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.

Fire station

When the fire alarm went off at school recently lots of the three and four year olds at nursery were a bit scared. The loud noise. The rush of activity as everyone hurried outside to congregate.

Of course, not our Quinns. He loved it! I’ve had reports from various sources about how excited he actually was at seeing everyone in the school and then even better seeing the fire engine!

So of course when we heard the local fire station was having an open day we knew we had to take Quinns. In fact every time we discussed it his hand shot straight up in the air meaning ‘I want to go!’

I wasn’t quite sure what we’d experience but they had laid on quite a show with various emergency vehicles on display. There were opportunities to get inside a few different vehicles and have a look at the controls. I think by now you can probably see where this is going.

The fire engine was not accessible to him. I do think that is understandable though. While I have every dream for his future career I’m not sure fireman is likely as I’m fairly certain they are in peak physical condition.

It might surprise you though that when Quinns had to be taken to hospital by ambulance a while back that actually it wasn’t very accessible. After carrying him on the only option was for me to lie on the bed and hold Quinns across me.

We also had to leave the Bug behind in the Health Centre to be picked up by Dad. So when we arrived at the hospital I had to carry Quinns from the ambulance bay to the ward as standard wheelchairs just don’t work for him. That was all fine when he was two but it worries me slightly now that’s he four.

Anyway back to the fire station open day. We found out that there’s a new fleet of ambulances. The new ones have been kitted out with a five point harness and have more space so will be able to transport Quinns comfortably along with the Bug or wheelchair.

The lift also allowed Quinns access to have a look inside. The staff were incredibly helpful when we asked if Quinns could have a look. Being the first to ask for access meant the ambulance had to be driven into a position to give the lift space to be lowered. Obviously that caused quite a scene as everyone had to move out of the way.

Once on board no-one else was allowed on with him much to the annoyance of Big Sister who waited patiently for Quinns to have his shot.

Again all this is fine now when Quinns is four but I can see why an older child would choose not to have such a fuss made in order to simply see inside an ambulance.

Park 2

This blog is now one-year-old (is that a good enough excuse for cake?) We dreamt up its name in a sun-drenched outdoor pool after our experience with airport assistance. I wanted to share our experiences in an attempt to make people better understand life with a disabled child.

Sadly we don’t travel quite as often as I’d like but I think that is probably fairly typical with a young family. You may have spotted that the experiences I share are mainly much simpler; I feel like I write a lot about toilets and play parks.

While spending time in play parks with your children is a fairly typical experience of most parents I seem to have taken it to another level. Having spent the majority of this year fundraising for an accessible roundabout in our local park, I now seem to have a bit of expertise in the area. In the past year I’ve thought about equipment design, considered the benefits of play on child development and even discussed the economics of play parks for the wider community.

Hopefully I’ve managed not to suck all the enjoyment out of all the play parks we’ve visited for ‘research’. The kids are well aware they have to pose for photos before being allowed to actually play!

Photo of Quinns and his Big Sister enjoying an accessible roundabout with Dad pushing and a Changing Place toilet in the background.

There is absolutely no doubt that this photo makes me smile. I love that Quinns and his Big Sister can play together in this way. You can see in the background that the Changing Place toilet is there if we need it. Reassurance that we can stay in this park for as long as we want. It was the sort of park where a family could spend the whole day. I should be really happy. In that photo it would appear that all my ‘dreams’ had come true except that they had not.

The problem was that the roundabout stood alone. It was separate from any of the four large play areas. As a family we managed about fifteen minutes of fun before the spinning became too much. No other children came near us and there was nothing else for Quinns to play on unless you count the ramp to nowhere he could go up to get a better view of all that was off limits to him. He was pretty much excluded from everything.

Photo of Quinns being joined by a friend on an accessible roundabout

On that same trip we also visited another park. This time we met up with friends who had children of similar ages to Quinns and Big Sister. The park itself had at least three areas with play equipment. There were accessible roundabouts in two of them and high backed swings in two. We were able to play in one area for a while, go for a walk while enjoying an ice cream and then play together in a different area of the park. It’s a really simple thing but for every park there needs to be something that Quinns can access with and at the same time as his friends.

This park was exceptional but while it was definitely better than our previous experiences I must admit I’d like to expect more. I said in my blog, Park life last year that I’d love to see an accessible roundabout in every park. It is still my dream that every park should have an accessible roundabout.

I now want to extend my vision. While every park including even the smallest play area should have an accessible roundabout every large park should have a range of equipment or even just more thought for children in wheelchairs and how they can be included in the play.

From our own experience wheelchair accessible surfaces are a must. Paths, roads, bumps and tunnels would be simple to do but add a lot of fun for wheels. A simple table for sand or water play would bring these play elements and more to their level. Table style musical instruments, so that friends can look each other in the eye as they play together, would be much better than sitting sideways on to a vertical board.

What I’m suggesting doesn’t need to be complicated or expensive just considered. Every child has a right to play and we should be making that happen.

 

Nothing compares?

Photo of Quinns and his best friend. Quinns laughs while his friend pulls a face.

When you have a baby there’s a list of developmental milestones to be ticked off. We as parents spend the first year or so worrying about the exact timing of each. We’re told not to compare our baby to others but we do it anyway. Is she crawling yet? Has he got teeth? If Big Sister were anything to go by it’s all over in a flash and it doesn’t really matter when they happen because eventually they all do.

Except in Quinns’ case they don’t. I threw out that list a very long time ago. It’s no longer important that he hasn’t met a milestone that he was supposed to have met at four months. Of course, we celebrate every small step he takes but he is nearly four and there’s no point dwelling on something that his friends are no longer working on. They’re onto bigger things like socialising with friends, learning to read, experiencing life and becoming more and more independent.

Even although he’s not met some of those first milestones (and no, we don’t know whether he ever will) he is just the same as anyone else his age.

It doesn’t matter that he can’t walk because The Bug helps him move around (and hopefully soon the Wizzybug!) It doesn’t matter that he doesn’t use words to talk. His body language, facial expressions and of course, the eye gaze computer all allow him to communicate with anyone willing to take the time.

We weren’t supposed to compare our babies and we’re not supposed to compare our children. However I actually find comparison a really useful tool in ensuring inclusion and independence for Quinns.

I often ask myself what was Big Sister doing at this age? What did we allow her to do or not allow her to do. Would we have taken her to Alton Towers at four; no, probably not. Would she be going to friends’ birthday parties; yes, she would.

Thankfully she helps uphold the rules. She grabs the toy from Quinns’ hand at the dinner table declaring ‘no toys at the table’ because that is what she was always told.

When I turn on the eye gaze for Quinns at mealtimes he immediately goes to the vehicles section. I hear truck, van, car, ferry, dinghy etc over and over again. That probably sounds familiar to any parent of an almost four-year-old boy.

That’s why it’s also really useful to compare with Best friend. So what activities is Best friend enjoying or not enjoying at the moment? Would he go for a sleepover at this age? Is he independent at a birthday party? What is he learning; the alphabet, his numbers?

I also compare myself to the other mums. Where are they at the party or in the swimming lesson? Where they are is where I need to be.

I don’t want to miss out on eating cake and chatting because I’m supporting Quinns to play party games although at this point I may not be the only mum sitting in the circle. At the swimming pool I need to ask myself what Quinns needs for me to be able to sit and watch while he has a swimming lesson.

How he gets places may be very different from his peers but with a little bit of help he will get there and hopefully, if I do my job right, he won’t have the embarrassment of his mum hanging around when he’s eighteen and in the pub with his mates!