I’m so proud of Big Sister. The day she took her Brownie Promise she was given a book listing all the badges. She picked this one out and suggested her Brownie Pack do it.

They had to do a range of activities to earn the badge which included me going along to a session to talk (with the help of Big Sister) to the girls. I asked the girls to try communicating using the laminated picture boards Quinns uses. It was a great way to show them that talking isn’t the only way to tell your friends about yourself.

It was Big Sister’s suggestion to show photographs of Quinns using his equipment; Upsee, Splashy, Red Rocket Chair etc. All the things we have that enable him to do different activities.

We then asked the Brownies to write about or draw something that Quinns could use to help him do an activity. I was so impressed with all their ideas. A couple of girls even wanted to send him in a rocket to the moon because for them anything is possible.

And of course we couldn’t let them leave without introducing them to Quinns (who revelled in his new found fame) and then sent them home with a letter about the need for more Changing Place toilets.

These aren’t Big Sister’s swimming badges. These are Quinns’ swimming badges (much to her annoyance.) He’s earned each and every one of them. He’s attended the classes, he’s taken instruction and he’s learning to swim just like his friends.

Of course, some things are adapted for him. He’s had extra help and support but Quinns absolutely loves the water and is more than willing to take part (except when he’s flirting with the teacher or other people using the pool).

He’s learning to dive. Since he can’t sit unaided I hold him on the side of the pool. Someone else holds his hands above his head. He then moves his bottom forward and off. He goes under the water and when he comes back up he has the biggest grin on his face. He did it!

In contrast is his friend who whispers ‘I’m not doing that’ in her mummy’s ear as soon as the teacher issues an instruction especially when it involves going under the water. It may take him longer to actually learn to swim but hopefully Quinns’ willingness to go for it will help her get over her fears.

Happy New Year! I’m sure there have been many resolutions around books and reading lately. Quinns is a bit of a book worm. He has always loved me reading to him much more than Big Sister ever did.

He has very strong opinions about what book to read. From these two photos do you think he wants to read ‘The Squirrels who Squabble’ or ‘Beep beep brrrm! George’s noisy vehicle book’?

For a while it was nothing other than Quick Quack Quentin but now he won’t let me read that one at all! Next it was all about Thomas the Tank engine either Three Cheers for Thomas or Railway Race Day. Most recently we’ve been heading out on a bear hunt.

Trips to the library are fun. I hold up each and every book in front of him. His facial expression tells me whether or not it’s worth the effort checking it out. I’m fairly sure it’ll be Thomas again or something vehicle related but you never know!

As well as being really opinionated on book choice he’s also great at page turning. He hasn’t hit many of his developmental mile stones but I think his achievements went; smile, laugh, turn book pages.

Board books are easiest. I sit with him on my knee. I hold the book in front of us and put my finger between the pages when I’ve finished. He then flicks the page over. It’s one of our favourite activities together…as long as I’ve worked out which book it is he wants to read otherwise he’ll just shut the book!

 

 

 

In this final post before Christmas I want to say thanks to each and every one of you. This past year has been really stressful for us all. Working out where we needed to be and then packing up and moving along with everything else has been exhausting. We’ve had extreme highs and lows but you’ve all helped us reach this point where things will hopefully be more manageable.

We are planning some relaxing holiday time in our new family home over the Christmas break. Then we will be ready to take on next year’s challenges and I can already tell you there are going to be a few!

(Maybe by next Christmas there will be enough space in Santa’s grotto to let us in and not just have a wee peek!)

So thanks to family and friends who have supported us over the year. And thanks to you all for reading my stories. I really do appreciate you taking the time and hopefully you will appreciate why I feel the need to share this video as my final word.

Merry Christmas!

We love soup in this house. Whether it’s using up the produce grown in our lovely new garden or the excess veg ordered in the online shop (we’ve all accidentally ordered an extra cauliflower, haven’t we?)

Quinns is fed orally and for that we are very grateful. He has a few friends who are tube fed so we are aware of some of the issues that causes. His baby gag reflex has thankfully remained as he still struggles with some foods. Dry crackers and biscuits are a definite no but he can manage a humous sandwich on soft bread.

It’s great that he gets to experience different tastes and textures. Something we all probably take for granted. When we told him Quinns could manage fish and chips one doctor said “well life can’t be that bad then.’ Which is true as long as there’s tomato ketchup!

It’s the time it takes Quinns to eat that frustrates me most. I’m often left still feeding him at the end of mealtimes when everyone else is long finished. It’s really important that I do though because he’s had issues with weight gain. Big Sister gets really fidgety waiting for him so she can have pudding.

Soup therefore is my easy meal. It’s packed full of nutrients and with a bit of soggy bread or coconut milk, calories. And best of all it goes down quickly.

Now who wants cake?

After months of worry and with the strain on my back increasing every day I’m really pleased that our perfect house (although not a bungalow or a ramp house) did come up at the perfect time. And I have to say now that we’re here it is perfect. It’s everything I’ve ever wanted from a house.

It’s got four bedrooms including a big one downstairs. The open plan living/dining/ kitchen area is perfect for getting Quinns around and allowing him to be part of the action. The garden is beautiful, flat and full of produce for us to harvest (when we have a spare minute!) It doesn’t have just one attic it’s got two. It’s even got a hallway exclusively for board games!

I think my friends may be just a little jealous. I feel really lucky to have my perfect house at the perfect time. I wouldn’t change a thing.

The only problem is we’re going to have to. We’re going to need tracking hoists. We’ll need one that tracks along the ceiling from Quinns’ bedroom to the bathroom. In order to do that easily and as unobtrusively as possible we want to rework part of the downstairs. The space we have has lots of potential and it’s very do-able. There’s just a part of me that wishes we didn’t need to.

Anyway we’ll deal with that when the time comes. Right now I’m going to go back to enjoying my perfect house and garden and making my friends just a little more jealous. Did you see the shelves in my office?

As you can probably tell by now we are not big steps fans. Whether it’s the steps to our front door or the steps to access school they definitely make our lives very difficult. So ideally we need to live in a bungalow where steps would not be an issue. Sadly though as one estate agent said they are like gold dust in this area!

While I was trying to come to terms with the idea that we would need to move house I came across The Ramp House. Architect parents of a girl with similar disabilities to Quinns have designed and built a completely accessible house. It isn’t a bungalow though as it has more than one level and as the name suggests it is completely accessible by ramp! Their daughter gets the benefits and experience of different points of view by being able to get around different levels in their house.

I love it! I think the idea behind it is amazing. It’s so simple yet so effective.

It was only after I discovered the Ramp House that I thought maybe it would be ok to have a look and consider moving house. Sadly plots of land here are extremely hard to come by and also expensive unless we headed further into the countryside.

An alternative was buying a small bungalow or house and then adapting it to suit our needs maybe with a ramp or an internal lift. This really appealed to me as a designer and perhaps if we’d found the right house we might have gone for it.

However Quinns is at such a critical stage in his life I also really wanted to be available for him. I need my energy for all the therapies that he needs to make sure he becomes as independent as possible in later life (plus all the campaigning I’m going to need to do for him). Adding on a house build/adaptation project did not seem like the best plan for us at the time.

So what were the chances that a perfect affordable house would come up in the area we wanted with little or no work needing done to it?

I’m often asked about what school Quinns will go to. The answer is always that he will attend a “mainstream” school provided we can give him the right communication tools.

We quickly realised that we had an opportunity in our move to look closely at the local schools to see which one would work best for both Quinns and Big Sister. I visited all the schools in the areas we would want to live in to get a feel for what was available. They were all extremely good schools. If it hadn’t been for Quinns’ additional needs we would have been more than happy for them to attend any one of them.

Environment was the biggest issue we faced. All the schools I visited were in old buildings. One even admitted that it just wasn’t suitable because there were so many sets of steps to navigate. We know that there need to be reasonable adjustments made but with these sorts of difficulties and such resistance we decided we didn’t need the extra hassle.

Some issues were easily fixable such as disabled toilets being used as storage, he can use an alternative door that does have a ramp, a couple of steps here and there can be fixed by a little lift and upper floors can certainly be accessed by lift.

However, it made me think how much of Quinns’ short school day would be taken up being taken alternative routes and waiting for help to access the lift/s? Yes I’m sure all the children would love helping use the lift but what happens when it’s out of order? And fire drills. I’d need to make sure that the school had a way to get him out safely if there was a fire and I’d need to make sure that they were doing it even when there was not.

In the end it turned out that the school Big Sister attends actually has the best environment for Quinns. She pointed out that all the doors already have ramps. Quinns would be able to go through any door just like his peers. Maybe even his Best Friend will be able to push him out to play at break time!

Their classroom will never need to be on the upper floor which is a simple but effective solution. And it already has an adjustable height bench and hoist in place.

Given the right environment, one where Quinns is able to move around freely with his friends, we are then left to worry about his education just like any other parent.

I rarely miss an opportunity to go to the toilet so I’m not going to miss this opportunity to talk about them! Today is World Toilet day (19th November); a day to highlight the global need for sanitation and appropriate toilets.

Positive changes are being made for disabled people but it’s shocking that the number of Changing Places in the whole of the UK is comparable to the number of ‘normal’ toilets in Wembley Stadium!

We (and lots of Quinns’ friends) need more Changing Places like the one below to allow us to do everything from simple everyday tasks like food shopping to fun days out.

Big Sister is getting really fed up hearing me talk about Changing Places but it’s so important I won’t stop until they’re everywhere.

So if you want to help shut me up make sure you tell everyone you know about them. Check out shopping centres, supermarkets, parks etc to see if they’ve got a Changing Place. Most importantly if you haven’t already ask your MP to attend the reading of the Accessible Toilet Bill on 23rd November (the new legislation only covers Scotland and we like to visit family and friends in England sometimes too).