I prefer to stay positive about Quinns. I focus on what he can do. How amazing that he understands, communicates, eats solid food and experiences the world around him. Everyone who meets him falls in love with his little character almost immediately.

The one time I get down about it is when I have to fill out the form to get his Disability Living Allowance (DLA). He gets high rate because basically he needs 24 hour care. He literally cannot do anything for himself. Having that pointed out to you and having to go over it multiple times is heartbreaking.

I remember so clearly the first meeting I had about it. I had to go through a list of milestones and say whether he had met them. My positives (smiles, laughs) very quickly turned to negatives (can’t hold his head up, can’t sit unaided, can’t weight bear.) It reduced me to tears.

After that it was awarded for 18 months with a review to add mobility after 1 year. When that review came there had been little change in my answers and of course mobility was added. So why then did I have to complete the same form again with the same answers six months later?

There is currently this petition to prevent parents of children like Quinns having to complete DLA forms so often please consider signing it.

I mentioned in my last post that Quinns has an allergy to dairy. That means he can’t have milk, cheese, yoghurt or cream from a cow or other animal i.e. goat (the proteins are similar).

We successfully challenged his tomato allergy last year which has made life a bit easier. Imagine trying to order food in an Italian restaurant for Quinns – no cheese or tomato!

Given everything I’ve told you about Quinns’ eating habits you would have thought I’d give up trying to feed him pizza. Not me! It just made me more creative. I’ve discovered that there are endless options out there beyond the traditional cheese and tomato.

Pizza Express was the first restaurant we tried that had vegan cheese and allowed us to order a tomato free pizza for Quinns. Now that they have a dairy free carrot cake dessert it’s one of our favourite places to eat.

We also enjoy making our own pizzas together. Big Sister loves weighing out the ingredients for the dough and then Quinns can have a little go at kneading (in reality I measure out the water to add to the packet mix and then the machine does the kneading!)  Then they get to choose their own sauce from dairy free pesto, beetroot ketchup or tomato sauce and a wide range of toppings.

I finish them with appropriate cheese. Lots of violife pizza cheese for Quinns to make sure it’s soft and easy to eat.

Everyone’s happy with their own individual pizza that we can all eat together.

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?