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!

Journey to change

In the beginning I cried because my baby was broken. It was difficult taking him to Baby Sensory because he wasn’t doing what the other babies were doing.

I persevered because I knew he was getting something from it. He was experiencing the sounds, the textures, the stories and all the amazing effort that was put into each class.

Although we stayed a little longer than most I also knew when it was time to move on. Quinns needed the next stage just like his peers.

I cried more when I realised we would have to move because our house had so many stairs. Even although I loved that house it didn’t work for our family and had to be changed. Now we’ve moved, our new house works for us all and we love it.

I’ve recently graduated from the Partners in Policymaking course run by In Control Scotland. It’s hard to describe what the eight month journey entailed. There were many many lessons but my main takeaways are as follows.

Quinns is not broken. My instincts were right, he was perfectly placed in that Baby Sensory class for the time we were there and ready to move on to toddler group when we finished.

Now I do nothing but smile about my beautiful boy and all the amazing things he’s doing. He’s part of our community. His smile spreads joy throughout the village. We really appreciate the efforts being made by everyone around to make activities more inclusive for him. In general, I feel like we’ve got this!

My challenge is in supporting Quinns’ inclusion with his peers while inaccessibility works against us.

I don’t cry about Quinns now but I still cry about stairs; how he can’t get to the places I want to take him; about steps that make it harder for us to access things; about non-existent or abused disabled parking; and about the lack of changing facilities. All of which restricts us.

The problem isn’t just ours to fix. Any one of us could need a wheelchair at any time and find ourselves excluded from many things we take for granted. Inclusion would undoubtedly be easier with better accessibility.

Quinns definitely does not need fixed but our inaccessible environment does and not just for Quinns but for everyone.

The end of Ante Pre

Photo of Quinns' eye gaze computer showing him taking a selfie with two others

It’s the last week of school and Quinns has just completed his first year at nursery. When he started last September I wrote about him for the Teach Us Too blog. I mentioned the trepidation that the staff felt reading about Quinns but also how they then fell in love with my boy.

This is my thank you to all the staff who’ve been involved over this year because I really appreciate what they’ve done for him. I’m giving you just a little run down of some of the things that have been thrown at them this year.

Like me they’ve had to come to terms with lots of new equipment. They’ve had to learn how it all works, remember the silly names we’ve come up with for them, and even name some new ones ; the Mean Machine for the standing frame is my particular favourite!

Quinns has introduced them to lots of people with different jobs. More names and professions than the staff care to remember (and we can all admit that we don’t always know our occupational therapists from our physiotherapists but we do appreciate what they do for Quinns).

They’ve gone above and beyond the usual experiences of nursery teachers. Some have even been hoisted themselves while being trained in manual handling. And of course they’ve had to listen to Big Sister who’s been happy to help by pointing out where they’re not doing things quite the same way as me.

A few moments that really stood out for me during the year:

1. When the decision was made to sit Quinns on a teachers knee on the stage in the middle of his class for the Christmas concert. He looked so pleased with himself.

2. After a tiring morning at Bobath I arrived with Quinns, in my arms just woken from a nap in the car, ready for his class photo. I’d given literally no thought to how best to include him but the staff had that covered. The Mean Machine was a great choice and Quinns smiling face in the photo is a constant reminder.

3. Taking part in the races at sports day pushing the Bug didn’t appear in any job description but all the parents agreed that smile was so worth it!

So to all the staff; none of you had any idea what you were letting yourselves in for at the start of the year but I have to say I think you’ve handled it all really well.

For everything, thank you and roll on next year. I get the feeling selfies on the eye gaze for the TAC meeting was just the beginning of something very exciting!