Friday, 30 December 2016

Years 1 and 2...

Mrs James was the most fantastic teacher ever...  and both Milly and I absolutely adored her.
Because she was the kind of woman who knew how to 'mother' people.
She was just what Milly needed.
And she was kind, and fair...  and her boundaries were clear.

And to top it all off?  The TA (Teacher's Assistant) was fantastic, too.
We simply couldn't have wished for better.

Excuse my language here, but I always used to say that Milly came with an inbuilt 'BS' meter.
(If you don't know what the BS stands for I shan't be the one to tell you, but in essence it simply meant that Milly had a finely tuned intuitive sense for when people weren't being honest).

I later realised however, that although that still seemed to be true, it may have had more to do with the fact that Milly coped better with people who were very much an 'open book'.
They are, after all, much easier to 'read' (facial expressions) and so you know exactly where you stand with them.

You see, girls with Autism struggle in social situations.
I've said it before, I know.
But I'm repeating it because later on you will see how this became more of an issue for Milly.
The older girls like Milly get, the harder it is to 'fit in' and be accepted.
Autism is exceptionally cruel like that.


...  So as you've already read, Milly had a fantastic, 'top rated' Year 1 experience.
No problems.
No nothing.

Yes, there were still tears at parties - but less of them.
And yes, it was still blatantly obvious that they weren't her thing.

However, there are two things that do stand out to me about Year 1, and they both happened quite early on.

The first is this...

Mrs James had given a three minute warning for 'Tidy Up Time' and made it quite clear that if you weren't ready in time you would miss some of playtime.
(I think that was the 'consequence', but I'm not completely sure I've remembered correctly.  It was a long time ago)!
Either way, there was an 'incentive/deterrent' of sorts in place to get all of the children to hurry up...
My beautiful, kind and caring Milly (she really was such a gentle little soul) chose to try and help someone else who was struggling - and so neither one of them was ready in time!
(If you've guessed that they both got 'punished' for being too slow then yes, you guessed correctly).
That was a hard life lesson for Milly to understand.

And the second thing?

A School Nurse came in to do an assembly on 'How to Wash your Hands Properly'.

Now this assembly involved visual aids in the form of a washing up bowl, some water, hand soap, green paint and paper towels.
The green paint was used to represent dirt and germs.

You wouldn't think that an assembly could have such a detrimental effect on a child, but for Milly it spawned the beginning of a 'germ phobia' that lasted for many, many, many long years.

You see, the School Nurse put paint on Milly's hands and told her to wash them.  Then she came back to check, and seeing some traces of green paint still present, declared that they were not clean and that Milly should wash them again and do a better job.

Nobody knew that we were dealing with a child with an Autistic brain, remember?
Autistic brain's do 'concrete' thinking - and what's more concrete than visually seeing that you didn't do a good enough job, being told that you didn't do a good enough job and hearing the horrors of what could happen to you if you don't wash your hands properly?

Poor Milly...
She washed her hands until they were red and raw for months afterwards and although we eventually got the hand washing part of the cycle under control, the horrors now imbedded in her thought processes meant she continued to struggle for a very long time.
This was manifest mainly by Milly having a complete and utter 'melt down' any time a fly was in plain sight (flies equal germ carriers in Milly's mind) - although other things would set her off, too.

Like I said, this lasted for many, many years.

There is one other tiny thing that I will mention, but in itself it's such a small thing that it's easy to overlook...

A school trip to a Toy Museum meant a coach trip to get there and back.
Milly was the only child in her class who couldn't do up her seat belt by herself - and she only realised the difference between her and everybody else when told by an exasperated teacher that she ought to be more than capable!  (...  and yes, she did struggle with seat belts in the car for many years, too).
It's just another tiny puzzle piece that I can now see pinpointed to her Developmental Coordination Disorder.

It's a myriad of tiny clues at this stage.  
Are you seeing that?


With another Winter at school under Milly's belt, a pattern of illness emerged that had us back at the doctors yet again.  I remember the doctor commenting on the dark circle's under Milly's eyes and sending us off to the hospital for some tests.

Thankfully, they came back as negative (he was testing for Cystic Fibrosis), but we still had a follow up appointment to go to at the hospital.

What I clearly remember is us waiting in the Waiting Room, sitting by one of those large wooden activity toys they sometimes have out for the young children to play with  (the kind with thick metal wires of different shapes and sizes, all threaded with wooden beads).
Another child came over to play with it - and Milly looked positively apprehensive and almost a little bit frightened of the other child.  We tried to encourage her to engage in play with them but it just wasn't going to happen!

We got called in to see the Doctor just then, got told Milly had seasonal Asthma...  and had a few years at home struggling with Nebulisers and Spacers (Milly's technique wasn't great) for a few Winter's after that...  and completely forgot about her reaction to that child or what it could possibly mean.


Playtime (and lunchtime play) in Year 1 were still held away from the main body of the school yard. That changed from Year 2 onwards...

Mrs Longero was Milly's Year 2 teacher.
She was as kind and as fair as Mrs James, but she came with her own set of rules.
There's only one that I really remember as it stood out to us from Day 1.
The pencils that were out on the side must always be put away with the leads facing the same way. Always...

I wonder now if perhaps Mrs Longero was on the Autistic spectrum - or the Autism spectrum if you prefer?  
It's not always that easy to tell...  not unless you get to spend time with and get to know that person. And don't forget, as Autism's a 'spectrum' disorder you can be on the fringe of it with no need for diagnosis.
It all depends on how it effects your day to day living...

By Year 2 it was obvious to everyone, including Milly's classmates, that Milly was a quiet member of the class...

There are quite a few things that stand out to me as I look back at this particular stage of Milly's life, but yet again, we had no one to clue the pieces together and tell us our daughter was Autistic.
Let's be honest, we had no alarm bells ringing in our own ears as although Milly obviously had her 'quirks', she was coping well.

...  The first issue I remember is that the School Nurse came back to do another school assembly, and this time the subject matter was 'Healthy Eating'.
(Now I don't condone filling up on cakes, crisps or biscuits but I do believe that, where food is concerned, a sensible diet is key with a few treats included from time to time).

My first clue that anything was amiss was when I offered Milly half a jam doughnut one day - and she said no but seemed to be struggling judging by the look on her face.
So I probed as to why and had the whole sorry story come tumbling out...

It took a few months, but eventually Milly got the message from me that the odd, occasional food treat was actually perfectly ok to eat.

But you see, back then she was still very open with us at home.
She 'masked' with other people, but not with us.
Not until she was much older, anyway.

Let me explain what 'masking' is before I go on...
It's an ability to control one's face, tone of voice, body language (the whole caboodle, as it were) to portray what you want them to portray or what you think other's want you to portray as opposed to what you are actually thinking or feeling.  But the difference is this 'charade' of sorts can go on for days, months, years even - and you may never know the real Autistic girl/woman or what she thinks/feels.

I'll put this into practical terms so it hopefully makes a bit more sense...

I could never understand why on earth school would never phone me to come and collect Milly when it was blatantly obvious to me that she was unwell.
Just one look at her and I would know.
I would even take her to school sometimes and tell the teacher's I knew she wasn't feeling too good but she was going to come to school anyway and see how she got on - and would they please phone me if she needed to come home.

They never did.  Not once.
Was it because she didn't tell them or because she was learning to 'mask'?
It seems to be an inbuilt ability that many girl's on the Autistic spectrum have.
Not all of them, but it's certainly a very common trait...

It wasn't until a few years later that I realised that Milly may have been 'masking' for them but not for me.  And as children like Milly get into their teenage years, 'masking' can become more multifaceted. In other words, who you are and what your perceived relationship with Milly is will be the factor that determine's which side/s of 'Milly' she chooses to portray.

But let's move on...

Mrs Longero made me aware that Milly seemed to be struggling with playtimes and lunchtimes, so we brainstormed together and decided that as Milly liked to draw, perhaps sending her to school with some colouring pencils and a small sketchbook might help.
This strategy worked for a short while (maybe a week or so) but as was often the case with Milly, it was a short term fix.
The issue, apparently, was that the other children were taking her things off her.
Milly didn't like that at all, so she chose to go without and carry on struggling.

I will quite freely admit that I have been an exasperated parent at times...
Until you know and understand Autism, there are just certain things that make no sense.
We're talking about a child who would come home from school saying someone had head butted her in the stomach, but as she didn't know if it was on purpose or not she chose not to 'tell'.
A child who went to a sleepover, somehow 'lost' the duvet cover and so was cold and didn't sleep all night.
A child who didn't seem able or willing to say 'no' and stand up for herself to the other children.

I know I keep saying it, but we had no clue that these 'issues' were all related.


Two more things stand out as I share with you about this stage in Milly's life.
I'll try and keep them brief and to the point.

The Nintendo DS.  Do any of you remember those at all?

We bought Milly one of these - complete with the 'Nintendogs' game...  and it became apparent that Milly had some issues around the Dogs 'dying'.
She couldn't quite grasp the concept that this was only a game and that the Dogs couldn't be hurt at all, or be hungry if she forgot to feed them.

We often joked that 'anything' with eyes was Milly's downfall.
Maybe having eyes humanized things for her?
Whether it was her soft toys or the 'Nintendogs', they all held a special place in her heart as though they were real.

...  There was just one other school issue that Milly struggled with at this time, and that was Maths.

During Year 2 Milly would often be in tears as she simply didn't seem able to fathom the topic. Luckily for her, Mrs Longero would spot what she referred to as 'Milly's puppy dog eyes' and go over to help her.

If only all teacher's were as kind as Mrs Toy, Mrs James or Mrs Longero...

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