Buddy

The school playground is a great place for me to catch up with all the other mums. This is especially true now that I’ve taken on making our local play park more inclusive. It’s fantastic that everyone is helping and has snippets of information to pass onto me at every home time.

A few weeks ago I realised that while I was thriving Quinns was getting thoroughly bored. He was watching all the children playing at the other side of the playground. I knew where he wanted and needed to be but I didn’t want to leave the chat. Nor did he want his mum hanging around with him!

Big sister was an option but she takes on quite a lot of responsibility already and she may not want her little brother hanging out with her all the time! Best friend is still too small to push the Bug around without making all the mums nervous wrecks. No-one but Quinns is happy when he bashes the Bug into the wall!

I thought about all the children that are around after school and Buddy seemed like the perfect choice. He’s the same age as Big Sister and he’s been making Quinns laugh with his silly faces and pretend falling over for a while.

All he needs to do is push Quinns to where the action is making sure that Quinns is happy. Quinns’ Bug is not a toy to be pushed around or to have a shot and I’m sure Buddy will respect that.

Nervously we let Buddy take Quinns for the first time and within minutes they were off playing hide and seek with the others. Most of us mums relaxed into our conversations reassured by Quinns’ smiles as he flew past us every now and again.

Toilet training

More than a year ago we started to seriously consider toilet training Quinns. Our Health Visitor was our first port of call. She referred us to a specialist continence nurse who has specific experience in toilet training children with quad CP.

Six months ago we got our appointment. She agreed that it would be possible to toilet train and great that we were starting young (at that point age 3 and a few months).

I left with two tasks. Monitor bowel movements on the Bristol Stool chart for a week and arrange a suitable potty for home and nursery i.e. one with full back support and harness.

At our next appointment I handed over my chart and advised that our social work OT had found us a potty from store (the Purple Potty). We were just waiting for the extra bits e.g. head and lateral supports. The health OT would order the same seat for nursery.

At our next appointment I had to advise that once the bits arrived the original potty seat was too big and we were back to square one!

I’m not raising this as a complaint, more to show how much more complicated it gets once there’s a disability. In contrast Big Sister was fully trained aged two and using a toilet within about one week except for the occasional accident.

The next step for Quinns is to meet with a couple of reps who’ll show us what seats they have to offer. Quinns will get to try them out and we’ll be able to see what works best for the space we have.

Once a decision has been made (we may need to see more reps with different products) one will be ordered for home and we’ll arrange for the same to be ordered for nursery assuming it’s suitable for their space.

At least we are still moving forward!

I don’t know exactly how it’s going to work when we’re out and about but I do know that Changing Place toilets will be essential. There are just a few days left to complete the Scottish Government’s Changing Places Consultation. Please help make our life a little bit easier by completing it – https://consult.gov.scot/building-standards/changing-places-toilets/

In out, in out…

It’s easy to understand the reason for the sandals that strap Quinns’ feet into the Bug. Positioning is a major deal for him. He struggles to make more than one limb work at the same time. By strapping his feet down he can focus on using his arms.

The first time we had to do it was pretty upsetting. He was just one year old & we were strapping him into his Bee chair.

Now it’s not upsetting it’s more of a nuisance. It’s time consuming. When he’s at a party or playing with friends he wants to be a part of the action and I want to help him. Kids of his age move from activity to activity with speed. It’s challenging keeping up.

To get the best from an activity I need to think of the best position for Quinns. A tabletop activity or a running around one is probably better in the Bug whereas playing with cars may be out with me holding him.

The problem lies in activities changing too swiftly. I can sit on the floor for some time or he can sit in the Bug but when play changes I need to change position.

From Bug to floor involves unstrapping and a lift. From floor to Bug also involves a lift and then I’m often still strapping Quinns back into the Bug when everyone else has moved onto the next thing and if that’s back on the floor…

I’m not expecting kids play style to change but if adults are a little more aware then perhaps they can be more proactive on play dates and at parties.

Busy, busy

There are two people I haven’t mentioned here before but who are extremely important to us. I’ll call them Oma & Opa because that’s what we call them!

I wrote recently about the additional expenses we face having a disabled child. There are some amazing toys out there suited to Quinns’ needs however as soon as anything gets a special needs label the price goes up.

We want to maximise Quinns’ hand function. I’ve already said he has an amazingly good grip and he’s really good at turning book pages.

You’ve probably not given it much thought before but take a minute to think about all the movements you can make with your hand.

All those tiny movements that get us through every day are what we’re trying to help Quinns with through play. Busy boards are great for this. Different bits to get hold of, move, press, ring etc. Of course the special ones cost a fortune.

This is where Opa comes in. He’s made us two boards from stuff he had lying around. Great for Quinns’ little hands to feel and explore when he’s sitting with one of us or in his chair at the table.

When Quinns is in the car he doesn’t have a table but it’s a perfect opportunity for working on finger function. This is where Oma comes in. She’s made Quinns a busy blanket with some of his old clothes and bits & pieces she had lying around. It sits comfortably on his knee for long journeys and gives him something to do.

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Aren’t they all amazing? We’re very lucky to be able to use grandparents’ skills and in the process save some money. So massive shout out for Oma & Opa and all their talents, skills and support.

Magic hands

Quinns has an amazing grip. He loves to hold onto things. That was the case from very early on. I took him to Baby Sensory when he was just weeks old. He would get hold of the shaker and not let go. We would always be the ones making all the noise!

The thing he grasps has to be the right shape i.e. a spoon, a toothbrush, a stick, a magic wand. His soft toys all have long arms and legs for grabbing hold. Only now is he managing to pick them up himself but still only occasionally.

We’ve used various techniques to strengthen and improve his palma grip. We pass bouncy balls between us and he loves to open the various sets of Russian Dolls we have around.

At every opportunity I try to get him to hold things with both hands. A really tricky skill when you have constant movement.

We also help him practice the art of letting go. Often he doesn’t want to part with his spoon or his toothbrush but for obvious reasons he has to. If it’s a toy it may be ok. For a while I’d put his jacket (and even his gloves) on while he held something in his hand until I decided it would be good practice (and easier for me) to pass it from one hand to the other.

And finally after seeing a video of Lyla peeling carrots with her mum on her Facebook page I’m now putting his gripping skill to good use!

The Cruise Ship

Quinns & Big Sister playing together on the bed (The Cruise Ship)

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!

Build-a-bear

Big Sister with her new Build-a-Bear

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.

Time for a hair cut

 

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.

Quinns' long messed up hair

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?

Quinns with freshly cut hair

Party time?

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

Photo of books with an illustration of fish and the words

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.

Reasonable adjustments

Photo of tape measures across an architect's planHaving 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.