Year 3 - When it all went so horribly wrong...

This was the year our lives fell apart, and to be perfectly honest with you I really didn't think things could ever get any worse for us than they did back then...

(If you've read my 'About Me' section on my craft blog you will have already read some of this).

Within two months of starting Year 3, the entire class had a really nasty virus that knocked Milly for six.  It took more than two weeks for her to fully recover, plus an extra trip to the doctor who informed us her glands were up.

Once back at school, Milly was having more time off than ever as she seemed to just go from one virus to another.
But other than that, she initially seemed to be coping well with a new teacher who was very different to those she'd had in Years 1 and 2.

I think it was after Christmas when the problems began.
Scratch that.
I should really say that the problems began from Day 1 of Year 3 and simply went undetected for a while...

You see, Year 3 meant a change in lunchtime provision in more ways than one.
Milly now had to contend with being part of the larger playground that housed Years 3-6.
With two parallel Year Groups per class averaging around 33 pupils each, that was a jump from around sixty six pupils to two hundred and sixty four.
Yes, this large group was spread out over two play areas with a slope or steps from top to bottom, but nevertheless that's a huge increase in volume - both in terms of bodies and of noise.

For an undiagnosed Autistic with undiagnosed Sensory issues, this was a living hell.

And to make matters even worse?

Milly stopped eating her lunch at school.
She was never a good eater anyway, but at least before she used to have some of her food.
But now it was nothing.

Milly told me that the new food hall she now had to go to (which again held an increase in numbers of children) made her head hurt...  and the food smells made her feel sick.
I do remember having a chat with the senior member in charge of lunchtime's and explaining that, given the circumstances, I felt I had no option but to collect Milly every day and bring her home to eat.
This gave us about a twenty minute window at home before the quick five minute walk back to school.

Of course, school were not happy that I was doing this.
I wasn't 'towing the line' like the other parents and Milly was, in their eyes, missing out.
But if she was your child and not eating...  Your child forever coming down with some virus or other and you had the option available to you as you weren't working and lived close to the school, what would you do?

School also weren't happy with me as I didn't give consent for the Swimming Lessons that started in Year 3.
It was blatantly obvious to me that Milly wasn't coping (she didn't have the support of a supportive teacher this year either) and I didn't think that adding Swimming Lessons into the mix for a child who still struggled to dry and dress herself was a good idea.
If you read on you will soon see why...

You see, in conjunction with the above, Milly also started swallowing air - and if you swallow lots of air you burp a lot.

Poor Milly found this embarrassing and didn't want to be 'told off' at school for bad manners or to have any other undue attention from her peer group because of it.
(At this stage she very much wanted to be the 'invisible' child at school.  She couldn't cope with the attention of raising her hand in class as it was).

She also began doubling over in pain every night after eating her evening meal...

So evenings became this constant nightmare of persuading Milly to eat, followed by her clenching her stomach and crying and screaming on and off every night for about three months.
I was often up with Milly 'til one or two in the morning whilst my poor husband tried to get some sleep before he set off for work the next day.
And on so little sleep (four or five hours per night maximum), my poor Milly still had to contend with going to school...
She cried more than once when I had to take her back for the afternoon sessions (after bringing her home for lunch), and it absolutely broke my heart.
But I didn't feel I had any choice.

I remember once, just once, Milly came home from school and she completely 'lost it'.
She cried and she screamed about how much she hated going there...  and when that was all over she just sat still on the sofa and stared at the TV - so quiet and eerily still that I was genuinely worried for her.
I remember wrapping her in a blanket and giving her a soft toy for comfort.
Then I went upstairs with the phone to book an appointment with the school.

Needless to say they didn't take on board what I was saying and were more concerned with her missing out on her education...

I remember confiding in Milly's Year 1 teacher one afternoon and being told that I should 'be careful' about how I handled the situation with the school.
So I didn't push things any further.
But even she could see that Milly wasn't happy in Year 3.  She told me so herself and said 'it's written all over her face'.
And I very much doubt that she had had much contact with Milly.
Yet she who hadn't taught Milly since Year 1 saw what was so blatantly obvious...

Numerous trips to the doctors followed during this time, followed by a referral to a Consultant who dealt with stomach 'issues'.

I remember us having one appointment with the Consultant with a follow up to go.
Milly was basically prescribed some tablets to take and I was told to keep a food diary...

***

We went back to that same hospital a week or two later - only this time to their Accident and Emergency department.
Why?
Because Milly was getting so progressively worse every evening that, one night, we felt we had no other option...

And it was there, at the A&E department, that we were told that Milly's pain was the result of her nervous habit (air swallowing).
My husband and I were incredulous and more than a little sceptical that so much pain could be caused by 'nerves', and we were unduly sent home...

...  And then a week or so after that we called out the emergency doctor...

Five minutes with us and a quick look at Milly was all it took before we were told that our best option at this stage was to get Milly admitted into hospital.

I don't remember much of what happened next, but we drove to the hospital and waited.
And after what seemed like many hours a cannula was inserted into Milly's hand as she was admitted on to the Children's Ward for observation.

I will say just one thing here that I want you to remember as you read on...
This was a dedicated Children's hospital that we were in.  
Not some run of the mill general hospital.

...  Milly wouldn't eat the hospital's food either and started 'throwing it back up'.
And after five days of no food her Blood Sugar levels dropped so low (2.6) that she temporarily couldn't see.
Of course, that was the day after I'd had a full on Melt Down in the hospital...

Because of that Melt Down, I took some time out for myself that morning and sat at the end of the corridor - convinced I would see if Milly came out and needed anything.
But I missed her coming out of the room to use the toilet and that's when she temporarily lost her sight.

No apology from the staff.
No nothing.
Just an excuse as to why they had allowed it to happen...
A Dietician came along later that day and prescribed Milly some Milkshake supplements.
Fortunately for us all, Milly liked those...

I could go on into every detail I remember here, but the upshot was this...
The hospital concluded that Milly only presented as 'in pain' if I was in the room.
So the staff made me go home one weekend and leave her in the care of her Dad.

They also chose that particular weekend to move Milly out of her isolation cubicle and into a room with three other teenagers.
And her grandparent's also came down for a visit...

They chose that weekend to monitor her without me around - having changed pretty much every other parameter imaginable, and based on their findings but kept totally secret from us, the hospital concluded that I was emotionally abusing my daughter.
It's what they used to call Munchaussen's Syndrome by Proxy and now call Fabricated or Induced Illness by Carers.

All we knew at this stage is that we were suddenly being more carefully monitored and were not allowed to leave the ward with Milly for more than twenty minutes at a time.

A two hour and forty five minute meeting about a month later is when we found out...

***

My husband came home one Friday night to find a letter telling us we were due to attend a Child Protection meeting within the hospital grounds that following Monday.

And at that meeting, all but one person was pointing the blame squarely at me...
...  and my husband was accused of being 'complicit' to my actions.

In a nutshell, we were given no choice at all but to agree to having Milly moved to their Psychiatric Ward - it was that or they would pursue court action and do it anyway.

They pretended it was to get to the bottom of things, but having read through the paperwork we obtained it's quite clear that they thought having Milly on that ward would give them all the proof they needed to damn me and my husband for sure.

But instead of that, here's what happened...

Within the space of one very short week, the Unit that Milly was forced on to concluded that she was Autistic and that all of her actions could be explained as a result of her up 'til then undiagnosed condition.
It took them a further few days to get Milly formerly assessed and diagnosed, but even after that she still wasn't allowed to come home because of the stipulations put into place by the unwarranted Child Protection Plan.

You see, a Child Protection Plan has a three month long duration that's 'set in stone' before review, and it was only because another patient on the Psychiatric Ward began 'acting out' - thereby making it an unfit place for Milly to be - that we were eventually allowed to return home.

But even then, the Child Protection Order still remained until that review meeting.

Can you even begin to imagine what it was like for us to take our daughter back to school, knowing that the only information they have is that you are a suspected child abuser?
There are no words, let me tell you...

And as for how long this ordeal lasted?  Well, from the day Milly was admitted into hospital until the day we were finally all allowed to leave it totalled just shy of three months.

We all came home as broken, traumatised people.

And my beautiful, kind and oh so gentle Milly wasn't Milly any more...

Years 1 and 2...

Mrs James was the most fantastic teacher ever...  and both Milly and I absolutely adored her.
Why?
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...

Early School Years/Reception...

I can't pinpoint exactly how I knew because I simply don't remember, but Milly hated Reception...
and I mean hated to the extent that I would tell her how many days she had to go before she could have her next school holiday.
(Yes...   I am aware that at her age a count down of days probably wasn't that concrete a concept for her to gauge, but it seemed to help and there really wasn't much more I could do).

It may have been because the class size effectively doubled in size again.
Not literally this time, but with an open plan classroom layout that housed both classes overlap was inevitable.
Or it may have been playtime and lunchtime with double the amount of children that was to blame.
Or just yet another new regime and a new teacher and TA (Teacher's Assistant) to get used to...
I don't know..
Probably all three and many more.

***

Milly made friends with a child named Zosia that year.

Zosia was the first child that Milly particularly single out as friendship material and initially things went well.  Milly went to play at her house with a small group of friends and later, Zosia came to our house with her mum.
I remember Zosia's mum telling me what a delightful and well behaved child Milly was in comparison with the small handful of other children that went to play that day.
By all accounts the other children were all jumping up and down on the chairs...  but not Milly.

But then one day Milly came home from school and told me that Zosia had grabbed hold of her and hurt her arm...

I spoke to the school about it.
And I spoke to Zosia's mum.
And I had a meeting at the school about it.
It didn't end well...
Both school and Zosia's mum were convinced nothing had happened, but Milly wasn't a liar - it simply wasn't in her nature.

In hindsight (I'm sorry, you are going to get sick of reading this phrase, I'm sure) I suspect that Zosia meant no harm at all and was probably just far more heavy handed that Milly could cope with.
But all I knew back then was my daughter was upset and nobody believed her.

The joys of parenting, hey?

By this stage, parents were also inviting children to their child's birthday parties - and there were a lot of parties all closely grouped together - between November and December especially.
Every party seem to last around the two hour mark...  and that's when I found out that Milly struggled with them...

If you've read my 'About Me' section on my craft blog you will know that Milly loved the party bag you got at the end of the party, but two hours was far too long for her to cope with.
She would inevitably be sitting on my knee and crying for about the last half an hour or so.
Ball Pits were not her 'cup of tea' either, but even those parties that did something less 'energetic' still had her in tears back then.
Sometimes life can be just so very, very unfair...

***

This was also the year that my mum died.
Diagnosed with Leukaemia a week before Milly's second birthday, relapsed a week before her third birthday and died March 11th when Milly was four years old.

We would often drive down at the weekends (an hour there, an hour back) to see my mum...
and we always reiterated to Milly that Nan wasn't well so she had to be a good girl.

Milly didn't disappoint us at all.  Not even once...

Early School Years/Pre School and Nursery...

Mrs Toy's Pre School...

Yes, she really was called Mrs Toy.  And as I have no intention of telling you where the preschool was I think it would be a shame to change such a fabulous name, don't you?
Besides which, she's not an integral part of the story...

This particular pre school (like most in our area) was used as a 'feeder' school.  By that I mean you start off in the safety and confines of it before progressing onwards into the main body of the school. Milly wasn't actually ever going to go to this school though.  I took her there because they had an intake of pupils two terms ahead of the school she was going to go to and I wanted to get her used to the idea of being away from mum.

Milly actually really seemed to enjoy going here every afternoon.  The intake was small - 12 pupils in the morning and 12 in the afternoon.
Not a lot of significance happened in these two terms, but a few things do stand out...

Firstly, Milly started poo smearing (apologies if you are eating or about to eat).  This phase didn't last for long at all - I think about a month maximum, but if you do a quick search online you will see that it's quite a common indicator for those who may have Autism.
I wish I had known that back then.

Secondly, everyone who worked at the Pre School quickly learned that Milly had to be given her apple before everyone else as she was such a slow eater.
At least that was consistent with her behaviour at home!
...  I remember Milly coming home from school one day, telling me that someone had told her she shouldn't be eating the apple core as well as the apple itself and I remember wondering how on earth she couldn't know that already?
But you see, I only ever gave her two or three apple slices at home.
I had tried a whole apple with her initially and she made such a small inroad into eating the thing that it just didn't seem worth the waste.

And thirdly...  It was raining on the way home from school one afternoon and I gave Milly an umbrella to use that I had just bought for her.
She couldn't hold it above her head - neither then or for many years afterwards.
(Autism often has other conditions that coincide with it.  For Milly, this eventually got diagnosed as Developmental Coordination Disorder - formerly Dyspraxia.
This condition only got diagnosed as part of her Autism diagnosis).

What also became apparent after starting Pre School was that Milly was a 'germ magnet'...
and by that I mean that pretty much any and every illness that was going around the class would find its way to her and make her ill.  
I think we single handedly kept Calpol (a toddler brand Paracetomol medication) in business for many years whilst she was ill at home, normally with a high temperature.

***

After two wonderful, happy terms at Mrs Toy's Pre School (where Milly learnt about 'Clifford, the Big Red Dog' and 'Toffee, the Cat') it was time to start at Nursery - the name given to the Pre School at the school we had chosen for Milly to attend.

Milly still went to the afternoon sessions...
but now the class size had leaped to thirty pupils and this nursery was spread over three rooms as opposed to just the one.

At our first parent's evening I remember the staff telling us that Milly wouldn't go into the other rooms.  Not one of us thought anything much of it...  but again, with hindsight, this is such an indicator for Autistic behaviour.
(Boys with Autism often react differently to girls with Autism in social situations and because so much less is known about girls on the Autistic spectrum we were clueless to the subtle signs that were beginning to stare us in the face).

This was also the time when her phobia of foxes started...  and the night terrors.
To this day I haven't a clue what set this off in her head - but I suspect something at nursery was to blame.
What I can tell you is that this fear lasted for years...  and it included many broken nights sleep.

***

I know I've undoubtedly said this before, but I so wish I knew then what I know now.
I also wonder if Milly would have coped better if we had kept her at the smaller school with a smaller pupil intake.
We chose the bigger school based on its OFSTED (Office for Standards in Education, Children's Services and Skills) results.

Like I said, the joys of hindsight...