I must admit I never thought I would ever be carrying Dinky across a car park to wheelchair services at the hospital. Then again, I seem to think that a lot when it comes to Dinky and her autism-PDA.
Opinions have been divided on whether or not I should have taken the doctor up on his idea that Dinky may benefit from a special needs pushchair. Luckily I went on my own to the doctors, when he did the referral, I can just imagine what Dinky’s reaction would have been to the word ‘pushchair’. Ever since the kids called her a baby over her wrist reins she has tried not to be a baby out. She very much believes she is an adult. Not that she knows anything is until other people say it is or she just thinks it is… Or even says it’s babyish, just to avoid wearing/doing/holding whatever it is. Ear defenders was the latest avoidance ‘baby’ thing. Until she realised they do actually help her.
So Dinky was referred to wheelchair services. At one point I got a phone call from them asking what type of chair she needed and for her measurements. It turned out Dinks had just past the 5 year age they deemed it acceptable to give a pushchair. So they asked if it was better to have self propelling or attendant pushed.
So I waited and Dinky was then given an appointment a few weeks ago. I took her 1:1 with us, and boy was she needed! It took 3 of us to get her into the room, then Dinky had a massive meltdown because she didn’t want to be measured, then she kept trying to escape, so she ended up bossing me around for the control.
They didn’t have anything suitable, so we went back last week to go pick the chair up.
As soon as we got to the hospital Dinky refused to walk and sat in the middle of the cafe. I had to pick her up and carry her across the car park to the wheelchair services building.
The lady was lovely, but the 1:1 was busy, and Dinky did NOT want to go in. So I had to carry her. We got in a room, this was a different room to the last time. Which unsettled her again.
Out comes the lady with this very narrow kids wheelchair, with bright pink frame. I could see Dinky liked it, but she wasn’t too impressed with the lady who kept telling her to get in it. Another meltdown, this time chairs were thrown, same hitting and hiding, not good.
It took a while but we got there in the end, and Dinky was the new owner of a reconditioned pink framed action 3 junior attendant pushed wheelchair.
Now a few things have instantly got better. Dinky doesn’t like the feel of shoes… She doesn’t have to wear them in her chair, less avoidance going out. I am no longer having to work out a non direct way of saying
– stay next to me – where should you be
– this way – I’m going this way
– stop running off- maybe you should stay with mummy
– don’t touch that- should you be touching that
– not in there- I don’t think that’s where you should be
– don’t lick that- oops (and pull her away)
I still have to think about it, but when I am tired it goes right out of the window, but we can actually venture out and not have avoidance or meltdowns due to demands to stay with me.
No more sitting down and refusing to move! This was by far the biggest issue we had with Dinky. If she didn’t want to walk any further she didn’t!
It is also amazing how many places are ‘boring’ to a six year old! The amount of dashes out of places dropping all items at the door as not to become an accidental shoplifter, was becoming unbearable.
No more running off buses because she doesn’t like strangers. As she doesn’t notice them because she is occupied in her chair in a more closed off part of the bus, there are not many seats in the wheelchair area.
No more running across roads! Now this is less frequent but is the most dangerous of her issues when out. Either she is running from something or she is trying to get somewhere and doesn’t understand that the cars won’t just stop for her.
Now we have a calm relaxed and happy Dinky out because she can sit in her pink chair (all other black bits have lego stickers on!), with her iPad on her weighted lap pad, headphones on… And she doesn’t care what we do!
Ok she cares sometimes. Especially today.
2 years ago was the last time we went to a hair dressers. We went to a place before her first day of school and wow! They cut her fringe so short it looked silly and the back wasn’t straight. They also poked her near her eye with the scissors.
Since then Dinky has refused and at points I have resorted to cutting her fringe while she has been sleeping!
Lots of preparation, lots of reassurance and today we went, with her chair to the hair dressers.
We walked in and there were three ladies sitting down waiting for customers. I asked for Dinky’s hair to be cut, and they started talking to her. Oops. Not a great start, as dinky then went all non-verbal grunting on us. Refusing to do anything and hitting me everytime someone spoke to her. Eventually we got her infront of the mirror in her chair. I had to pull the back down so they could cut it, but dinky was not having any of it, screaming tears, pushed away anything she could get her hands on shouting NO!
I almost gave up, but the three of them persevered, one distracted her by talking about Dinky’s lego stickers on her chair, another cutting and the other finding things for Dinky like lollies and pink things.
Eventually Dinky was ok with the cutting, but then just as the lady was doing the sides, dinks decided she has had enough… So more reassurance and more distraction. Then the fringe. This freaks dinky out due to the scissor incident, she went again, trying to push away, shaking her head,back to grunting ect.
Then once a little calmer they managed it. Dinky did really well.
The ladies were brilliant. Said when we are in town if we pop in and say hello Dinky would get used to them and then might be happier.
So we left…
It wasn’t until later that dinky realised that her hair was shorter at the back, she hadn’t connected the two things.
“I want it back!”
She then went on to say I could study magic like nanny plum. For those not familiar with Ben and Holly- Nanny plum is a fairy.
I told her that I wasn’t able to study magic there as I am not a fairy, but apparently all I have to do is shrink.
I told her I would then just be a very small human, still not a fairy, well, that didn’t go down very well either!
Another round of hitting and screaming.
But now she is happy with her iPad, in her room, melatonin taken and should be asleep in the next hour! But for now she is happy, and that is all I ever want.