We’ve always been keen to travel. We never wanted to stay in the same place for too long. We had planned to travel with Big Sister and Quinns but once we got Quinns’ diagnosis and we had to move house we discovered that actually we are pretty stuck.

We knew we needed a house where Quinns would be on the ground floor and felt that it would need to be a bigger house. We didn’t think there was any chance we’d be able to afford what we were looking for in the area we were in. So we started to look in places all around us where it may be a little more affordable.

Each alternative area had its problems. In one direction the Council had no budget, in another the roads were too busy for me to be happy driving (I’ve never been a happy driver but I’m managing ok here and that’s essential for Quinns) and in the other directions we’re heading out of the commuter belt, which makes Dad’s life harder.

Even if we had decided to jump area there would have been enormous implications. The Professionals that see Quinns cover different areas. If we moved area we would have risked losing some or all of them.

Quinns’ NHS team are amazing. Each one has been working with him since the beginning. They can all see the potential in him and are keen to work together to do the best for him. I didn’t want to lose any one of them never mind all of them at the same time!

A switch in Council area would have meant switching all of Quinns’ equipment. Do we take the Standing Frame with us then hand it back or sort out a replacement and then send it back? I know it would all have worked out but it gives me a headache just thinking about the work involved.

So that left us with a pretty small area to look in which did have one main advantage. I would get to keep the support network that I was feeling pretty miserable about having to leave.

It took me most of 2017 to come to terms with the idea that we needed to move house. The steps (22 in all as Big Sister often corrects me) were becoming an increasing burden on my back. Eventually I came round to the idea that although I love our house maybe there was something better out there?

We each had things we wanted from a new house. Big Sister wanted a garden with a den and a cabin bed in her room. I wanted a good-sized kitchen and an office space to work. Dad wanted a space to play board games or at the very least space to house his ample board games collection!

So what does Quinns need? Before we even get to the house we need to consider the driveway which must be paved not stones. We need enough space for a WAV (Wheelchair Accessible Vehicle). Not something we have at the moment but definitely something we’ll have in the future.

Any access to a house will be easier than our 22 steps but we had to consider how that would work in the longer term. It had to be either flat or ramped. There had to be space to manoeuvre a full sized wheelchair both inside and out.

Eventually Quinns will need to be hoisted from his bed to the bathroom so he needs easy access to a bathroom and potentially his own. We’re told that a tracking hoist (fitted to the ceiling) is the best option for a small space which means no high ceilings.

He also needs a reasonable amount of living space to move around in. Then there’s his equipment; the Bug, the Red Rocket chair, the Standing Frame and the Squiggles pack all take up space. Not to mention the GoTo chair, the trays, the wedges, the Back Pack, the Upsee, the Splashy, the Deckchair, the physio benches, the Booster Seat…the specialist toys, the not so specialist toys…

We began to think we needed a bigger house!

Recently our time for fun family days out has been a bit limited. You could say we’ve been on a big adventure that required a lot of consideration (quite literally). Some of you will know but for those who don’t I’m glad to say this story has a happy ending. We HAD to move house!

I loved our house. It was big, it was central and it had so much character. But it was on the first floor. Big Sister counted the 20 or so steps so many times.

I cried when Dad said shortly after Quinns’ diagnosis in 2016 that we were going to need to move. I hadn’t thought of it but he was right. There was no way I could keep carrying Quinns up the stairs as he got bigger.

At first I told myself that the house itself was fine. It was big and had all the space we needed. We adapted it to bring Quinns’ bedroom to the lower floor. I liked that he and Big Sister were next to each other.

We looked into a stair lift and believe it or not it is possible to get external stair lifts, even ones that turn corners. At a huge cost of course!

Apart from the stairs there were other issues; the bath on the second floor, the noisy wheels for our downstairs neighbours, the high ceilings that make it too difficult to fit hoists, the lack of easy access private garden…

You may think it’s only a house but it’s not just about the house. It’s where the house is. It’s the local community, my friends, my support network, Big Sister’s school, the easy commute to work for Dad that lets him be available at the drop of a hat. We didn’t want to change any of these things but knew that finding what we wanted in the place we wanted wouldn’t be easy.

So the challenge began to find a suitable, affordable house that met the needs of Big Sister, Dad, me and of course, Quinns!

My holiday photos are probably very different from yours. I don’t imagine any of yours include a photo of your children in a toilet. Mine do!

I was extremely excited to see the Changing Place toilet logo in the service station at Annandale Water. When I see that symbol I see an opportunity to try out the facilities. After all I don’t know when I’ll get another chance to change Quinns.

Quinns is too big for baby change tables now and since he can’t sit unaided it makes changes really tricky. I need a changing place with an adjustable height bench so that I can change him safely for both him and me. Eventually I’ll also need a hoist to move him from chair to bench and back again.

I’m really grateful to the people who have been campaigning for around 12 years because more CP toilets are beginning to pop up all over the place. (I say all over the place but when we went on holiday the nearest one was the service station we stopped at half way through our journey. That’s not very convenient to say the least! )

If we want to be able to take Quinns on days out with his Big Sister there need to be CP toilets wherever we want to go. I’m going to email my local MP asking him to support the second reading of the Accessible Toilet Bill on November 23rd. Perhaps you’d do the same? The Ordinary Hopes website provides a template letter & a list of all MPs so it’s really easy but your letter could make a big difference.

Although Quinns’ physical capability is limited he doesn’t have ridiculous medical needs to stop him. That means at the moment we’re not too restricted in what we can do with him. (Once hoists and changing place toilets are required it’ll be a bit more challenging).

I’m so glad that this summer we were able to go on holiday with a big group of friends. There were 14 of us in total. 8 adults and 6 kids. Quinns loved the interaction with everyone and I think everyone loved Quinns!

There were day trips and boat trips. There was swimming and swings. There were car races and card games. All these things made Quinns a very happy little boy.

The highlight for me however was learning about the pill crusher. Quinns has a tablet he takes everyday for reflux. To begin with the pharmacy gave it to us as a solution but apparently it’s very expensive. As he needs it long term they switched him to a tablet.

At home we use a fairly hefty mortar and pestle to grind the pill in order to dissolve it. It’s a bit tricky to bring that on holiday though so we end up chopping it with a knife (bits flying all over the place) and then crushing it with a teaspoon.

That is until one of our friends spotted us and told us about an amazing pill crushing device they’d used for their child. We immediately ordered one and revolutionised pill preparation for ever. It’s small, lightweight and takes just a few twists to crush that pill to a powder.

This reinforces my feeling that we need to talk and share more. If we had hidden away we would never have found out about the pill crusher and I’d still be lugging a mortar & pestle around with me on holiday!

Sshh! Don’t tell anyone but Quinns is actually Spider-man. You may have seen his red & blue suit peeping out from beneath his sleeves.

Actually he wears a Lycra suit that’s specially fitted by Orthotics. It’s tight fitting so it gives him additional support. It has special panels that bring his upper & lower arms into a better position. The panelling brings him awareness of where his body is.

It’s an absolute nightmare to get on every morning and involves me quite literally pulling his arms & legs while Big sister tries to entertain him. The front & back zips make it a bit easier at the top. I’ve got a special technique with the arms where I get it on a bit then roll up the sleeves halfway before I pull it up to his shoulders. I then have to roll the sleeves down so I can do the zips up at his wrists. It’s a bit of a palaver and don’t get me started about changing his nappy when he’s got it on!

It does make a difference though so it’s worth the extra morning hassle. He’s a lot more supported. He’s so much stiller and I can see the difference in what he can do with his hands when he’s got it on.

Now I just need to persuade him that being Spider-man is actually a good thing!

We’re sitting in yet another park. The story of any parents life. The sad thing is we’re sitting watching with Quinns. Big sister can go and explore any of the play equipment but he can’t.

This park we’re in claims to be inclusive but we’re struggling to see anything that Quinns can go on or explore even with a bit of help. I want to know who thought the chosen pieces of equipment were suitable for everyone?

I know he’s physically very unable but he’s still a small child looking for experiences. Is it too much to ask that there be something for him? Would you accept that for your child?

I’ve already said that Quinns loves a swing. So yes he can go on a baby swing if (a) we’ve brought the GoTo seat with us and (b) he doesn’t keep growing. Also it’s a bit of a solitary activity. For my extremely cognitively able child it’s more about the social aspect than the physical one.

We recently visited a pretty good park. We took the hour long drive because we’d heard this newly opened park was good for wheelchair users and I’m keen to explore what works and what doesn’t work for Quinns.

You may have seen wheelchair accessible swings. I think they are great. They bring joy to wheelchair users of all ages. But they’re bulky, expensive and also pretty exclusionary with a fence around them. This one needed a radar key (more about them later) and only allowed one person beside the swing with Quinns.

The best piece of equipment by far was a wheelchair accessible roundabout. It had space for the Bug, seats & standing room. It meant that after we’d put Quinns onto the roundabout he was right in the middle of things. He was with other children & they were able to spin it so we could stand back.

That seems like the ideal to me. It doesn’t take up too much space even in the smallest of parks and it’s something all children no matter what their ability can enjoy together. I’d really like to see one in every park!

Have you spotted any great equipment in a play park? Next time you’re in a park take another look at how the equipment is being used and consider how inclusive it is.

We have never been in any doubt that Quinns knows what’s going on around him. From the first day she met him his speech & language therapist knew he was going to need an eye gaze computer.

In the summer we were lucky to have a device on loan for two weeks. It’s an extremely expensive piece of kit and although there’s legislation in place we still needed to make a case for having one longer term.

I worked him hard over the two weeks. He played games, spoke words (he especially liked to tell us he’s got a Big sister and likes swimming) and generally got used to the idea that he was in control.

Occasionally I left him to explore the screen, navigating around the various games and words. One day I left him while I made lunch in the kitchen. Somehow he managed to say ‘please help me, I want to play a game’. A total coincidence I know since he can’t read yet but still a beautiful moment.

Another amazing moment came when we were showing it off and he asked for a drink of water. Of course, I rushed to get it for him.

My favourite moment came when Big Sister was around. She was trying to help him play a game but instead of playing the game he just kept navigating out of it before going back in again. All the while he was giggling furiously, enjoying being in control, much to Big sister’s annoyance.

Eventually he navigated to the communication section. He looked at a number of words: funny, crazy, cool, awesome. Big sister asked him if he thought it was funny? He looked at funny then looked at the Rest button which stops it working for a moment to give him a break as if to say ‘enough said’.

I can’t wait to find out what else he’s got to say!

Quinns first week at pre-school nursery went very well. It seems he was really excited about starting as he woke up at 3.30am ready to start the day!

He was a little overwhelmed at first with everyone there to see him and all the new children he hadn’t met yet (being tired from his early start did not help either). He settled with his Best Friend by his side though and the comfort of his familiar SLT and Additional Support Needs Outreach person (ASN) to help him along the way.

By day two when I dropped him off he was met by a posse of girls who announced his arrival to the entire room as if a celebrity had joined them! So off he went ready to learn and be a part of it all.

His slightly disgruntled ASN (not really) told me it was tricky to get any work done with him as she couldn’t get near him for friends. I think she packed her bag when his Best Friend told her he was going to read Quinns a story. He’s got Quinns covered.

By the end of the week he had friends come up to him in the playground while we waited to collect Big Sister. Exactly how it should be when a child starts nursery. One little girl even told her mum how clever Quinns is because he can talk with his eyes. If that’s everyone’s attitude to him then I think he’s going to do alright!

A few people have asked me if Quinns was nervous/ excited about starting school nursery. The answer is I have no idea. I’ve not really considered this before either. Thinking about it now though we just live in the present with Quinns.

He is really good at communicating with us. He can tell us using facial expressions, sounds and body language what he thinks of something here and now. He can choose between options he’s given i.e. which t-shirt to wear or what he’d like to eat. But how can he tell us what he thinks about future or past events?

Weekly sessions with his speech and language therapist (SLT) teach him how to use his eyes to point at symbols. We have pictures and symbols at home that we stick to an e-tran frame to ask him questions.

We’ve been working on feelings including happy, sad and hungry for a while and we’ve recently added some bodily functions that may cause him issue. I want him to be able to tell me that he has a dirty nappy. I’m still hopeful that eventually he’ll be toilet trained and am already excited at the prospect of hi-tech toilets! But I’m perhaps getting a bit ahead of myself.

Right now communication is key. We are focusing on building up his lo-tech eye gaze skills. These have already proved essential for the eye gaze computer that Quinns will be getting soon. That’s right, a computer he can work with his eyes! Camera sensors use his eye movements as though they are the mouse. Not only will he be able to play games but he’ll also use it as a communication tool.

So hopefully with his developing eye-gaze skills and the tech available he’ll be able to tell us more than just he needs to burp!