Yes autism can affect mobility!

Having realised that you can’t have a logical debate with people who love their ignorance and are determined to remain ignorant, and also, remembering that, you can lead a human to information but can’t make them think! I decided to write my reply to such a muppet on here rather than to him because I don’t think he would have cared what I wrote as he was determined to believe, as a lot of people do, that blue badges and mobility cars are only for people who are physically disabled and can not walk .
He wrote ‘autism does not affect mobility’ 

I however beg to differ (as do the blue badge team, the social worker, the DLA, the tribunal panel made up of a doctor, a lawyer and a care professional, other doctors, wheelchair services, and so on)! 

‘But she can walk’ 

10 out of 10 for observation skills in the obvious there! 

‘But she doesn’t look disabled’

Oh, because she isn’t confined to a wheelchair, but was only issued a wheelchair voucher to buy a special needs buggy by wheelchair services who are (excuse my continued sarcasm) obviously very open to dishing out equipment to those who don’t need it because the NHS is rolling in cash?

Autism is a hidden disability. Trust me when I say this, I would rather my child able to walk to and around places without having to stop, and sit on the ground and equally not put herself in mortal danger when she decides that she wants to go in a particular direction which happens to be across a road because she has absolutely no danger awareness when she has her mind fixed on something or wants to escape a situation.

A lot of people will assume Dinys propensity to sit on the floor and refuse to move as a stubborn act of defiance by a wilfully naughty child.

They could not be more wrong! 

I’d imagine 99% those reading this would have fallen foul to being so drunk that they were severely hung over the next day.

Imagine with that hang over you woke up in, and was made to walk through central London on a windy and busy Saturday. The bright lights hurting your sensitive eyes, the people so loud, cars and buses going past hurt your sensitive ears, the wind hurts your skin- walking makes you feel worse- no one would think twice about you saying you needed to sit somewhere quiet to regain yourself. 

The thing is, you got yourself that drunk, it is self inflicted and yet that is more acceptable and understood than an autistic child who was born with sensory sensitivities who experience this assault on their senses on a daily basis wanting to sit down and not moving.

Is it any wonder that my child is struggling to walk while her senses are being overloaded like that? 

That is also without the added issues of her severe demand avoidance due to extreme anxiety, and rigid and inflexible thinking. If she can’t go somewhere because she is anxious she will sit and not move and she can’t be bribed, or scolded into moving, she just can’t make herself do it. This again is NOT open defiance, but a scared and fragile child. 

To me and you, I am only asking that she accompany me to the shop to get milk and bread, but to her I am asking her to endure bright lights, people, changing temperatures (fridge aisles), loud music, and forced socialising with the till staff where she doesn’t always know how to respond. So she sits down refuses to talk and hopes that I give up and do not ask her to endure that.

The DLA and the blue badge team understand that this is not wilful naughtiness and understand this to be that at times, especially out in public, dinky is, to all intents and purposes, classed as virtually unable to walk in those moments- meaning she can physically do it, but at times can’t hence ‘virtually unable’ not purely ‘unable’.

Then there is the other side of the coin. 

Add impulsiveness and single mindedness, to a child who doesn’t understand that the rules also apply to them- what do you get? 

A child who frequently uses the times that she isn’t frozen with the sensory overload or demand to walk somewhere, to give me cause for heart failure as she walks or runs into roads before I can grab her and when confronted says things like ‘that was a pretty butterfly’ or ‘I was going to the shop’. She honestly doesn’t understand why I’m so shaken and scared and why I’m telling her off. To her it’s obvious she wanted to follow the butterfly or race to the shop. She doesn’t always understand that I don’t know what she is thinking. 

The DLA see this as a lack of basic human intelligence, danger awareness, this added to her meltdowns and refusal to walk in overload or anxiety attack, plus her impaired social skills, reasoning and understanding all come under the hideously named criteria of severely mentally impaired. 

So does her autism affect her mobility- yes! Yes it does and I will not be makde out to be a fraud for having a blue badge for her or parking in the disabled bays to protect her or to make caring for her easier.

But if it makes you feel better I generally let her sit in her in her special buggy and push her, so that she can have her iPad on with headphones and block out the sensory input around her which satisfies most people’s need to see a physical manifestation of a disability. 

Dinky’s school

Sometimes I get the impression, when they talk to me, that they don’t feel she belongs there, hence my last post on her school I made the point that this was the ONLY school that would take her out of the many on county and more out of county schools that were approached.

Yet IN school, they do the right things and are so PDA friendly in the class it is unreal! 

This is the right environment even if she is working at a level slightly above her classmates and talks much more than the average child in the school. 

It makes her feel safe and comfortable enough to do school work, which in itself is a minor miracle- she has done more work in 2 terms at this school than she did in 4.5 terms she was in mainstreams. 

When it comes to PDA most parents face a choice academics or child’s mental health. 99.999% choose the latter! I am not bothered if Dinky never gets GCSEs, if the only way to get her then is to push her and make her so anxious that she can’t cope with life. 

So there is no need for the school to bang on about her ‘potential’ (which is not much further than where she is now, and that is halted by her PDA). 

This week Dinky got star of the week for counting in twos. She made such a great effort she even got a postcard from her teacher praising her for her effort.

Most people with PDA don’t like praise. Dinky doesn’t mind it as long as it isn’t linked to compliance- I could praise her all day for her doing something nice of her own free will, but I would instantly regret praising her for doing something I asked of her! 

The school understand this, and all the certificates that paper my wall are for things Dinky herself has done without the help or at the asking of an adult. 

This means she is very proud of them- almost as much as I am proud of her for getting them! 

This school has made Dinky enjoy being there! Which is some feat for an education establishment! She told me she is staying in her class forever and then as an adult she will work in her class (while living at home with mummy).

So as much as they make me feel she doesn’t belong- they are precisely the right place for her! 

My job? I am my child’s carer

There is a new single parent forum where I live and I joined it for some solidarity. Yesterday a question was asked by the group admin who obviously felt things were a bit quiet 

How are you all finding back to school with childcare and school runs?

This is a little awkward for me, and I was thinking of not replying to this particular question, but I felt the need to show them that not all single parents have the luxury of finding adequate childcare and holding down a full time job. 

So I replied 

As Dinky’s carer, childcare isn’t an issue for me, and she goes to school in a taxi, which has been hellish because they didn’t turn up on the second day and have been varying degrees of late ever since

I’m so tired of the question: “so what are you going to do for work now Dinky is at school?”

Or hearing “now Dinky is at school, you can get a job and earn some money”

I HAVE A JOB!  I am my child’s carer

My list of duties while she is at school

  • Source respite 
  • Pay respite 
  • Pay Tax
  • File paperwork
  • Chase meds 
  • Chase referrals and appointments
  • Go to appointments
  • Go to regular meetings at school
  • Take numerous phone calls from school- from teacher once a week, from therapists – OT, SaLT, Drama and almost daily calls from the TA
  • Go to workshops to learn things I need to get dinky the correct support 
  • Research 
  • Making visuals
  • Relax

My hours of care (Dinky requires more supervision and more care than the average 7 year old)

School days 

  • 1am- 2/3am
  • 5/6am-7.50am
  • 4.10pm-9/10pm (sometimes later)

So I have a full time job! I am my child’s carer!

‘Inclusion and attainment’ meeting at school

Yesterday was Dinky’s ‘inclusion and attainment’ meeting at school. 

There was me, the teacher, the OT and the SaLT. 

Back when Dinks was struggling at mainstream I had to make a decision (not that I had much choice in the end mind), do I send her to a place that can challenge her academically, that she might struggle with because the focus is on attainment and progression at a near mainstream level and not progress much? Or do I send her to a place that is very slow paced and therefore she might be happy and learn more?

I opted for the latter, which is handy as that choice was taken from me when no school for ‘more able’ autistic kids would have her, and the ones that might have, she was too young for. The only school suitable for her needs that actually said they could meet her needs was the school she is currently in. 

Dinky has come on leaps and bounds there, not much academically, but she seems to have grown up a lot more since joining the school in January. Which might be due to her being in a class with more severe learning difficulties. Dinky has started to be like a sort of mother hen. 

Why do I bring this up? Well it seems that although they love having her there, they are always saying things which makes me feel they don’t think that dinky belongs there. 

While her education targets are still reception going onto year one/national curriculum, despite her being in year 3, she is still ahead of her class mates in pretty much all areas, and boy do they like to tell me this. Not that I want to hear it because the only reason Dinky is progressing is due to the low demand environment they are offering, and it isn’t like I had a choice- they were the ONLY school that would take her. The next school placement I felt I had to look at doesn’t take kids until they are 8, Dinky is still only 7. I also want to give dinky a longer placement, again we are 2 terms in and it seems like the point is being made that Dinky doesn’t fit. 

I don’t think they realise how difficult it is! How would they like to be made to feel that their child doesn’t belong anywhere? How no one was willing to take them? 

Dinky is bloody awesome! I’m sick of schools! I suppose that the fact she doesn’t have a severe learning difficult is a better reason not to fit in than the first school who made it quite clear that our economic class was not a fit! My dinky was worth 10 of any of their most stuck up kids! Not that it was a rich area of upper class, it was a middle class area. 

The point is there is no school that would be a match. Dinky is the epitome of the ‘spikey profile’- she is not wholey at any one level in any one area. Take her targets following the meeting-


Literacy- write the letters of the alphabet (which most kids do in reception)… Yet give the kiddo a book for 8/9 year olds and she will (mostly) read it really well! 

Numeracy- think about odd and even numbers and counting in twos.(this is reception going onto year 1 level)… Ok maths might be the exception, whoever thinks that ALL autistic kids are great with numbers hasn’t met Dinky!

Social communication (set with SaLT)- listen to others to have a conversation – they are well aware this won’t be one that is done easily! But they have stopped 1:1 speech and language because dinky can talk, and does so excessively! Some of it might be scripting, but she can make herself understood unlike one member of the class who has no functional speech. Plus she wouldn’t go to the 1:1 sessions so it was seen as not the end of the world that they don’t continue. She still has SaLT in daily small group sessions and as part of the class curriculum.

To think about what to do next. 

There was one that was basically let an adult help, and another was recognising when interaction was negative and move away, but I can’t remember how that was translated to child friendly one sentence targets. 

Her OT one was funny. Only because it shows how new she is to the school and hasn’t spent anytime with dinky or understanding her. ‘I will sit in my bottom on a chair with my feet on the floor so I can work at the table’, why? Because dinky likes balancing on the edge of the chair or kneeling on a chair, or bouncing or facing the wrong way. I think this is a huge mix of her conditions, but mostly the ADHD side. I’m pretty sure she falls off the chair on purpose to avoid the tasks, but the fidgety can’t sit still thing is the ADHD even when medicated. Again they are aware that this is not something that will be done easily. 

Yet give the kiddo an iPad and she can do pretty much anything! Using YouTube she has learnt how to set traps on Disney infinity and places them well. 

Yes there are some things Dinky is good at, equally there are something’s she really needs help with. Just because she doesn’t have a severe learning difficulty, doesn’t A) mean she is ready for mainstream B) make her really bright/clever. She is still 2-3 years behind her peers even if she is a year ahead of her classmates academically and ahead in terms of communication because she talks more. 

So don’t tell me she is really bright or really clever when my 5 year old nephew outstrips her writing ability and is already ahead of her progress in her current maths targets, and is so socially and emotionally past dinky he has asked if he is older than she is. 

I get it, dinky doesn’t fit in… Tough, they have to suck it up until she is old enough to go to a different special school that can meet her needs. this is the ONLY school, that COULD take her.