Wednesday, 24 August 2016

Where to start?

I was going to jump straight in with Milly; explaining what she has said and done, but in hindsight I think it would make more sense if I started right at the beginning...

But before I even do that, I think that first you need to know just a little about me.

You see, I've had problems with certain foods for a very long time...  but probably didn't really notice until my early twenties.  But it's no big deal.  Certainly not worth seeing a doctor over. Just don't eat that food.  Easy.
Except that as I got older it got worse.  And it wasn't obvious anymore which foods were causing the problems.  Heck, it wasn't even obvious a lot of the time that it was the food that was the problem.
All I knew is I was desperately tired a lot of the time.  The kind of tired that sleep doesn't cure as I often woke feeling worse than when I went to bed the night before.  Lots of headaches, dizzy spells, nausea.  An upset stomach that could kick in within twenty minutes of me finishing a meal.  Bloating. Sore eyes that Milly used to refer to as 'Moley Eyes' because I couldn't open them properly.  Facial swelling, wheezing...  the list goes on.
On the plus side, at least I never had all of these symptoms at the same time.  Different foods trigger different symptoms.

A referral to an immunologist lead to the conclusion that I had 'Idiopathic Angioedema'.  I was told which foods, medications and even which toiletries to avoid.  I tried that for a while, but except for the headaches I continued to get worse.  So I did my own research and realised I had something called 'Histamine Intolerance'.  So I phoned the GP, got referred to a dietician for advice and was promptly placed on an exclusion diet that saw me drop even more weight off my not very large frame.  But at least the diet confirmed what I already knew.  The problem was reintroducing foods one at a time (which is what you have to do) meant that my weight dropped to an all time low of 6st, 2.6lbs...  and at 5ft, 2" that was too low.

No bread, no cheese, no ketchup, no gravy.  No more sandwiches.  No more soup.  I miss the convenience of the one and the taste of the other.  Truth be told there's a whole long list online of foods to avoid for sure, foods that might be problematic and foods that should be ok.  Except those lists are only guides as each person has their own threshold of tolerance and not all foods will/won't cause you a problem.  And to further complicate things...  the older the food is the more histamine it has, menstrual cycle/hormone changes exacerbate symptoms and so does stress...
And as all foods contain histamine and the actual process of eating/digesting food releases histamine...  let's just say it's been a bit of a minefield to say the least!

So I wasn't having the best time of it anyway.  I had been that badly symptomatic for about a year. Perhaps if I'd been well I would have noticed something was amiss and prevented things from spiralling so badly.  Perhaps...  but my Husband and I really thought we were just dealing with the moods of a teenager. Milly was 14 years old, after all.

The problem with Histamine Intolerance is the same as the problem with Milly.  Not enough is known about it.  If it was, we may still be where we are now...  but at least Milly would be getting the help she needs.

So why mention any of this?

There are two reasons why...

Firstly,  I was more cranky than usual at times and Milly doesn't like it when I'm cranky.
You see, there are just certain foods that disagree with me so badly that the side effect is me getting into a very bad mood very quickly...
It took me a while to figure that one out and it wasn't until I read about other people complaining of the same problem that I put two and two together.
As Milly had no understanding of what I was going through and had little tolerance of me on a good day towards the end of her time with us anyway (I'll elaborate on that further on in the blog), she wouldn't have factored that in and given me any leeway for the occasional bad day.  You see, Autism tends to magnify things, so the odd bad mood in reality gets perceived as 'always in a bad mood'.

Secondly, when Milly went into Care I was very upfront about having Histamine Intolerance as I knew my weight was so low.  What you don't necessarily know about Social Services however is that when they write a report, their 2+2=5 theories become fact...  So when Milly complained that she was fed up of always being hungry because I never fed her (not true), that became a 'well, mum obviously has issues with food so that's obviously the reason why she withholds it from Milly'...  written down for all to see and believe.  But it's so far from the truth it's laughable.

The truth is this.  Milly's been difficult to feed for years.  A lot of Autistic kids are.
Compound that with her choosing to be a vegetarian, then suffering from IBS that gets exacerbated by wheat or wheat traces in foods...  then add in her wanting food to be cooked and taste the exact same way every time or she's bound to go off it, plus her wanting to eat a particular food at every meal time until she goes off that, too.
Then add in the fact that she stopped eating breakfast once I had to drive her to school (Secondary) - and she stopped eating any lunch at all (because eating made her stomach hurt and she couldn't cope with that pain as well as coping with being at school - her words to me on several occasions when I tried to persuade her to at least try taking something in to school to eat)...  and you'll begin to hopefully see that this was pretty much just the way it was and no amount of trying would change any of it.
And believe me, we tried...
My husband phoned every single evening on his way home from work in case I really couldn't get her to eat anything and she wanted Takeaway instead.  
That's how difficult she was to feed.

And yet now, in Foster Care, she's eating really well AND eating lunch at school.
(Remember I told you about Social Services only focusing in on what they perceive to be 'positive changes' in Milly's behaviour)?  
It's not logical to explain, and without a framework of understanding kids with Autism they never will.  But I spoke to someone about it who is highly trained in dealing with kids like mine and she phrased it like this...  'It's the difference between Milly eating because she's hungry and not because you've told her to'.
Like I said, it's Autism logic that Social Services won't understand...  and there's no point in us telling them because they simply won't believe us.

Please Read This First...

On 5th January, 2016, I took my daughter to school - just like any other morning.
That was the last time I ever saw or heard from her.
She's now in Foster Care, having made horrendous allegations against me.

This blog is my attempt to explain how and why this has happened - plus perhaps the odd occasional update.

Many of you may judge me.  All I ask is that you read on and try to reserve your judgement until you've read the whole story.  I really did try my best...

So why do this?  Why write about myself and what's happened so openly when, quite frankly, it tears me apart and leaves me open to judgement and unfair criticism?  There are many reasons...

I'm writing this in the hope that one day Milly might read it and believe it.  Then perhaps she'll understand that what she thinks happened never really did.   I don't know how many more 'tomorrow's' I have - none of us do...  but at least this way I can try and explain things to her.  Whether she believes me it not is another matter...

I'm also writing this because I know that the BBC are considering doing a programme that specifically highlights the issues around parenting High Functioning girl's with Autism.  To be blunt, it's bloody hard work - especially once they reach their teenage years.

And the other reason?

Because there's a stigma attached to parent's such as me who haven't done anything wrong but get treated as though they have.  My husband and I are not the only parents to have had our lives ripped apart because of Autism...  or to be more precise, because of a lack of understanding of Autism and how it presents itself.  I want people to know that they are not alone if something like this ever happens to them...  because I can assure you you will feel alone.  And you'll blame yourself and replay things over and over in your head, trying to second guess where it all went so wrong and how you never saw the signs.
Let me assure you, the signs are so subtle you would never have been able to change the outcome on your own.  So stop beating yourself up.  You've been through enough already.

The truth is this...

There are only a small handful of professionals that exist who know and understand the complexities of High Functioning Autistic girls.   We have spoken to one of them and she has explained to us the probable reasons as to why this has happened.   But Social Services refuse to meet or even speak with her and refuse to acknowledge that my daughter is 'in crisis'.   I have asked them repeatedly to access additional support for Milly, but as they only look at her surface behaviour and see a whole host of 'positive' changes (I'll elaborate on that later on), they see no need and simply don't realise the damage they are causing by not helping her.

But you see, it's not even that simple...

As Milly is now 15 years old, she gets to call the shots. That's simply the way that Social Services deal with her age group.  So no one can make Milly get the mental health help that she needs.  It still doesn't excuse Social Services ignoring our plea to access additional support for themselves in dealing with Milly...  But if I'm honest I think they either don't believe us or just really don't care.


I'm sure I'm stating the obvious to you, but Milly is not my daughter's real name.  I chose it because as a child she named a lot of her toys Milly.  We didn't know back then that we were raising a daughter with Autism, but in hindsight this was one of many tiny clues.

So...  Unless I say otherwise, all names have been changed.

As you read ahead you will notice that this is a 'book style' blog - mainly because I needed to find a way to give it some structure.  If you feel the need to comment or ask questions, please do.  I have nothing to hide.  Far from it.

I hope it helps point to the truth...