Sitting quietly, trying to manage the heartburn

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.

16 thoughts on “Sitting quietly, trying to manage the heartburn

  1. Oh no! I wonder if you will be equally flooded with cures for heartburn.

    I only just told a mum I know about your blog yesterday and said don’t worry it is not full of advice and cures just experiences and humour. Keep them coming 🙂 , all the usual responses will arrive as they would in any other forum but THATS GOOD, because the conversation is what it is all about. It IS what it IS for you, and it IS what it IS for others. Thanks for sharing. 🙂

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  2. I too, will be amazing when I am thin! I have a child on the spectrum and I thought ‘I stand quietly’ was beautiful. Although some of the experiences you were referring to were obviously not beautiful ones, you expressed yourself beautifully. Yes, this is about raising awareness and by doing so, helping your daughter and others like her, but it is allowed to be a little bit about you too. Sometimes it is good to just let the words out. I really enjoy reading your posts. Am afraid I don’t have any useful heartburn advice though 😞.

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  3. I have been so heartened by ‘I stand quietly’. It wasn’t about martyrdom, it was about you and your daughter and the agony of keeping your mouth shut when it would be a lot easier to let out a stream of obscenities. I struggle with that control, every time I stand up in front of people to talk I warn them that something strong might slip out…. I have been guilty of the ‘I wouldn’t change him’ speech but I always temper it with ‘ that’s easy for me to say, my son isn’t scratching his clothes off because they are agony or unable to accept comfort.’ He is under-sensitive to touch which is grim for him as he can hurt himself hideously and barely notice while I thank my lucky stars that he can accept all my hugs. How’s that for selfish…

    Keep at it, your writing is beyond brilliant x

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  4. Hi

    Just wanted to say in 40 years of working with and for people with autism how much your posts will mean to people. Too much is said in cliches and not enough in honesty.

    Because you are honest it doesn’t mean less love, less passion, less determination! It does mean that parents can voice some of these feelings instead of having to appear ‘strong’ ‘amazing’ all the time.

    Most people get to hold the shitty end of the stick some times… My experience is that parents get to hold the shitty end a lot if the time ! ( but you can use the washroom when you can get there?)

    The very best of luck and keep posting
    Eileenasd

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  5. Lansoprazole!! See your gp! 😉 totes revolutionised my eating/lying down!!

    As for changing her. I have 3 autistic kids, not too high on the spectrum thankfully, but even still, I have issue with all those lovely quotes about accepting my child for who she is and never wanting to change a thing about her.. heck, I love my kids and totes accept them, but if I could choose. For them not be autistic, I would! In a heartbeat. Like you say that kind of ‘special’ is really no fun for them at all.
    Great post! Again! 🙂

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  6. OK, so as promised here’s a heartburn remedy. I bet you have a hiatus hernia (maybe undiagnosed?) Anyway, it doesn’t matter if you have, I still think it will help your heartburn if you lose weight. (Lansoprazole helped for me for a while but then built up in my system and made me feel horribly unwell. Worth a try, though.)

    So, yes, I’m a total bitch, advising you to lose weight. But only telling you what helped me, not a skinny bitch preaching from smugland. And strongly, strongly recommending the 5:2 diet – which becomes a LOT easier with time. But even at the beginning, you have the consolation that it’s a day of torture, followed by a day of total delight where you enjoy food even more than usual, and can eat whatever you like. (5:2 diet particularly recommended because it targets visceral fat. Which will be the fat that’s pressing on your digestive system and increasing your heartburn.) Do at least read the book, which is available for peanuts on Amazon…..

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  7. Hi hun thank you so much for sharing it did make me cry as my son is diagnosed as classic autistic and he to has the hair dryer and sudden noise sensory overloads along with the melt downs and wonderful comments and stares re: how to parent properly and the not going to parties as he can’t cope with the singing of happy birthday etc. I would change my son’s diagnosis of autism in a heartbeat if that was possible as the world is a very cruel place and I don’t care what any one says but they would too and they know it. Yes I accept my son’s different but the big bad world who I try to protect him from doesn’t accept his differences without stares and nasty comments or over bearing sympathy. I just wish people’s view’s on difference would change but that’s like wishing for the moon. Sending hugs and hoping you have a good day 😗 xx

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  8. Hiya, am glad I found this while trawling facebook endlessly in the hopes that the socialisation I get will in some way relieve my own desperation for contact while my own special kiddo sleeps in the next room. We have all those wonderful “she’s so cute, you’d never know” comments and we have the “all she needs is a bit more routine” ones as well.
    We are a different kind of different and yet there are idiots, well wishers, dreamers and critics who cross our path all the time too.
    Personally I think you got your balance right, your letter showed your daughter and your love.
    Well said, wishI could write like that too.
    From one special mum to another, thanks for sharing your steaming pile of shit, I feel like my own pile of shit is now a little more connected to the world that we hermit in.
    I’ll be back.
    Kate

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  9. So, the cure for heartburn is…

    Just kidding.

    My niece is on the Spectrum. My sister in law has become so much more tolerant of her “quirks” now that she has a diagnosis. Of all the family, I seem to be the only one listening to her. Our father in law still maintains, even after being shown the psych-social report and diagnosis, that she’s stubborn and my sister in law is a horrible parent. She’s not. She is an exhausted and frustrated mother because one day her daughter won’t wear socks. Just because and she was late for school because she wouldn’t get dressed if she had to wear socks.

    My sister in law is frustrated because her daughter’s IEP isn’t being properly implemented, which leads to horrific meltdowns around homework.

    My sister in law is frustrated because her daughter doesn’t like her ABA therapist’s tactics, which change all the time because she is trying to find what will work with my niece.

    My sister in law is frustrated because once again, someone has made a comment that she’s too hard/too soft on her ASD child. She can never seem to find a balance where anyone agrees she’s doing right by her child.

    But she is. No one seems to understand the work she puts in to making it through the day.

    Luckily, she has me. I listen. I ask what they’ve tried and what has worked. I stand up to our father in law for her when she’s just too tired to reiterate the same information over and over, hoping it will get through HIS stubbornness. I talk with my niece. I try to make visits with her special in some way. I try to listen about her new favourite activity (obsession) until I just can’t anymore.

    My kids are neurotypical. I will likely never know what it is like to have an autistic or ASD kid, but I no longer judge the screaming mooing toddler in the market. Sometimes, I’ll tell mum, as she stands in the aisle, red faced with embarrassment as her tyke melts down, “you’re doing ok, mum. It can’t be easy to watch, but you’re doing fine. Don’t worry what others think. And if I can be of any help, let me know.” We mums, we need to stick together. After all. It takes a village to raise a child.

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  10. My 18 year old son is HF-ASD. The way he processes the world has changed since the days of shopping at 10pm to avoid the crowds and spending the whole trip soothing him and saying “It’s ok, I hate the lights and the noise, too, we are almost done.” Gone are the days of abandoning carts at Target because of melt-downs. But now here are questions about how to manage college, how to manage roommates, how to manage prom dates and relationships with friends, never mind trying to explain romantic relationships! The challenges change. But through it all, it’s always been him and I. We are partners in each other’s lives, and he has been an absolute gift to myself, his teachers, his coaches, and his classmates and co-workers about how to live a life true to who you are. He does it, and most people can’t. And everyone knows it. He struggles to accept his weaknesses, as do all of us. But he is getting better are recognizing how his weaknesses can be turned into strengths. When he was 4, I laid on his bed with him and cried. He wasn’t speaking, and we weren’t sure he’d even go to school. Now he’s graduating high school in 2 months and going to college. Life sure brings us on amazing adventures. I’d have missed so many if it weren’t for him.

    I’ve found over the years that most people with comments and “cures” really just want to help. Some have done research and had good experiences, some just read a meme on Facebook and are ignorant of how false it is. But most of them want to help. Take what you can us, forget and toss the rest.

    Thank you for your “Standing Silently” letter. As you stand by your daughter, there are many standing with you as well.

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  11. After reading your blog I have to say I think you’re amazing just as you are, thin doesn’t need to come into it! I suspect the person who mentioned ‘martyrdom’ has some issue of her own lurking in the back of her mind, I don’t know, maybe she feels no one is sympathetic to her own plight. Perhaps behind her upbeat facade is a person with no one to lean on, or is afraid to show a less than perfect face to the world. We all need to let off a little steam, the lucky ones among us have people who understand this, and let us vent without judging, cos they know who we really are.
    And why aren’t these people with ‘cures’ for Autism all millionaires?
    Trust your instincts — do what you know is right, when it’s right, for tge whole family. As for changing things, I always said I’d change things about my son, not because I didn’t love or accept him the way he was, but because some things made HIS life difficult.

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  12. Sitting quietly made me laugh and cry. The emotional outpouring of a mother is not martyrish, it’s voicing reality. If we all put a brave face on everything and pretended it was easy how does that help anything? I suspect that those who call you a martyr simply feel uncomfortable with the idea that being a mother is sometimes hard and probably don’t acknowledge their own feelings either.

    Keep blogging. As well as raising awareness, you’re helping articulate things that other people find hard to say.

    Ps. Your daughter is lucky to have a mother who loves her so much

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  13. I don’t think you’re in danger of running out of comments! But I thought I would leave one anyway as I hate the thought of you stuck in the house for so long and checking for comments… 😦 You sounds amazing and your love is so strong, it is inspiring. I am lucky to have 3 kids who so far don’t have any unusual problems relating to the world. I do try not to take that for granted. I was scrolling down your blog a bit and I am so SO sorry about the mental “Christian”. I’m a Christian and I was so glad that you acknowledged that someone like that is giving the rest of us an unspeakably bad name. Sometimes it makes me spitting angry but today it just makes me really really sad. Sending you love. Sorry it’s a random comment, not crafted like yours. but I just wanted to say hello! (oh and yes I love the Lego Movie!!!)

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