Inclusion

National Cinema Day

qtandcp, , , , , 1 Comment

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.

Quinns, trains and…Changing Places

qtandcp, , , , , , , , , Leave a comment

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.

3 year old Quinns sits in his working chair smiling with a handwritten sign in front of him which reads 'Nobody should have to lie on a toilet floor! #ChangingPlaces
7 year old Quinns sits in his car seat cuddling his toy giraffe. He is smiling up at the camera.

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! 

Feeding the force

qtandcp, , , , , , , 2 Comments

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!

Flight GNA01

qtandcp, , , , , , , , , , , , 4 Comments

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. 

Big Sister and Quinns smile together looking up towards a tv above the hospital bed Quinns is sitting atop in his comfy chair.

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. 

You can find out more about GNA01 from the Bow Foundation website and watch the video Who is GNA01?  

Spontaneous combustion

qtandcp, , , , , , , , , , , , , , Leave a comment

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!

Quinns pushes a button to make a hot air balloon rise while Big Sister looks on.
Quinns operates four stick controls which lead up to a metal demonstration plane while Big Sister looks on.
Quinns handles the stick controller of a flight simulator.

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

qtandcp, , , , , , , , , , , , , , , , , 1 Comment

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

qtandcp, , , , , , , , 2 Comments

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…

qtandcp, , , , , , , , 1 Comment
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

qtandcp, , , 1 Comment

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

qtandcp, , , , 2 Comments

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.