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!

Thank you

Over the last few months we have experienced some of the very best of the NHS. While sadly other family members have not due to increasing pressure and broken systems.

I am looking at the camera while Quinns cuddles into my shoulder. He has an oxygen mask near his mouth, a blanket round his shoulders, shaved head and very long eye lashes.

Quinns has been very unwell since the end of September. I don’t think my brain has processed quite how unwell yet. Thankfully his care has been great and he is on his way to being home. I’m not quite ready to share the many complexities of what has been happening but hopefully as he continues to recover and rehabilitate my ability to articulate will return.

He has been helped and is continuing to be cared for by so many people it’s difficult to name them all but here goes.

This New Year we are very grateful to the doctors, nurses, physiotherapists, dieticians, speech & language therapists, occupational therapists, psychologists, radiographers, surgeons, anaesthetists, pharmacists, phlebotomists, play specialists, hospital teachers, cleaners, caterers, administrators, specialists, porters, blanket gifters, volunteers and entertainers at Forth Valley Royal Hospital in Larbert, the Royal Hospital for Children and Young People in Edinburgh and the Evelina Hospital in London.

Special thanks to the ScotSTAR retrieval team, paramedics and air ambulance paramedics who got us safely to where Quinns needed to be. I have some amazing stories to share of our journeys!

Also as a family we couldn’t have managed without Kindred, Ronald McDonald House, the Edinburgh Hospital Children’s Charity, the Evelina Hospital School, Beads of Courage and of course all the support, love and kindness from our family and friends.

And finally thanks to the listeners, the pyjama enthusiasts, the ones who were always there, the task givers, the shoulders to cry on, the banner maker, the card makers, the hamper givers, the jokers, the organisers, the sorters, the providers, the bead supplier, the chair deliverers, the video makers, the new friends, the creatives, the tea makers, the custom pillow makers, the custom support makers, the messagers, the massager, the visitors, the cake sender, the flower senders, the chocolate and sweet suppliers, the dinner providers, the Disney enthusiasts and the music providers.

Thank you.


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.

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.

School ready

I’m preparing myself for Quinns starting primary school. I’ve got the school uniforms sorted, the school bag featuring Cars is bought and the lunch bag is ready for its daily flask of hot soup. Practical issues aside I’m trying to get my head around him being out of the house five days a week! 

Photo of Big Sister and Quinns sitting together on a red sofa both wearing dark school shorts and white polo school polo shirts. They are both smiling.

Four weeks after Quinns was born Big Sister started school. Constantly during her first term and his first six months she asked what primary would she be in when Quinns started school. P6 we would answer. “P2?” ’P7’, “P3?” ‘S1’ and so on. Periodically over the last five years she would ask again and we’d go through all the variations for her. Now we’ve reached P1/ P6 it is in no way how we pictured it.

Before covid hit I never really thought about Quinns being vulnerable but five months of shielding him has made me far more aware than I’d like. We are only now beginning to surface from our bubble and are very quickly having to adjust to the outside world again before the massive leap of school.

It’s frustrating hearing that most kids will be fine if they get covid. Quinns is not most children. Even although shielding has stopped there still remains a higher chance of him being seriously ill if he catches it.

As his mum I want to wrap him up and keep him safe even although I know that’s not in his best interests. I get really angry when people suggest a blanket exclusion of us and other ‘vulnerable’ people from society so that everyone else can just get on with their lives. 

Quinns is the reason we must all continue to take the risk seriously and follow the guidance. He’s already excluded from the ‘most children aren’t at risk category’. I don’t want him to be excluded from school and his right to an education. He is just like any five year old. He has the same rights to education, to life, to everything including seeing his friends at school. 

I do worry sometimes that maybe I am being over cautious and over protective but I think if he was your child you would be too. 

All things considered provided the numbers are low enough we won’t keep him home and deny him his first day at school excitement. It may not be exactly what we were planning for but at least the same can be said for all the children starting school this year.