We finally got a new bed for Quinns. It’s always a thought when a wee one moves from cot to bed and a move to a hospital bed wasn’t in my original plan. It’s much bigger than the cot so it takes over his room and there’s no disguising it, it’s a hospital bed.

Quinns loves it though and what’s not to love. He gets to ride up in the morning and down at night.

Big Sister loves to climb in and lie down beside him. They pretend it’s all sorts of different modes of transport and have now affectionately named it The Cruise Ship.

Dad and I love it because it’s a space to change that’s height adjustable. Quinns gets to ride extra high when it’s Dad’s turn!

Quinns is much safer because there’s so much more room than the cot top changer. I can leave him on it with the cot side up while I wash my hands. He wriggles around trying to grab his soft toys.

None of my fears have come to fruition (I’m not even sure what they were now.) It seems it’s only as adults that we see the negatives. When Big sister’s Best friend saw it she exclaimed how cool and announced she’s going to ask Santa for one this year!

Big Sister got a build-a-bear for her birthday. We did the whole experience. I took her to the workshop where she chose her bear and it’s accessories then we went for lunch.

It was a special treat day because we left Quinns and Dad at home. While choosing the accessories Big sister spotted a wheelchair for build-a-bears and set her heart on it. Unfortunately it was outwith the budget for that day.

The wheelchair costs more than the initial bear (before you add in all the extra stuff!) She asks ‘Why does it cost so much?’ A very good question and one that I often ask myself in relation to equipment we need for Quinns. Put a special needs label on something and the price rises as illustrated by Alex from The Long Chain in her blog, The cost of disability

Hopefully absolutely essential equipment is available from the NHS or local authorities but I know there’s variation across the country. We’ve been lucky to have a lot funded for us and we can also afford some ‘extras’ like the Upsee and the Splashy but some aren’t so fortunate.

You could argue that the build-a-bear doesn’t ‘need’ the wheelchair but I think it’s great that Big Sister wants it to be like her brother. It all helps to ‘normalise’ wheelchair use so that’s got to be a good thing. This BBC news article recently described the benefits of toy wheelchairs.

Anyway in the end I agreed to match fund. She saved half from her pocket money then I gave her the rest. Otherwise she may have been fundraising for one!

The charity Scope are currently running a campaign about the extra costs faced by disabled people and families with disabled children. You can find out more from their website.

 

Imagine sitting getting your haircut. Whether you choose to chat or sit in perfect silence either way it’s pretty relaxing.

Now imagine you can’t sit without help. Any seat you sit in has a high back. The back of your head is constantly in contact with something. Add in involuntary movements and long hair and you begin to resemble comedian, Tim Minchin.

I’m really lucky to have a good friend who is a hairdresser. I give her a couple of week’s notice that Quinns needs a haircut so she can prepare herself.

She starts the cut with him sitting in ‘the blue boat’ chair. As with any three year old we use distraction to get him to move his head in the direction we require. At last resort a phone.

For the back of his head I put on the gown (I learned from my mistake the first time) and sit him on my knee. I hold his head as firmly as I can so that she can cut the sides and finally the little ponytail at the back.

It’s a pretty long drawn out process for such a little head. It requires an amazing amount of both strength and patience. It’s most definitely a two woman job but doesn’t it look good?

 “Diversity is being invited to the party; inclusion is being asked to dance.”

Recently I’ve talked about indoor play activities and I’ve explained a bit of law from the Equality Act 2010. I told you that the role play village worked well for us but when Quinns got an invitation to his friend’s party there we had to decline.

A huge effort has been made to make the play accessible. The town rooms are all on one floor and the doors are wide enough. The cafe provides food to cater for allergies which goes above and beyond what we’d usually expect.

However the party room is up a flight of stairs with no lift access. I wasn’t willing to carry Quinns up it for the party. Imagine if I hurt myself or Quinns on the way up or down. I can’t accept it now for Quinns’ future self (he’ll get too big to carry and what about the Bug?) nor for all the other children in wheelchairs.

It has been pointed out to me that the party room would only be used for a small bit of the day. However that bit is the party part of the party! I’m not strong enough (although I appear to be pretty tough) to sit downstairs in the cafe with Quinns while all his friends celebrate the birthday.

There is a reasonable adjustment that could have been made (the venue even suggested it to me) but when it came to it they said it wasn’t Quinns’ party. Although nothing could be done this time my friend and I both agree, the situation sucks!

Quinns was invited to the party and we would all have danced together but a physical barrier got in the way.

Having Quinns is a bit like running a small organisation. As well as my day to day caring responsibilities (feeding, changing, administering medicines) there are appointments; health (OT, Physio, Orthotics etc), equipment (chairs, standing frames etc) and education (SLT, eye gaze) and meetings (TAC (Team around the child), Staged intervention).

Sometimes there’s more than one appointment in a day and of course there’s always homework. It takes a certain amount of skill to ensure it all fits into family life.

Then of course there’s the paperwork. It already fills two lever arch files despite me throwing out general appointment letters and Quinns only being three years old!

On top of all that there’s no escaping the law. I find myself having to read legislation all too often. At the moment it’s the Equality Act 2010. The following are the sections that I am particularly interested in –

Part 2 Chapter 1 Section 6 defines disability as ‘a physical or mental impairment’

Chapter 2 Section 20 states ‘where a physical feature puts a disabled person at a substantial disadvantage in relation to a relevant matter in comparison with persons who are not disabled, to take such steps as it is reasonable to have to take to avoid the disadvantage.’ e.g a reasonable adjustment must be made such as ‘a) removing the physical feature in question, (b) altering it, or (c) providing a reasonable means of avoiding it.’

Part 4 Section 36 ‘A duty to make reasonable adjustments applies to—
(a) a controller of let premises;
(b)a controller of premises to let;’

So basically if you run a business whether in leased or owned premises you must make reasonable adjustments for a disabled person i.e. if there are stairs you must provide a lift or a suitable alternative that does not involve the stairs.

And all that law was just in order to be able to respond to a party invitation!

Dedicated to Professor David Lessels who taught me so much.

All parents love to hate soft play. It’s noisy and chaotic but it’s a great place to let kids burn some energy giving the adults half a chance for a chat.

Like the play park though soft play doesn’t work for Quinns. I do my best but I often can’t manage to lift him over it all which leaves him watching from the sidelines yet again. I haven’t come up with an easy fix so instead I’m looking for alternatives.

The latest trend in children’s indoor play works much better. Role play towns are popping up all over. Basically there’s a bunch of little rooms with dressing up clothes and props for the children to explore.

Quinns has a lot of fun trying on different hats to become a postman or his favourite paw patrol character, pretending to order food in the cafe and having his eyes tested at the opticians. It’s a great way to have fun with his friends.

Bowling is another surprisingly inclusive indoor activity and has become a family favourite. I was sceptical when Dad first suggested it but the Bug fits perfectly under the kids ramp. We set it all up and then with help Quinns pushes the ball. Last time he even managed a strike!

I’d love to hear from you about soft play places you visit and of other indoor play activities that you think might work for Quinns.

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.