I would like to moan and say I am an emotional eater and that is why I am fat. But jeez, no one experiences THAT much emotion.
This week has been a bit of a humdinger of an ‘I Stand Quietly’ roller coaster but that does not excuse me indulging in a Twos’day Tuesday from Pizza Hut with the daughter as hubby is out
boozing winning more advertising awards (Two more ‘golds’, yay, go him! SO proud.).
I shall now repent at leisure over the next several hours of sleeplessness whilst the acid burns merrily up my gullet.
That really is sitting quietly, I dare not move or lay down, I will choke.
I haven’t the ability or patience to put into words all the emotions I have felt this past week and a bit. I am quite knackered. I am very humbled by the messages I have received and very elated by the amount of money raised. But mainly, I am knackered.
I have resorted to a mass email thank you to all the donors which is a bit crap but I hope they will understand! I have read every comment and thought about it and eaten lots of crisps while I did.
A few comments have stuck out, not just because they were not as frighteningly positive and supportive as all the others but also because they really made me stop chewing on my Hawaiian and think.
One of the things I hadn’t allowed for in sharing ‘I Stand Quietly’ is that a lot of people would want to share ideas for how I could help my daughter. Hmm. I have had some angst over approving comments recommending “cures” as I don’t want to appear to be endorsing them or giving anyone false hope.
I have approved them as I felt they helped to illustrate the floodgates of (not always appreciated) advice an autism parent receives. No different to any kind of parenting journey – from the opinions on boob or bottle, discipline, bed times, sweets, screen time, whatever…
But where you have to make decisions on therapeutic interventions that could seriously enhance, change or limit your child’s future potential, feck. Those helpful emails and comments are really hard to read.
We have tried a lot of therapies. I’m not ashamed to say we’ve tried a whole bunch of stuff NHS-approved through to things that are borderline witchdoctor. We have read about and angsted over and decided not to try a load more.
Like all parents, I have to live with the consequences of my choices and recently I’d got to a place where, give or take the odd wobble, I knew I was doing mostly the right things for my daughter and I knew the right things that I wasn’t yet doing and I knew when I would get to them. I have (temporarily, don’t worry!) lost a lot of that surety.
Tail spin. Better go eat some cake.
The other comment that I am pondering this evening was from the mother of an autistic child in response to the National Autistic Society posting of my ‘poem’ on Facebook:
I appreciate the poem, as this is also my life w/my son. However, am confused and disappointed by the sense of pain and (?) martyrdom of the author.
This is our life. This is the way our child experiences the world. While I have another, younger child not on the spectrum, and I would have P’s life be easier , I would never change anything about him — for it would change other things about him, and something special would be lost.
Yes, it’s a hard life. But all life is hard, eventually. This is his life. This is what we are.
Argh. Nerve hit. I was so worried about coming across as a martyr.
Not for me, for my daughter. Being thought of as a martyr for me implies that a lot of it is about me. None of it was meant to be about me, it is about her. It is written from me, from my perspective, that’s the only knowledge I have of what she goes through; but if anything of ‘me’ came across I hoped it would be love. Most people have read it as that, so I’m fine.
As for pain, hell yeah, I am wracked with pain. But only because my daughter is unhappy, and I don’t know how to fix it up quick by putting a plaster on the booboo, not because she has autism. IF she was happy, I could care less she has autism.
My daughter has always balked at being referred to as “special” and can be pretty forthright with well-meaning adults who try to relate to her (or make themselves feel better) with trite platitudes like “everyone is different”.
In my experience of her, she’s right: sensory defensiveness is NOT special, it is a pile of steaming shit. Losing control of yourself in public because someone unexpectedly set off a hand-dryer or a police car drove past with its siren blaring, or someone gently touched your head is not the type of different that anyone aspires to be.
That is just my opinion. And I am glad that mother also expressed hers. I would much rather there was a lot more talking about autism generally. I am pleased for her that she sees the right kind of special in her son. Maybe he doesn’t have bad sensory problems.
I am not jealous, and I seriously hope I am not a martyr. Maybe I concede I still need some therapy. For now, I will make do with flirting on Twitter and eating crisps.
And being preoccupied with heartburn.
I am not looking for sympathy. Part of blogging for me is externalising thoughts and emotions so I can distance from them, regain some objectiveness and ultimately become THIN.
Then I will be amazing, when I am thin.