London Transport

Quinns and his Big Sister wait for the tube train to stop on the platform. The wheelchair symbol is on the closest door.

We’ve spent a bit of time in London over the years; internships as students, visits when Quinns was a baby in his buggy and more recently while he was in hospital there for two months. We felt relatively at ease navigating our way around by train, underground and bus. Our most recent visit for a hospital appointment was the first time we’ve attempted it with Quinns in his wheelchair. We learned some very valuable lessons.

There were no issues with our first two tube stations as they both had ‘Step free access from street to train’ which meant we could easily get Quinns’ wheelchair on and off the train but also that we could enter and exit the stations. We began learning to navigate the complex lift system that took us between all the different levels. Although we’ve never noticed it before there was ample signage to help.

A sign showing the Lift Guide in a London Tube station with lifts marked A to F.

We should have spent more time getting to know which stations had step free access as we reached one station where although we managed to get off the train easily enough there was no way to exit the station. Frustratingly the nearest accessible stop to where we wanted to go was two stops along the route in either direction. 

After having to go two stops further than our destination we changed to bus travel to get back. Although the first bus had no problem letting us on, the driver did tell us off for all having used the wheelchair ramp. He explained to Dad that ‘ we could have broken the ramp’.

We learned our lesson for the second bus. So while I stayed with Quinns and requested the ramp, Dad and Big Sister got on the front of the bus and paid. However, that bus driver decided that Quinns was only in a buggy therefore did not deploy the wheelchair ramp leaving Quinns and me on the pavement in the rain as he drove off with Dad and Big Sister inside! 

We met up soggy and annoyed at the next bus stop after Dad had given the bus driver a piece of his mind. On the third attempt we all made it onto the bus but only after Dad had persuaded this driver that Quinns was in a support buggy which should be treated as a wheelchair.

We finally reached London’s King Cross Train station but having had no idea how long it would take to cross London we left booking train tickets till the last minute. We arrived 20 minutes earlier than the departure time of our train only to get a lecture about not having booked assistance because the ramp is the responsibility of station staff not train staff.

Regardless of who put the ramp out we found ourselves in the First Class carriage of the train having all been upgraded due to the position of the wheelchair space. We very gratefully received all the snacks and drinks that were on offer nearly four hours after deciding to leave London.

Learning new systems and finding out the best ways to travel as a wheelchair user is one thing but never knowing whether you’ll be left in the rain by the bus or pampered in First Class is utterly exhausting and frustrating. I’m very glad of our little team as we navigated a barrier filled (both physical and societal) transport system together.

Quinns smiles aboard a train. The sign behind him reads Welcome Board/ Wheelchair space.

Short trip north

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!

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

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.

Speech Bubble drama

Quinns has been enjoying online drama classes with Speech Bubble drama for a couple of years now. Over the last school term he was supported to produce a short film at the class and in June we attended the premiere of his latest film, Quinns is a Starfighter Pilot. 

Quinns sits in his Gravity armchair smiling up a the camera. His red t-shirt has the Speech Bubble drama logo on it. A framed film poster with the title Quinns is a starfighter pilot leans against the chair.

From Quinns’ suggestions for what he wanted in his film we then worked on the story. Once complete Big Sister drew out a storyboard. We then programmed it into the eye gaze so that Quinns could explain the sequence of events.

After enjoying the results of last year’s film, Quinns, trains, automobiles…and rockets? We went all out this year on the production value with the addition of make up, costumes and special effects.  We had fun filming both at home and on location. It was a brilliant distraction after Quinns had been so poorly. 

The premiere was a fabulous celebration of the work produced by all the participants of the classes. Like last year’s, the films were all shown on the big screen for the creators, stars and family members before awards were given out for each film. This year there was the addition of a panel which allowed the participants in the classes to answer questions about their films.

We knew the questions in advance so after asking Quinns to answer we were able to work out more substantial responses to say at the event. He had an opportunity to practice before the event. On the day he was delighted to tell everyone about his problems with the wings falling off the Space Bug when we were filming and how he was inspired to make his film by Star Wars and the Millenium Falcon. I was so proud of how keen he was to use his eye gaze to answer in front of such a large audience.

He seemed to really enjoy being in the limelight and I think you’ll agree he makes a brilliant leading actor. You can enjoy watching both Quinns’ films on the Speech Bubble drama YouTube Channel along with a range of films from other participants.

Quinns is a Starfighter Pilot 

Quinns, trains, automobiles…and rockets?

Riverside Transport Museum

Since it’s a bit tricky getting out and about at the moment we save big trips for special occasions. Our latest day out took us to the Riverside transport Museum in Glasgow. It was possible to spend the entire day there because it had a Changing Places toilet. 

Quinns loved seeing the huge selection of vehicles. He pointed out the plane on the ceiling and watched the boats going around for a good long while. A highlight was the lifts that took him to the platforms to see the insides of the trains up close. I’m not entirely sure what he preferred; seeing inside the trains or just being in the lift! 

Unfortunately when we tried to access the Tall Ship we were told the lift was out of order. We could have got Quinns onto the upper deck but given the rain we decided to give it a miss. There was plenty inside the museum to see, including a few new rooms we hadn’t seen before.

All in all it was a great day out!

Quinns, trains and…Changing Places

Now that Quinns’ diagnosis has changed it’s a bit awkward writing a blog with cerebral palsy in the name. I don’t really want to change it and risk losing the readers and followers who support me but I’ve finally decided to rename it ‘Quinns, trains & changing places’ which allows me to keep the qtandcp. I’ve learned through this journey that it is places that need to change for inclusion to succeed so the purpose of the blog will remain the same. I’m sure there will still be plenty of cute photographs of Quinns and his Big Sister.

As well as the change of diagnosis over the last 5 years of writing we’ve seen some massive changes in our lives. We’ve stayed at home a lot and we’ve travelled a little. We’ve enjoyed simple pleasures and taken on big adventures

We had to move house and then make adaptations to the new house. In between we raised awareness of the need to change play parks and raised the money to make our local play park more inclusive with paths and accessible play equipment.

Quinns finished nursery and started school. He has been teaching the teachers for three years now about everything from eye gaze technology to nasogastric feeding and we’ve experienced various versions of schooling; home, online and hospital.

Throughout it all and a big incentive for the change of blog name has been Changing Places toilets. These facilities have become even more essential to us over the last few years. We struggle to go anywhere that doesn’t have access to one these days. We have visited many that have been newly installed but there still aren’t nearly enough to make it easy for us to get Quinns out and about.

This Changing Places awareness day we support the campaign for all healthcare settings, cinemas and theatres to have Changing Places. I also want to raise awareness of the #RiseForSport petition aiming for Changing Places in all sports venues. I hope throughout the next five years I will be able to share photos of Quinns and his Big Sister outside many, many more.

So the name change not only covers Quinns’ change of diagnosis and everything we’ve been through in the last five years but also one of my favourite topics, Changing Place toilets! 

Dumyat Delta Adventures

I’ve dreamed of getting Quinns up Dumyat for quite a few years now. Our local hill is well trodden by anyone and everyone. Quinns’ friends started their climbing attempts in nursery or early primary school. 

Six children with their backs to the camera including Quinns in his Delta buggy look out over Stirling. In the distance you can see the Wallace Monument. It is very small.

A friend and I started scouting the possibility for Quinns while he was still in nursery. We wanted him to experience the great outdoors, the change of perspective and the clarity that comes with being so high up looking out over the land.

We are very lucky to have been gifted a buggy style wheelchair, Delta Delichon, which lets us get off road with Quinns. Over the last few years we’ve taken him on various walks in attempts to get fit and to feel comfortable with the Delta. Our experiences have included flat tyres on the coldest of days and upset ankles following the rough terrain of the Darn Walk on a sunny day when we got carried away.

All thoughts of climbing Dumyat were put on hold while my ankles recovered and as busy lives took hold. It took a major health incident and a good friend permanently returning to Australia to give us the push we needed to actually do it.

All the plans we had previously made didn’t seem so relevant now. We definitely weren’t as fit as we intended. We didn’t have the team of people we needed. We had none of the extra equipment we thought necessary.

There were only three weeks between the date we decided to go for it to when we actually climbed. These days I am far more aware of Quinns’ vulnerability so I notified Mountain Rescue about our plans. They were realistic but positive about our attempt deferring to my mother’s instinct about what was possible.

Packing for the adventure I needed Darth Feeder (Quinns’ feeding pump) as we would be walking across a feed time. I also needed hand sanitiser, test strips, syringes for flushes and cooled boiled water as well as pliers in case I couldn’t get the NG cap off.

On arrival at the car park we unloaded the parts of the Delta which had to be built in its entirety before getting Quinns out of the car. We sat him on a sling for the hoist just in case for any reason we had to get him out. I had my set of allen keys in case of minor issues with the Delta and a mountain biker on call in case of a more major incident.

Quinns smiles in his Delta buggy on a grassy embankment under blue sky. I am only just visible adjusting the feeding pump behind the Delta.

We were a team of ten. Four adults and six children. Of course the children were all much older than when we had originally planned this adventure. I felt confident now that Big Sister is bigger, stronger and more capable of handling her brother.

The weather had been dry for days so the path was dusty not muddy which made it easy underfoot/wheel. We modified the Delta to have two handles on the front to allow support from the front and lifting if necessary. The majority of the path was reasonably accessible to the wheels but some bits were harder to get over. 

Three adult women manoeuvre Quinns in his Delta buggy across rocky terrain with a view of the Wallace Monument in the distance. A seven year old boy is in front of the Delta.

It was a beautiful evening. The sun was shining. There was a slight breeze. It was neither too hot nor too cold.  We took it slowly just enjoying; the journey, the company, the attempt. 

We stopped roughly half way for a snack and to put Quinns’ feed on. After the break everyone was keen to keep going. The path was flat and easy until it wasn’t. With the rocky slope ahead of us too tricky for this attempt we explored going around the longer grassier route. It would have been possible but we decided not to this time. From our previous scouting trips we were also aware there was a second really tricky part. 

It was never our intention to get the whole way up on this attempt. Whatever distance we managed we would have been happy. It was about the journey, the going for it and seeing how far we could get. As a result the whole adventure far exceeded our expectations and who knows how far we might get next time with more preparation.

Quinns (in his Delta buggy), Big Sister and I smile at the camera. We are half way up Dumyat hill.

Feeding the force

Quinns has finally made it back to school. He’ll only be in for short periods of time a few days a week building up gradually as the weeks go on. His class were absolutely delighted to see him back and even now he’s akin to a celebrity as they scream and shout his name every time they see him. 

Quinns is smiling wearing his school uniform with white collar and red sweatshirt. He has a white tube coming out from his nose which is stuck onto his cheek with a piece of tape with colourful planets on it.

Initially the big question they asked was about the tube stuck to his face. One big change from Quinns being unwell and the most noticeable is the nasogastric (NG) tube that goes into his nose and down to his tummy. After various issues with his tummy and lungs he’s currently nil by mouth so he gets all food and medications down his tube.

Community nursing staff are supporting the school in this new method of feeding. They have been in and had a chat with the children in his class to explain it all, answered numerous questions and heard random tube related stories from the children.

Four times a day the NG tube is connected to a feed pump (affectionately known as ‘Darth Feeder’) which delivers a carefully calculated quantity of special feed. It’s a very efficient way for him to receive nutrition and he’s looking really healthy for it. Mealtimes are no longer long and drawn out as it would take him a while to chew and swallow the quantity he needed for sufficient calories.

The majority of the time it works fine. The biggest problem is when he manages to pull the tube out on a Saturday evening. We need to take him on a 30 minute drive to our local Children’s Ward for a replacement. All going well it’s a straightforward process but sometimes there are difficulties that result in an x-ray to check the position. 

At home, we miss the social aspects of eating. Before Quinns went into hospital we would always sit round the dining table as a family. Eating was a huge part of our lives. Quinns would have his eye gaze computer in front of him and we would chat while we ate. He picked out words on his device to tell us he was following our conversation or demand pudding or tv when he had had enough. 

We would often go out to eat on nights I couldn’t be bothered cooking or out for breakfast as a treat on a weekend morning. It doesn’t seem fair to do either now that Quinns can’t join us in eating. We have realised how often we mention food in casual conversations.

As well as being less visible in the community he also misses out on a big part of his social life. Often when we went out we found him making friends with people at other tables while we were eating. They would make themselves known to us at the end of a meal telling us he had been smiling at them.

We’re hopeful that as he gets stronger he might get back to eating orally because he previously loved food. Especially cake and custard! While we wait and if he doesn’t we will find ways to adapt to the new eating situation and find ways to ensure his place in the community. For now we are embracing the brilliantly patterned tube tapes we’ve found on Etsy. Everyone is excited to see what he’s got on each day whether rockets, aliens or helicopters!

Routine brain surgery

When Quinns ended up in hospital last year caught up in a dystonic (choreic) storm nothing was working to break him out of it. We had exhausted all our strategies at home and everything the doctors tried also failed. He ended up heavily sedated to control the movements and on a ventilator to keep him breathing. He had no quality of life. The only option left to try was described as ‘routine brain surgery’.

Photo of Quinns smiling. On his t-shirt down the left sleeve reads the word 'Recharge'.

After being flown to the Evelina hospital in London he was fully assessed, and with his new diagnosis of GNA01, was deemed an appropriate candidate for a Deep Brain Stimulator (DBS). Although far from routine for children, DBS has been used for adults with movement disorders like Parkinson’s for a number of years. 

Usually candidates spend about a year preparing for the device to be fitted. They undergo assessments to monitor involuntary movements so that changes can be tracked after the DBS is fitted. For children the surgery is carried out under general anaesthetic. A week or so after surgery the DBS device is turned on. Changes to the electrical pulses are then made slowly with frequent trips to hospital.

In Quinns’ situation speed was of the essence. There was no time for any preparation. Two small electrodes were implanted into his brain sending electrical impulses to the part of his brain that controls his movements. The device was turned on immediately with the simple aim to break the dystonic crisis and get him out of intensive care. 

Thankfully it worked. His movements lessened allowing the levels of sedation to come down and finally he made it off the ventilator. But what does having a Deep Brain Stimulator mean for him now?

To keep the device working well we need to remember to charge it every day. The electrodes are connected to and powered by a small battery pack which is implanted in his tummy. We hold a charging device to the battery pack in his tummy for about 15 minutes. It is a straightforward process that has quickly become part of his evening routine.

Like someone with a pacemaker he will need to alert airport security to the presence of his device when he travels and he will need to have any MRI scans in a designated DBS centre. He should also avoid activities that risk dislodging the probes or damaging the wires.

He will need to make regular trips to the Evelina in London for check ups and for any adjustments to be made to the device. The DBS should last about 25 years and will hopefully help prevent any future storms.

While he has been recovering, as well as his body being a bit stiller, we have also seen slight differences in his hand function compared to before the surgery. Although the initial aim was to rescue him from the dystonic crisis it is hoped that further improvements can be made to his movements by tweaking the electrical pulses. 

This far from routine brain surgery has not only saved Quinns’ life but it may also improve his quality of life.

Home at last

After five ambulance rides, two air ambulance flights and four admissions across three hospitals (Forth Valley Royal Hospital, RHCYP Edinburgh, the Evelina London and then Edinburgh again) Quinns finally rang the bell to signal his discharge from hospital 171 days after admission.

Quinns in his wheelchair reaches up to help pull the cord his mum is holding to ring the bell to signal the end of his long stay in hospital.

Unfortunately he was only home for three nights before being admitted to Forth Valley Hospital for another six nights.

Thankfully, a full six months after his initial admission, Quinns is now home again where hopefully he will stay and fully recover from his adventures.

Big Sister and Quinns smile directly at the camera.

Thanks again to everyone who helped and supported us along the way.