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.

 

Staying at home

Photo of Quinns and his Big Sister together on the sofa playing on the tablet Big Sister is holding.As everyone now comes to terms with being in lock down our family have been shielding for well over a week. Quinns’ respiratory issues make it too risky for him to be around others. My asthma means I too am classed as vulnerable and as his primary carer I can’t take any chances.

When Quinns was first diagnosed our world shrunk. There were barriers, both social and physical that closed in on us as many people and places became inaccessible to him. I’ve spent considerable time pushing back against those barriers trying to widen the scope for him (and others).

Now as the Covid-19 pandemic strikes that same thing has happened again.  Only this time it’s more extreme and everyone is in it together. You no longer have access to the people and places you had before and that is not easy.

While homeschooling Quinns & Big Sister last week I was finishing off an online course (I’ve given up attempting to do any work of my own!) about Inclusive Education. Now as the schools close and everyone stays home in exclusive bubbles, the entire situation is almost exactly the opposite of inclusion.

Our discussions about schooling for Quinns revolve around balancing his  learning with socialisation. We want Quinns to go to the same school as his friends because we rank peer relationships pretty highly. How many of our children are going to miss their friends because they are being home schooled and no longer able to participate in extracurricular activities?

I appreciate we all have considerable worries at the moment. We must pull together to get through it but during lock down I hope people will have a chance to reflect and learn from this experience what a lot of disabled people already know, the importance of access and socialisation.

We are very fortunate to be locked down in our ‘new’ house with amazing garden. It’s ideally set up for Quinns to access everything he needs including chats with family & friends online and of course he’s fully included in our little quartet. We plan to make the most of our time. Getting round to all the activities we never have time for normally all the while trying not to let the worry take over.

Stay at home and stay safe everyone.

Swimming facilities

Would you be willing to parade in public in your swimming costume? I am discovering a level of body confidence that I never knew I had because I am no longer willing to cover up and pretend that what is being provided is ok. I am no longer willing to make it work but I do want to make swimming happen for Quinns. So far that’s involved walking through a busy public area in our local leisure centre dressed only in my swimming costume.

Close up photo of Quinns eye gaze with the words 'They went to the swimming I want to go to the swimming'

Scottish Swimming recently released a video to launch their inclusion campaign #SeeMyAbility. I totally agree with the message “Don’t separate, segregate or keep me apart…make inclusion, integration and togetherness our task”. I also fully agree with their tagline ‘Everyone can swim’ but from my experience of finding pools with suitable changing facilities for Quinns I’m not so sure that the practicalities have even been considered. 

We are working up to a family visit to the home of Scottish Swimming (where there is currently a £20 million redevelopment underway). Why are we having to work up to it? The Changing Place, that we have been told is the provision for the sports centre, isn’t even in the same building as the swimming pool. In fact it’s not even in the sports centre building next door. 

It is situated in an arts centre that is a 5 minute walk away from the pool building. The walk currently takes you past a building site and down a hill on a busy University campus.

Here’s hoping my new found body confidence in order to make swimming happen for Quinns will allow me to enjoy the feel of the breeze as I stride it out on my way to the pool! 

Caution Wet floor

Even with very little control of his body out of the water Quinns is extremely comfortable and happy in the water.

Quinns is not the only keen swimmer in our family. Big Sister is an aspiring olympic swimmer. Swimming, therefore, is an obvious choice of activity for the four of us to enjoy together. You would like to think it would be easy but it’s not. 

Photo of a sign saying 'Caution Wet Floor' outside a Changing Place Toilet

One of the reasons we chose to live where we live is access to what we thought were really good swimming pools. However we now realise none of the pools close to us are ideal for Quinns. The nearest pool with everything he requires is 20 miles away. 

Since swimming has benefits for people no matter their ability you would think the facilities would be more accessible.

Our local leisure pool has recently put in a Changing Place. That in itself is great but it’s not poolside! I’m not sure how that’s going to work once Quinns is bigger and needs hoisted but for now we can make it work with waterproof mats and towels in the Bug.

Before and after our swim we have to walk right through the public reception area of a busy leisure centre!

I’m not sure who is more uncomfortable when our little family troupe walk soaking wet through a public place but I know for a fact that it is inconvenient for the staff.

Swimming the dream

Quinns recently graduated from his Water Babies swim class with an underwater photoshoot. 

Photo of Quinns swimming underwater smiling at the camera

When he was eight months old and as our concern grew for his development I started taking him to the class. The health benefits of swimming are well recognised and I felt sure that he would gain from the water. That same sentiment was echoed when we ended up in hydrotherapy pools as part of various groups. At times over the last few years we were getting changed for swimming up to three times a week.

What I hadn’t really considered when he started the class was how much Quinns would enjoy being in the water. The massive smile that he could barely contain every time he entered the water told me and everyone else around how much he loved it.

In the beginning taking him to his swimming class was easy. He was changed the same way all the other babies were changed and then carried to the pool. As the others advanced to toddling and finally walking we still had the same routine. 

When he outgrew the baby changing table we looked for alternatives and negotiated the use of a therapy room. The adjustable height bench made it work for us even though I had to carry Quinns through a corridor that went from the building entrance to the changing room. Although we didn’t have far to go it wasn’t pleasant underfoot. 

Despite the negotiation to have the room there were times when one was not available. Each time we refused to use the floor of the disabled toilet. One time however we made it work by changing him on a couch in the reception area. It was hardly dignified.

As he grew ever bigger it all became more of an effort. It was increasingly difficult to carry him the distance to the pool and tricky not having access to shower facilities in the therapy room. Eventually one day when we were turned away because all the therapy rooms were booked for treatments I realised I was tired of being the one who made it work.

Our options for alternative classes are distinctly limited because so few swimming pools have adequate facilities. However we have now managed to find a suitable class with a Changing Place style set up that will work longer term.

So while I may be tired of making it work in the Water Babies class, of course that smile together with the benefits of the water means that making swimming happen for Quinns will always be worthwhile.

Can you hear me?

I was recently on a course where speakers would present on various topics relating to inclusion. 

Pencil line illustration of a young boy shouting into a microphone.

At the start of one presentation a support person held the microphone to the speaker’s mouth. ‘Can you hear me?’ said the speaker. As we shook our heads the supporter adjusted the microphone. ‘Can you hear me?’ 

Again the answer was no and more adjustments made. ‘Can you hear me?’ This went on for several minutes until finally we could hear the speaker and I can assure you by the time the presentation began we were all listening. 

After that for the duration of the talk the supporter quietly held the microphone to the speakers mouth, only switching arms as required. His job simply to help amplify the speaker’s words.

Knowing how to support someone who is physically disabled can be really difficult. A really fine balance needs to be struck between supporting someone to do something and simply doing it for them. 

I recently helped Quinns make salt dough ornaments. They looked pretty good but my own experience working with dough and icing was obvious. I had taken over. I overstepped the mark of enabling and instead made them for him. I like to think that’s what any mother would do though… 

One evening we were sitting at the table. Quinns had his eye gaze computer in front of him. Big Sister was writing a letter. She finished and passed it to me. I read it to myself and told her how great it was before putting it down beside me. 

Quinns very slowly but carefully picked three words. ‘I. Want. See.’ 

Close up photo of the screen of Quinns' eye gaze computer showing the word and images for I want see in the speech box.

Of course, I had forgotten to show him the letter his sister had been working on. A great reminder that he’s so often passed over. We share things and show each other things all the time. His presence in the room isn’t enough to include him. He needs help to get in on the action either by someone moving him closer and / or helping him with the relevant piece of equipment but at the same time not overstepping the mark. 

Quinns will probably always need help. There are some amazing designs and technologies available that will enable him to do a whole lot but it’s really important that he also gets the right support person. The one who will quietly hold the microphone and allow Quinns’ voice to be heard.

The best party ever

 

Photo of a page of a children's book with an illustration of children at a birthday party wearing party hats and holding presents.

It’s party season and the time to reflect on the past year. Although my posts about parties have mostly been negative Quinns has actually made it to a fair few this year and had a great time with all his friends. Until Quinns came along we had no real concept of an inclusive birthday party so it’s been a steep learning curve for us so I thought it might be helpful to share some of our best party experiences.

The best parties for me are the ones where I do very little. We’re not quite at the stage of drop and go but enjoying a cuppa with mum friends while the kids play is definitely more fun than having to run around with energetic children. The problem is that Quinns needs someone to push him to where all the action is happening.

My solution has been to hand him over to Big Sister or when she’s off gallivanting at Brownie camp someone else’s older sibling. We really appreciated the offer of help from the children’s entertainer at one party. Usually we would accept such an offer. That time though we had an opportunity to bring an older sibling into the fun who otherwise would have sat bored on the side. It also meant the entertainer was free to run the party for everyone.

Any game where Quinns stays in the Bug is ideal for me. Our favourite has got to be musical islands. Squares of carpet or foam are put on the floor and when the music stops the children run or roll onto one and just like musical chairs each time a child is eliminated and an island is removed. Quinns is in with the same chance as everyone else to win (unlike musical chairs which he would always win as he comes with his own chair!)

Pass the parcel with a running element, parcels in easy to open bags, ball games and dressing up games were also a lot of fun and really accessible to Quinns. Of course, kids will generally find entertainment in the simplest of things. One party stands out for its unexpected child-led entertainment. It’s no mean feat pushing Quinns in a very heavy Bug up a steep grassy slope but great fun running back down chasing his friends!

Quinns’ dairy allergy makes even the birthday buffet tricky for inclusion. A few trays of surprisingly dairy free foods (ones that you’d expect at a kids party) strategically placed next to Quinns at the party table but available to everyone is perfect for us. (Note: Quinns has nearly fully climbed the milk ladder so this is less of an issue for us now although still a very important point for any other allergy children.)

The clean up operation is a difficult one. With so few Changing Place toilets around we don’t expect a party to offer this facility although this did happen for the very first time  recently! Of course, for the short duration of a party Changing Places are not always necessary (or rather we have managed so far). We did appreciate the use of a bed in a hotel room at one party. It’s not necessarily an ideal set up (I assume a hoist could have been made available on request) but it did come in very handy and the bed at least made for a comfortable Quinns.

There have been many good times this year and hopefully there are many more to come. We won’t always get it right but the most important thing is to try to include him. It’s alright not to know how best to do that and it’s also OK to ask. Together we’ll come up with solutions.

This article has some really useful advice on hosting an inclusive party – https://www.ageukmobility.co.uk/mobility-news/article/disability-wheelchair-inclusive-party-games-activities.