Right now I really don’t like the word respite. I have less of a problem with the concept. Every parent needs some rest and relaxation.
We recently went to Center Parcs for the first time. It was a family affair to celebrate Opa’s birthday. I admit I was sceptical about the place. We resisted for a while but actually I was impressed by what they had to offer.
I’m not talking about all the amazing activities available for active families (if you’ve never been believe me there are a lot!) Really I’m just talking about it’s toilets specifically it’s Changing Place toilets.
There was a Changing Place Toilet in the main village so on arrival day we were able to change Quinns before we got to our house.
There was a Changing Place in the swimming pool so we could take Quinns swimming every day!
And there was a Changing Place Toilet in the Sports Centre so we could change him before we set off for home.
The right facilities meant that we were able to take a break and enjoy all (well some, there are a lot!) of the activities that a place like that has to offer.
Note: The high backed swing in the play park was great but it would have been perfect if they’d had an accessible roundabout!
I often describe Quinns as a thrill seeker. He’s always enjoyed going fast. As a baby we would swing his car seat fast to settle him. Now it’s the higher the better on the swing, the faster the better on the roundabout (I’m sure that’s why I’m so driven to get him an accessible roundabout).
When Best friend bashes the Bug into the wall at school all the mums gasp but actually Quinns has the biggest grin on his face (plus it’s his metal footplate that’s hit the wall not him). Best friend spends his time riding his bike. Learning to skid and doing wheelies. All risky activities but exactly what you’d expect from an almost four-year-old.
When you think about the rough and tumble that most children experience and enjoy, it’s important that we allow Quinns to experience as much of this as possible.
There is always a little bit of risk in everything we do. He needs to experience things like any child his age and learn his boundaries. He just needs a bit of extra help. We don’t want him wrapped in cotton wool.
Here’s Quinns holding the skewer toasting marshmallows over the fire. He’s doing exactly the same as Big Sister (eating too many marshmallows before bed!)
The best way to learn is to explore and he can’t do that if we over protect him. It’s our job to expose him to the same level of risk, safely of course, as his peers.
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.
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/
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.
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!