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

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.

Tired but happy

For every symbol I showed him Quinns indicated that I should put it on the ‘good’ side of the Talking Mat, a brilliant communication tool for digging deeper into someone’s feelings about a subject. Based on Quinns’ answers to my questions it was safe to report at his TAC (Team around the child) meeting that he is really happy with his school experience so far.

Photo of a black board with a picture of a school in the middle. There is a thumbs down symbol on the top left and thumbs up symbol on the top right. On the right there are 10 symbols each relating to school i.e. reading, numbers etc
Quinns’ Talking Mat with everything on the good side.

Despite everything that was going on last August Quinns took the start of primary one in his stride. Transition events that differed from previous years probably had more impact on the staff than on the children who didn’t know any different. Once his full risk assessment was complete, the accessible mud kitchen was in place in the outdoor classroom and I’d given the staff a quick guide to turning on the eye gaze computer they were all set. 

Walking to school that first day as soon as he saw the lollipop man he nearly burst out of his chair with excitement! I’m sure Quinns was as relieved as I was for him to have managed to start school. He has made brilliant bonds with his teacher and support for learning assistants who he already knew from having been at the school nursery. 

Over the school year he has built up such a rapport with his teacher. He knows she understands the subtleties of his communication and has no hesitation in indicating when he can’t be bothered working anymore. His looks towards the screen asking to watch Thomas the Tank Engine don’t go unnoticed. I don’t think she gives in to his requests that easily though as he’s usually tired out by the end of the day. 

I get a lot of brilliant photos showing what he’s been doing each day. I love seeing him smiling surrounded by his classmates and I’m amazed at how much and naturally they include him. They are so willing to learn his way of communicating. One of my favourite stories about his day was hearing how his friend held up yes/no cards for Quinns to choose between weird concoctions for a picnic they were planning together. 

5 year old girl on the left standing showing yes/no cards to Quinns, a 5 year old boy on the left sitting in his chair.
A friend showing Quinns his yes/no cards.

On his recent return to school I was asked if he could have pizza for lunch. At the start of the first term we decided he would have packed lunches. If I provided the food I knew he could eat it and so I could be sure he was eating enough. But when everyone else was having pizza that day he was keen to be the same as everyone else. He now gets to make the decision about whether he has packed lunch or school lunch each day.

As well as his weekly homework book he regularly comes home with crafts he’s made in class (I’ve noticed there are a lot of hats!) Most recently though it was bright side glasses, made as part of a discussion on how to look on the bright side of life. On the one side he is not happy to go to school when he is tired but on the other side seeing his friends makes up for it.

Time to grow

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.

 

 

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.

Swimming facilities

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

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.