Journey to change

In the beginning I cried because my baby was broken. It was difficult taking him to Baby Sensory because he wasn’t doing what the other babies were doing.

I persevered because I knew he was getting something from it. He was experiencing the sounds, the textures, the stories and all the amazing effort that was put into each class.

Although we stayed a little longer than most I also knew when it was time to move on. Quinns needed the next stage just like his peers.

I cried more when I realised we would have to move because our house had so many stairs. Even although I loved that house it didn’t work for our family and had to be changed. Now we’ve moved, our new house works for us all and we love it.

I’ve recently graduated from the Partners in Policymaking course run by In Control Scotland. It’s hard to describe what the eight month journey entailed. There were many many lessons but my main takeaways are as follows.

Quinns is not broken. My instincts were right, he was perfectly placed in that Baby Sensory class for the time we were there and ready to move on to toddler group when we finished.

Now I do nothing but smile about my beautiful boy and all the amazing things he’s doing. He’s part of our community. His smile spreads joy throughout the village. We really appreciate the efforts being made by everyone around to make activities more inclusive for him. In general, I feel like we’ve got this!

My challenge is in supporting Quinns’ inclusion with his peers while inaccessibility works against us.

I don’t cry about Quinns now but I still cry about stairs; how he can’t get to the places I want to take him; about steps that make it harder for us to access things; about non-existent or abused disabled parking; and about the lack of changing facilities. All of which restricts us.

The problem isn’t just ours to fix. Any one of us could need a wheelchair at any time and find ourselves excluded from many things we take for granted. Inclusion would undoubtedly be easier with better accessibility.

Quinns definitely does not need fixed but our inaccessible environment does and not just for Quinns but for everyone.

The end of Ante Pre

Photo of Quinns' eye gaze computer showing him taking a selfie with two others

It’s the last week of school and Quinns has just completed his first year at nursery. When he started last September I wrote about him for the Teach Us Too blog. I mentioned the trepidation that the staff felt reading about Quinns but also how they then fell in love with my boy.

This is my thank you to all the staff who’ve been involved over this year because I really appreciate what they’ve done for him. I’m giving you just a little run down of some of the things that have been thrown at them this year.

Like me they’ve had to come to terms with lots of new equipment. They’ve had to learn how it all works, remember the silly names we’ve come up with for them, and even name some new ones ; the Mean Machine for the standing frame is my particular favourite!

Quinns has introduced them to lots of people with different jobs. More names and professions than the staff care to remember (and we can all admit that we don’t always know our occupational therapists from our physiotherapists but we do appreciate what they do for Quinns).

They’ve gone above and beyond the usual experiences of nursery teachers. Some have even been hoisted themselves while being trained in manual handling. And of course they’ve had to listen to Big Sister who’s been happy to help by pointing out where they’re not doing things quite the same way as me.

A few moments that really stood out for me during the year:

1. When the decision was made to sit Quinns on a teachers knee on the stage in the middle of his class for the Christmas concert. He looked so pleased with himself.

2. After a tiring morning at Bobath I arrived with Quinns, in my arms just woken from a nap in the car, ready for his class photo. I’d given literally no thought to how best to include him but the staff had that covered. The Mean Machine was a great choice and Quinns smiling face in the photo is a constant reminder.

3. Taking part in the races at sports day pushing the Bug didn’t appear in any job description but all the parents agreed that smile was so worth it!

So to all the staff; none of you had any idea what you were letting yourselves in for at the start of the year but I have to say I think you’ve handled it all really well.

For everything, thank you and roll on next year. I get the feeling selfies on the eye gaze for the TAC meeting was just the beginning of something very exciting!

It’s not what you think

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!

Playing with fire

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.

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.