At the mention of cake Quinns’ hand shoots up into the air! Cake and custard is his favourite pudding. The lovely soft texture and load of calories make cake good for him. He has a dairy allergy which adds to my challenge but luckily I have always enjoyed baking so I can control the ingredients.

Thankfully his reaction is not too severe. As long as I avoid all dairy in his diet his reaction rash has been kept at bay. Foods that declare themselves to be ‘may contains’ have been fine. That is not always the case for people with allergies.

The trickiest thing by far is when we’re out and about. We often have to search menus closely to find suitable meals for him. He’s started to complain when Big Sister gets something and he doesn’t. It’s the little extras, the ice cream or the chocolate given at a special meal, that can make a huge difference.

I’ve not found catering for him at home too difficult and with increasing interest in veganism it’s getting easier all the time to find substitutions. It just takes a little bit of research and creativity!

Note: For all the Upper Cut Cakes fans out there the photo is Big Sister’s carrot and ginger birthday cake. It was completely dairy free and the marshmallows were a lovely soft treat for Quinns. Most importantly though she was thoroughly impressed by its gravity defying nature!

The only book I’ve ever read about cerebral palsy is by the comedian Francesca Martinez. In it she reveals that her mum was very excited to be entitled to a blue badge after Francesca’s diagnosis. I have to admit I feel the same.

It’s great being able to park right by the door for Big Sister’s swimming lesson especially since it’s such a small, busy car park with the alternative up a big hill. On the flip side it does mean I’ve got to take Quinns with me to the lesson.

There’s nothing stopping me parking up the hill (and occasionally I have to). I’ve got perfectly good legs for walking. That said the Bug is heavier than a standard buggy which makes it harder to bump down kerbs and I also need to take a longer route to avoid the stairs.

What I really need from the disabled space though is the extra room that the yellow hatching gives me. I need to be able to open my door fully to give me enough space to lift Quinns in and out of his car seat without hurting my back. It’s getting trickier the bigger he gets.

I must admit I get annoyed when someone parks over them. Thankfully on this cold wet night I was able to get Quinns into the car without damage to me or the car encroaching my space.

 

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?