Eureka!

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

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

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

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

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

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

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

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

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

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

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

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

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

Swings and roundabouts

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

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

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

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

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

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

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

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

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

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

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

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

e-Sgoil

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

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

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

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

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

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

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

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

Inclusion at a (social) distance

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

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

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

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

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

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

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

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

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

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

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.

 

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.

 

 

Look to read

Photo of a eye gaze computer grid screen with the words 'Quinns be wanting train' selected

Life can be hard at times but I’ve learned the importance of finding rainbows. One of the major positives of being in lockdown has to be the improvement in Quinns’ use of the eye gaze.

Quinns has had his eye gaze computer for communication for over a year now.  I had been transporting it between nursery and home for a few months before lockdown started. Now the eye gaze is set up on our dining table at all times, as opposed to being left in a bag after carrying it home from nursery, and the four of us have been sitting down for meals together three times a day. With no demands on any of us to be anywhere else Quinns has had lots of time to practice selecting the words/pictures and we’ve had the time to listen to him.

Like any child Quinns started out babbling only he used the eye gaze. He would choose words and then repeat them over and over. Every new page or board is a whole new set of vocabulary for him to explore. It was tedious but also very necessary.

Now he’s reached a point where he picks out relevant words from our conversations. When we talk to Big Sister about the tiger in her school work he pipes up with ‘tiger’. His level of understanding is such that when Dad and I were having a fairly in depth discussion about going to hospital with Covid 19, Quinns chipped in with ‘hospital’ and  ‘ambulance’.

He’s showing us that he’s following everything we say. Of course that also means he’s got good at demanding. When he’s finished his main course he always asks for ‘pudding’ and constantly says ‘drink’.

We know him so well we know what he means with just one word but we must encourage him to build his words into sentences. He has shown us he can do it especially when he wants something; ‘Quinns be wanting train’ and ‘Train now Dad’ are a couple of ways he’s expressed his desire to go to the train station. Now he can’t go out and see the trains, train has been replaced with PlayStation, YouTube or tablet.

He has the option of some ready made phrases including a range of jokes. The first part of the joke is one button and the punch line another. The jokes themselves aren’t necessarily funny but him saying ‘that’s so funny!’ after every joke always makes us laugh.

During lockdown we’ve stayed connected with family and friends via Zoom. Dad is a bit of a tech whizz and early on worked out how to share Quinns’ eye gaze screen and sound while on calls. This means Quinns has been able to talk directly to people using the eye gaze. It’s lovely to see both his screen and his face at the same time as usually we are sitting beside or behind him.

The absolute best bit of the eye gaze though has been getting a programme called Look to Read. When Quinns scans the words with his eyes it reads them out. He reads entire books this way. The freedom it allows, both him and me, is incredible.

Recently during a chat with his friends the only thing Quinns wanted to do was read. Of course I made it happen for him by sharing his Look to read screen. It was amazing to watch his friends faces as they listened intently to Quinns reading them all a story.

With a little bit of camera trickery by Dad we took this video – tiny.cc/BuzzBug – of Quinns reading to share more widely with friends. You can see the screen he’s reading from on the left and Quinns face on the right as he reads.

Massive thanks go to the amazing person who organised Look to read for us (and for everything else she does for us!) and also to Smartbox for making all this possible.

For Susan, the girl in the rainbow dress (https://www.facebook.com/teamhamish/)

I’m fine

 

I’m fine. Or at least that’s what my photographs from the last eight weeks show.

Photo of a frog stuck in a plant pot

In reality I’m not fine. I’m processing a major event along with the rest of the world. It’s hard to admit that life is difficult when you know that it’s tough for everyone. Everyone has circumstances that make this situation difficult whether it’s isolating alone or as a working parent; losing a job or doing a job that’s particularly demanding. Everyone is doing what they can and hopefully communities are rising to the challenge of supporting each other just as ours has.

For us the shutters came down around our family of four a week earlier than lockdown. My instinct was to protect Quinns as I felt he was particularly vulnerable. I questioned myself constantly for several weeks before we finally received his shielding letter. The letter brought a certain amount of relief. Knowing that my instinct was right and that professionals agree is comforting. It doesn’t however bring back the support that we are missing.

We’ve gone from a team that couldn’t fit in the school’s biggest meeting room to just the three of us looking after all of Quinns’ needs while Dad works full time at a stressful job from home and Big Sister is home schooled.

There’s no longer the same NHS input as those who support us have been redeployed to cover other areas. On a practical level I have been unable to get the bigger size in Quinns’ support shoes from orthotics and have no hope for the next few months.

At the beginning of lockdown Dad had to fix the headrest on Quinns’ chair while receiving instructions on the phone from the rep. Later that day the rep was furloughed. For a while now a bit of the chair falls off periodically. We simply stick it back in.

Quinns’ three Nursery days a week provided not only education and socialisation for him but also space for me. He had the benefit of 1-1 support in the classroom while personal care was provided 2-1. Now it’s me providing it all and my much needed space is non-existent. My one saving grace is his classmate, Big Sister who also covers as my teaching assistant and occasionally additional support for personal care.

We chose to stop the carers who came into our home a couple of times a week to help us out. The risk to us and others was too great and we felt we could manage. However with grandparents all isolating in their own homes there’s absolutely no hope of respite. My only relief is when Dad manages to take holiday from work.

Much as I have wanted to I have not had the time or energy to write. I have however tried my best to keep up with developments. There have been times when I’ve desperately wanted to shout about frailty guidelines, DNR letters and serious changes to legislation. It rang so true when I read recently that it’s difficult to write when you are afraid.

‘We are all safe and well and making the most of our time together’ is my cover story for a level of exhaustion and anxiety that is off the chart.

Knowing that we are shielding at home till at least mid July, the only thing we can do is keep on going. We plan to make the most of the opportunity to ‘home school’ making use of the skills and resources available to us (it will come as no surprise that our home school has it’s own name and brand!)

I can’t take on all the roles of Quinns’ team but I can still be an advocate for value over vulnerability by sharing our positive stories.

And one last thing if you’re needing a break in lockdown and haven’t watched the film Crip Camp yet I’d highly recommend it!

Stay home save lives

Photo of Quinns sitting on Big Sister's knee on a picnic mat with apple tree in the background.

Life is a bit full on for everyone at the moment. Round the clock caring responsibilities without a break as well as home schooling is keeping us busy. We are shielding at home for the next 12 weeks but we are happy, healthy and making the most of our time together.