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.
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.
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!
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.