Thursday 11 January 2018

Little things become big

The grey sky is really matching my mood today. I’m inside, but a part of me wants to be outside, letting the rain wash away my tears. 
I feel grey. I feel like crying. About nothing in particular, just everything at the moment. I think of all the colourful, vibrant women posting feel good motivational Insta pics, and it makes me want to cry more. I’ve done that too, I’ve been positive, but sometimes you have to admit that there are also down times. 
The wait for school news is getting to me, and not having a fixed plan is clearly frustrating for Sasha too. I’m feeling invisible at the moment; when Sasha had to withdraw from her mainstream school it meant an enforced absence for me too. No playground talk of SATS for me, or of school yearbooks, parties and the like. This should have been a happy, joyous year. The final year in a school which my eldest girl had a fabulous time in. The school which I’d been turning up at twice a day, every day for the past eight years. More than that, if you count all the extra assemblies and shows, oh and extra meetings for Sasha too. 

One school mum I met recently asked if Sasha would return to her class to join in the end of year, end of school celebrations. Sadly, it’s unlikely Sasha could face joining in with any big group activities. And yet she’s asking every day for sleepovers and if she can have friends over to play. Difficult, when you know those old friends don’t have much in common with her and may not want to, but she’s not yet had chance to make any new friends. Unrelated to all that, I’m waking up every morning with terrible back pain which takes hours to recover from, and I’m left wondering how I’d manage a school run currently anyhow. 

So I’ve taken a break, I’m in the Debenhams cafe, having a cuppa (with sugar) and a panini. Husband is working from home for the day so I’m able to get out for once, to do necessary returns and get bits we need. I’ve spent 20 minutes examining all the dresses in here to see if any are jersey, soft enough, without embellishments, right length sleeves, no bobbly fabric, waistline at right height and not too tight... I don’t get to choose based on what I like the look of, or even what she likes the look of. Today there are none that fit the brief. It’s rare that there are. That’s why I have to keep on looking, to find the right few when they appear, and hope that they are made in her size - even less likely now she is getting older. 
Then it struck me. This is autism. Or at least, some small part of it. It’s never-ending. It’s exhausting. It’s not just about searching for the right dress, obviously, but it is about the little things. And what a big impact lots of little things can have on a life. The build-up can go on seemingly endlessly, with little respite. And then, at times, the weight (and the wait, ha) can feel crushing. 

I’m one of the lucky ones, I know. I can deal with this. I have support, and I know how to ask for it. The smiles of my two girls make everything alright, always. My heart goes out to those who are struggling; those who don’t trust themselves enough to know that they are right, those who are being beaten down by others who believe that they have all the answers, and those who have no-one. 

Several years ago, a lovely lady looked me in the eye as I dropped Sasha off at school and made me promise her that I would sit down with a cup of tea and cake that day. I’d got to the point where it was much needed, and she saw that. She gave me the permission to take a break and make some me time. This is something which can be so difficult for parents of children with additional needs to achieve, but which they often desperately need. I’ve only done the cuppa and cake out of the house three times since then, but I think of her every time I do. And I appreciate her wise words. We all need to make time for ourselves, to recharge, to feel a bit down then do our best to recover. How long that takes is different for different people of course. Just as autism is different for different people. 

So now, the cuppa is done and I’ll go trudge around the shops, getting done what needs to be done, but reminding myself there is no rush. Sometimes things take time. Sometimes you need to be with other people, sometimes you need to be alone. There’s no fixed formula. 

Writing all this has reminded me of a friend who has started a new blog, and I think anyone who relates to any of these words should go and follow that. It’s called the Mum-Care diaries ( Even if you don’t need it yourself, why not share for someone else who might?

To find out more about our experiences, please check out our 'About Us' page. If you are looking or more information on Pathological Demand Avoidance, why not try some of these, my most popular posts?

What is PDA (Pathological Demand Avoidance)?

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The difference between PDA and ODD

Strategies for PDA (Pathological Demand Avoidance)

Pathological Demand Avoidance: Strategies for Schools

Challenging Behaviour and PDA

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Autism with demand avoidance or Pathological Demand Avoidance?

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