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.

Who cares?

Photo of Quinns sitting in his Squiggles pack watching tv beside his Big Sister who is sitting on a bean bag. They are facing away from the camera and both are wearing hoodies.

Who cares? We all care; I do, Dad does and Big Sister does. As parents and sibling of Quinns that is our role in Quinns life. That’s the same as any family except that it’s rarely thought of in that way. Quinns’ needs bring our caring positions to a whole other level. 

My caring role is fairly obvious. As he gets older it becomes more and more distinct from what I would do for my child anyway. At four years old you’d expect him to get himself dressed and feed himself (perhaps with a certain amount of persuasion, cajoling and frustration but dressed and fed all the same.) I have to do all that for Quinns just as I have done since the day he was born. Only now he’s a busy four year and we have a full family life. 

On top of that there’s appointments, equipment, meetings, paperwork etc plus the communication difficulties which often leave me completely in the dark about what Quinns’ needs. There’s little doubt that all this takes up a significant amount of my time.

But what about Big Sister? It’s harder to quantify her young carer role. She loves her brother like any Big Sister. She loves to read to him and play with him. She has household chores to do like any other eight year old. She’s also quick to point out the unjustness of having to do those chores when Quinns does not. ‘It’s not fair!’.

I depend on her a little more than perhaps I should. Together, when Dad’s travelling, we get the three of us out to school in the morning. As well as being the time keeper to make sure we’re not late she cleans Quinns’ teeth, brushes his hair and fastens the Bundlebean (cosy toes) to the Bug. She’s an extra pair of hands that I couldn’t do without. 

She has the patience of a saint. Quinns eats orally. Meal times are long and she has to wait till Quinns is finished before we can move on to the next activity. Transferring Quinns from one piece of equipment to another, making sure every single strap is fastened so he’s secure, takes time. It all takes time.

Our world revolves around Quinns. We had to move house to suit his needs and now we need house adaptations for Quinns. Days out and holidays are all about where we can go that will fit Quinns’ needs. Parties, even her own, are dictated by his needs. Not hers.

The appointments and people are all for him. She’s been around for all sorts of appointments with physios, OTs and equipment set ups. You can ask her to help with any chair, tray etc and she will know. As we start to welcome professional carers into the house she is a great source of help and support for them.

She understands Quinns. She makes the cheeky requests on his behalf ‘Quinns wants to watch TV’ or ‘Quinns wants a snack’. She keeps it real and us in check to make sure it’s all fair. As well as picking up his non verbal signals she instinctively knows how to model language on the eye gaze computer. She’s even helped train the staff at school and shown them how the eye gaze works.

She sings him to sleep when I just can’t do it anymore. She sits with him when he is poorly. She fetches the thermometer, draws up medicines and prepares his thickened water. She accepts that she must entertain herself while we look after him. 

All she wants to do is spend time with him and do the things that any other siblings do without a fuss and without a fight. She sees my tears and rage when it feels like the world excludes her brother. She now points out the lack of accessibility and is willing to challenge anyone who parks in a disabled parking space without a blue badge.

Her drawings, voice and images helped shape our fundraising campaign for accessible play equipment. Her passion and enthusiasm for raising awareness for accessible play equipment and Changing Place toilets (despite her eye rolling at yet another photo of a toilet) are difficult to ignore.

She loves her brother and is so proud to be his sister. She takes her caring role so much in her stride that it’s easy to forget that she has a heavier burden to bear than some. I couldn’t do it without her. She is a young carer. In fact she’s a super sibling!

World Toilet Day 2019

Photo of Quinns holding Changing Places paper glasses in his hand beside his Big Sister who is holding glasses and moustache up to her face.

As World Toilet day comes around for another year I thought it might be useful to see what progress has been made with Changing Place toilets since my post last year

Lots of you have pointed us in the direction of Changing Place toilets and we’ve tried out as many as possible. We found one in a play park right next to the accessible roundabout and there was a new one in our local swimming pool which allowed us to go swimming together as a family.

They’ve helped us enjoy family time at museums, art galleries and even at safari parks and festivals. On our travels we’ve discovered that there are really advanced ways to flush toilets but we’ve also found adjustable height benches with manual systems! 

I was delighted to book a Mobiloo for a local fundraising event and loved seeing it parked right in the middle of my own community. Its presence raised a huge amount of awareness of the need for these specialised facilities. The fact that it was used a total of 11 times in the three hours it was there speaks volumes. 

Sadly in the past year there has only been one new Changing Place toilet in the whole of our local authority area. I wish that number had been higher but hopefully discussions about new ones are happening right now. I know that some thought has gone into the possibility of a Mobiloo for the area. 

£2 million of government funding has been awarded to 22 motorway service stations in England specifically for Changing Place toilets and details of which ones have now been released. For us that means when we travel, we will be able to stop at our favourite services and not just the one that happens to have the right facilities. 

Photo of Quinns and his Big Sister outside a Changing Place toilet at a service station

Thanks to the strength of the national campaign there has been some legislative change. On the first of December it will become a legal requirement in Scotland for large developments to have a Changing Places toilet to gain planning consent. This is a major step forward to ensuring #incLOOsion happens.

Finally, Tesco is leading the way for supermarkets with its pledge of 35 new Changing Place toilets in stores countrywide. I’m sure the campaign will continue until all supermarkets, train stations, shopping centres, airports etc all have a Changing Place toilet. Something as simple as a Changing Place toilet really does make our everyday lives, even the most mundane of tasks like the weekly shop, that little bit easier.

Photo of Quinns holding a handwritten sign that reads 'Nobody should have to lie on a toilet floor! #ChangingPlaces'

The best day ever!

Just over a year ago sitting on a park bench I was inspired to write the post Park life. I sat with the friend we were visiting and I cried because of the limitations. A park with no suitable play equipment meant no possibilities for Quinns.

My experience that day also sparked a fundraising campaign for an accessible roundabout for my local park. With amazing support from our local community we are now making progress towards a more accessible and therefore more inclusive park.

It doesn’t end there though as my lovely friend, sitting with me on the bench last year, was also inspired. She took up the case with her local authority and they heard her loud and clear.

On our most recent visit, sitting on that same park bench, I had a much more positive experience. Installation of the accessible roundabout was nearly complete. We had hoped it would be ready in time for us to try it out but it wasn’t to be and we had to make do with peering at it through the fence. It made my heart sing that it will be ready and waiting for us on our next visit.

Earlier that day we collected Quinns’ Wizzybug (powered wheelchair for the under 5’s) from nearby for a year long loan. Now sitting on the bench in the park we watched as he tentatively moved around in it. This was the first day he was able to move independently of us. The first day he was able to chase his Big sister and play hide and seek with us by spinning himself around. The day he chose to come to me (albeit crash into me) and also the day he realised he didn’t need to stay in one place for a photo!

Between the potential of the new accessible roundabout and the Wizzybug this was a day full of enormous possibilities and no limitations for Quinns.

Party policy

It’s really hard turning down party invitations for Quinns even although it’s for a good reason. I can’t and I won’t accept them when they take place in a public building or business which has stairs and no suitable alternative access for Quinns. Him and the Bug weigh the equivalent of a ten year old child. Even although it may be possible and convenient at this point in time it is neither safe nor dignified to carry him up a flight of stairs.

If you’ve read The Lion Inside by Rachel Bright and Jim Field you’ll know the risk that the mouse has to take in order to make things better for himself. Of course, I‘m not risking being a lion’s dinner but by being ‘that mum’, the one who doesn’t accept invitations and makes things that bit harder I am risking exclusion for Quinns when the thing I strive for most is inclusion.

Photo of a page of the book The Lion Inside by Rachel Bright and Jim Field

Unfortunately we live in a society where accessibility isn’t given the attention it deserves. Blame is passed upwards. It’s not our fault it’s the landlord. It’s the builder. It’s the building regulations.

So often I hear that the minimum requirement has been met. There’s a requirement for a disabled toilet but even although that doesn’t actually meet the needs of the majority of disabled people it’s still fine because that’s all that was needed according to the building regulations (it’s been a lengthy campaign to get Changing Place toilets added to the building regulations for certain circumstances).

I also hear that age and listed building status takes precedence over accessibility.

‘Unfortunately we do not have alternative access to the building. As the building is so old it has proven difficult to be granted planning permission to make any large changes to the outside. Apologies for any inconveniences this may cause.’

In other words sorry there was nothing we could do but the aesthetic of the building takes precedence over allowing people access. Really? I’m sorry too that you won’t be receiving any of my future business.

It is of course amazing what a mother will do for her child but I am also safe in the knowledge that it’s not just Quinns that this affects. He’s not the only person in a wheelchair right now and any one of us; your parent, your child, could end up needing a wheelchair for any reason at any time.

When that happens you will discover just how exclusive and inaccessible our society is. When you find yourself unable to go to your local shop, favourite restaurant or kids party because it’s not accessible, then it’s too late. Depending on your circumstances at that time you won’t necessarily have the time or energy to fight and that’s why we all need to work together to change the view of accessibility now.

In a time when Quinns is able to use his eyes to operate a computer to communicate surely we can work out solutions to steps and stairs to make everywhere accessible that is also aesthetically pleasing. Surely we should all be thinking in terms of how can we make this as accessible as possible not how can we meet the minimum requirement.

‘there can never be an excess of access’  quote from the manifesto of Alec Finlay’s Day of Access.