The Boo Diaries and Beyond

Whilst I write this in the Sardinian shade, I remain completely and utterly overwhelmed by the outpouring of support I have received for posting about Matilda’s (Boo) meltdown. I can't scribe my gratitude enough, mainly because it made me feel, well, not so alone actually. 

Thank you for inspiring me to write the below, which I found extraordinarily cathartic. 

I’ve decided to start a diary (again) I’ve done this several times over the years. We’ve seen a mountain of professionals all of whom, at some stage, have mooted the point, that a daily diary of Matilda’s mood swings may help to identify triggers to the melt downs. The cause of some of her distress etc. Alas the only clarification we got was that pretty much everything and anything on any given day can start the aforementioned melt downs.

EVERYTHING is anxiety. This is difficult to explain. So you think, get her to talk about what is making her feel this way, simple. Not so!  No human is permitted to say the following within ear shot unless you are prepared for Armageddon. 

  1. Anxious - DO NOT even go there
  2. Worried - Same as above
  3. Distressed
  4. Nervous 
  5. Tired
  6. Sad
  7. Scared
  8. Troubled 
  9. Cross
  10. Angry
  11. Temper
  12. Melt down

Pretty much every synonym of the above words will trigger code red. 

We’ve tried colour coding her feelings, black for the worst she feels (to clarify we got Matilda to choose the colours, black is her least favourite) pink, for the happiest of feelings. But it didn’t last long, a real commonality for her. 

We’ve started about 800 charts, our kitchen at one stage looked like a primary school classroom for 50 kids, wall to wall star charts. We all had them, so she wouldn’t feel left out and even more different than she already feels. But after a while it made little or no difference. If, that is, the star charts survived. They pretty much have all fallen victim to the most hideous of the PDA (pathological demand avoidance) traits; aggression. Yes that vile beast is what I think may put me (and her) into rehab in the end. 

I can pretty much handle the obsessive behaviour, the mood swings, fuck off massive, unnavigable, whip lash swings of mood. The language delay and receptive language issues. The often hilarious, going into role-play mode/withdrawing into fantasy, mid speech at any given moment. Quoting from movies in a terrible American accent, also hilarious. The out and out lying, even when caught in the act. The physical incapacitation of herself to avoid carrying out what is required. The quite awe inspiring life skills that she has acquired giving her the ability to beguile even the most savvy of adults. The constant procrastination leading to negotiation, essential to carry out the most menial of daily tasks. These are small fry in comparison to the physicality this utterly wretched form of 'high functioning' autism throws up. Not quite on a par with the physical outbursts, but school refusal is up there. As this means yours truly has to deal with all of the above, all the live long day. This makes for a very ‘shouty Mummy’. 

Yes Proper Diabolical Arse is an all out shit show. I am sure there are many parents with children who have a diagnoses of PDA that this will resonate with, but I do often curse that she has this horror, rather than the stereo typical autism.  I know how that must sound. But seeing your child claw at their own skin, because the self loathing of their actions is a depth, that I’m not sure anyone without extensive mental health issues could ever truly understand, is so soul destroying, I defy any parent not to feel, that their child is a bit hard done by. 

The control that Matilda feels she has to constantly maintain, means that when I ask her a simple request, she will reply. ‘I don’t have to do I Mummy, its my choice’. Then when she has answered aforementioned question, She then requires you to ‘O.K’, EVERYTHING she says. 

‘I can wear these sandals today can’t I Mummy, O.K’.

I will then have to reply ‘O.K’. On a good day only 2 or 3 times on a bad one, north of 20 at any one time. I find it tough to always maintain a peaceful and calm response, I’m not going to lie. I’ve screamed ‘O.K’ before, a LOT louder than I should have done and in a pretty aggressive manor. I keep telling myself I'm only human, but truth is, its a poor excuse. 

We’ve seen soooooo many professionals about it, we are extraordinarily lucky to have seen some of the best in the business, but her PDA wasn't diagnosed for ages. When it was eventually diagnosed I was a bit scared of it, so I actually asked them to remove it from her report. I thought that no one would touch her after this. But theres no hiding from the truth. I can't edit it away.

It’s left me feeling a tiny bit bummed at the medics and all their wondrous brains. I think these wondrously brained folk are marvellous. but they contradict each other a great deal of the time. But you keep going back because, maybe this time they'll make a difference. Its confusing to navigate this world because I'm a parent, not a psychologist or a paediatrician or a psychiatrist. You're expected to be all of these things, but I'm just Mum who used to choose clothing collections for a living.  

Also we as parents, hang on so much to what they say in sheer desperation. ‘The Doctor is always right’, its how we are raised, it’s ingrained in us. But they are human after all, they miss stuff and as it’s a difference in the brain, it's invisible, so difficult, at the very least, to determine the right path. We want them to fix the unfixable I guess. But you can’t see a broken brain, the most complex and important part of the human form that eats away at its host and all who surround them.

Boo at 10 with Bu.png

Then there’s the cost, its soooooooo much money. This is where I am so thankful and grateful. Whilst we don’t have a bottomless pit, we are in a remarkably privileged position that allows us to actually see specialists at all, when I know there are countless others who can’t even get a foot in the door. We’ve been on long waiting lists, I know what that’s like. We waited two years to see a medic, to get her ASD (Autistic Spectrum Disorder) diagnosis.  

Is there an acronym for a group of medics? Well thats what you need for children with complex mental health issues, because not one of them is correct. But a little particle of each of their uber grey matter is what is required to get a true picture, a life plan required for your child to function. 

You'd think that popping an anti depressant into her granola each morning would bring her peace, Matilda was on Setraline 50mg per day, but I’m unconvinced its making any difference currently. So as of yesterday we took her off it and are now piling into the vitamin mountain recommended by a specialist nutritionist.  This isn’t to say I won’t start her up on it again in time for school, after a significant break there is usually a noticeable difference, for a short time at least.  I’ll let you know how it goes! 

So all doom and gloom it is not! Matilda is, for the most part a contented little sausage. School is where she is currently her happiest I think. I would be if I had gone to that school. Its mainstream and the support they give her and us has been life changing for myself and my family. So if the holidays are the shark pool, that's ok by me. 

Anyway, today, is a good day.  We are melt down 1. Glasses of rosé 1. I’ll take those odds.

Caro x