh the stories I could tell but won’t! 

As the number of covid cases decreased we made the decision to send him back just in time to celebrate with his friends at the Christmas party. For the short while that Quinns was advised against being at school we are so lucky that he was included in his class even when he wasn’t in the room.