Dinky, her new wheels and the dreaded hairdressers!

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.

Anyway…

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.

Now that is a special school!!!

Today I went with the social worker to see a school for Dinky.

It was AMAZING!

First we got a little lost on the way there, which wasn’t ideal.

Ow ever when we pulled up… Wow. The grounds were absolutely stunning. However, grounds do not make a school!

As we went in there were makaton signs all round the place so that everyone knew where they were.
We were met by the school nurse, who asked lots of questions and really put me at ease. Next we went on a tour of the school. Lunches are handed really well, there is an OT to help children with their cutlery skills (something that I am ashamed to admit I have pretty much given up on!), the classrooms are amazing with, calm room, separate room to do quiet work alone, and an outdoor area per class for children to have a movement break. I loved the fact that a child was doing all his work about minions and even showed us his little minion teddy. Work is not done in a traditional way, very PDA friendly.

The main sensory room, Wow! Dinky would absolutely love it in there! As she would also like the soft play room and the other OT/sensory room with swings and mangles ect.

The playground is a sensory seeker/impulsive-hyperactive child’s dream! They do lots of social skills work out on the playground and in peer time as well as having separate social skills classes (including lego therapy!).

Met the speech and language therapist, they do lots of sign even if the kids are verbal so that when they struggle to verbalise they can use it. Lots of visuals and functional language skills!

PDA is not currently known school wide, however this is changing this year due to one of the KS3 teachers having done a paper on staff knowledge of PDA last academic year. Already this has led to staff wanting to understand the condition for the students.

I think out of every school I have looked at- this is the first time I have actually thought would be the PERFECT place for dinky! There are no niggles, the staff are willing to work with her and do what is needed for her.

Within 2 minutes of being home I have requested a place for Dinky there via an email to the head of our area’s SENAT.

Wonderful!

Even had a chat with the social worker on the way home who is also going to email head of SENAT and tell him that this school compared to the school they tried to place her in is 100% better able to meet her needs! and now she knows why I wouldn’t send Dinky to the other school!

Feels so much better knowing that I have found somewhere. I would fight for this school for Dinky! I wasn’t willing to fight for any of the others.

To be a parent of a child with autism- PDA, and facing the ignorance of others

Most of the readers of this blog have a connection to autism. So you will know what I’m talking about when I say how frustrating it is for people with ‘typically developing’ kids to say ‘oh, no child likes change’, or ‘my child had a meltdown last week’.

I have to bite my tongue, because I want to so desperately say…

“You haven’t the faintest clue what you are talking about!”

Yes all children find change hard, especially young children. So Timmy’s first ever substitute teacher may have been hard for him, it is a big change.
My little one has had actual meltdowns (which are when the child can not cope and have an explosion of pent up emotion that can lead to physical violence against the people they love and care for the most- MOST DEFINITELY NOT A TANTRUM), all because I switched from Sky tv to Virgin media TV. The box is different, the TV guide is different, the remote is different. She actually will not touch the remote.

So yes, all kids struggle with change, but autistic children suffer more as they just can’t handle even the slightest change.

– oh so your child had a meltdown did they?
Did they stop when you gave in and gave them what they wanted? Yes… Then it was a tantrum! Stop using language meant to explain the behaviours of an individual that isn’t coping to a child having a tantrum!

It gets a little hard to take sometimes.

Even at our latest trip to legoland we had some ignorant comments about both Dinky and her friend when they struggled.
The reality is that because our kids don’t ‘look’ disabled, or because they walk and talk, people just don’t see their struggle.

I don’t know if it is just me, but when I catch someone lying about their child’s symptoms to get respite and support, it bothers me.
Especially when at one point this person said their child definitely had PDA, and now he doesn’t.

I WISH it worked like that.

I wish I could show her the reality of living with PDA. How everything has to be said in a non direct way. How life is all about walking on egg shells to avoid a meltdown because there are just too many demands in a day.
I wish that it could just stop like that, then I wouldn’t have to worry about what the future holds for my girl. How can a person who is demand avoidant cope in the workplace, as far as I know- most don’t. The ones that do, I am betting that they are the few that manage to coast by in school. Still it is no life for them, they coast, but struggle immensely. So work is just another struggle.

The reality is that having a child with autism is bloody hard work!

There are so many children with PDA that have to be home schooled because their PDA is so extreme they can’t even BE in a classroom.
I have had dinky home for 8 months, it is hard work, I have to be very sneaky in how I teach her so that she doesn’t fall any further behind than she already is. I can’t even ask her to write something because that would lead to her having a meltdown – NOT A TANTRUM.
She doesn’t cope well on public transport, but because I can’t work with her being at home, I haven’t got enough money to buy a car, or pay for the first year insurance, but I have taken the plunge to learn to drive. At least then it is one thing out of the way.

I have to watch Kaitlyn spin and rock when she is stressed out, she goes into her own little world where I can’t reach her and it is soul destroying.
I see the conflict in her when she wants to do something but can’t because of the demand to do it.

The pure ignorance of how upsetting it can be for parents to hear people use their children’s disability to get things they want is astounding. If she had said something like ‘my child has cancer’ people would be disgusted at the fact someone had caught her lying, but because she says ‘my child has autism’ people allow it, like that is a disability one can just lie about as no one can prove it with blood tests or scans. There is always ‘oh I know someone that had to fight for years to get a diagnosis’.

The thing is I’m not actually judging her as a person. Just this action and her ignorance around how hurtful it is to others to have people pretend to struggle like they do, or this person’s child to struggle like their child struggles. It makes it all seem trivial.

Which is why there are statuses on local debate Facebook pages with things like “Autism- is it an excuse for bad behaviour?”

These things really do anger me too.

The ignorance out there is astounding. It just serves to make our lives just that much more difficult.

Trying to work a way forward, and I think I preferred not socialising.

It is difficult to find a way out of this mess with education. I am so angry because had they finished her statement on time, then Dinky may have got a school place in a school that understands PDA for this September, but finding a school place for a 6 year old girl is really difficult, as some schools, especially independent/ non maintained special schools, seem to start from 7, because we all know, hit 7 hand that is when autism kicks in…. (Rolls eyes massively).

I’m starting to think the only way forward is to have her home for a year while I wait for her to be old enough to attend a special school that might understand her.
However both social services and education would have to get their fingers out and support us properly. Especially as I don’t know WHAT to try to do with her. We have been doing lots on animals and dinos but we can’t do that from home. I have to take her to experience it first hand. We have to go to museums, zoos, sealife ect, we can’t do it from books, it is not interesting and doesn’t grab her attention- she becomes really avoidant as the learning aspect and therefore the demand, is so much more obvious when doing book work or fact finding.

We can’t do animals and dinos forever.

Also I need help to meet the identified needs. She needs a sensory diet for me to follow, she needs help with her fine motor skills, she needs social skills lessons, and she needs help learning how to express her emotions in a safe way. I can’t do that. I am not trained, I am not am expert. I know dinky, doesn’t mean I know OT, SaL, and I am no teacher.

In regards to socialising, I have found far too many people to be fake, I also don’t see why anyone would lie to make out their child is autistic, nor do I get why people won’t say to peoples face what they say to others. Life would be far easier if people were honest.

It makes it hard to trust anyone.

I think I am better off by myself. No one can hurt me or lie to me if I don’t give them the chance to.

I just don’t get people!