Sunday, 21 July 2019

Everyday challenges with PDA

Last week, I posted this picture of me on my blog Facebook page. It was a very spur of the moment thing which seemed to grab a lot of attention even though I hadn't planned it that way. I didn't for a second think that so many people would see my tear-stained, make-up free face splashed around the internet.... but that's life I guess. 
Steph with sad crying face
I had a few comments suggesting that I should reproduce what I wrote that day as a blog post here because people felt it explained some of the challenges which face us and our children with the Pathological Demand Avoidance profile of autism. So here goes, I've left it as it was the day I wrote it:

'Right now, I am supposed to be at a dentist appointment for Sasha. Instead, I’m sitting on the sofa at home having just bawled my eyes out. Deep, wracking sobs. This has only happened a handful of times, less than five, over the last 12 years, and it seems so stupid that it’s over something as minor as not being at a dentist appointment.

I don’t share photos of Sasha when she’s upset which is why you’re getting one of me instead. Right now Sasha is upstairs on her bed, having had a huge meltdown which has left her weak and tired. 

This meltdown wasn’t about going to the dentist; we have a great dentist, she’s happy to go usually (as much as anyone can be about the dentist) and it was just for a check up. A check up which she needs because I’m slightly worried about her teeth and gums, because she’s stopped brushing them regularly since she stopped school. I have to do them for her now and I can only manage a couple of times a week. We’re lucky, she only drinks water so her teeth have been generally in fairly good health. 

It wasn’t about the dentist though. Sasha wasn't able to go to the dentist today because my husband took my car to the garage for MOT work needed on it. Which meant we would have had to go to the dentist in husband’s car. Sasha hates this car with a passion. She doesn’t like the seat material or the way it feels different to her usual seat in my car, or the fact that her standard CD to listen to is not in his CD player, but worse than that for her is the smell of his car. It’s not a bad smell, to us, it’s just different. But to her, it’s unbearable. She has managed to go places in it before, but today just the thought of it was terrifying her. No matter what reward I offered her, she could not bring herself to get in it. She was upset because she knew I was upset, she knew that there was an unspoken pressure to go. 

I think the part that many others wouldn’t understand is that I didn’t raise my voice once. I just tried to persuade her for nearly half an hour that it might be uncomfortable but it wasn’t a long trip, she could take what she wanted with her to make it comfortable etc etc. It’s experience that tells me that getting angry or shouting at her would have just escalated the whole situation. Sometimes patience and gentle persuasion works, sometimes the promise of McDonalds will help. Today though, nothing was going to make it better.

Now I feel rubbish for having to cancel and let the dentist down, and I have a headache from the crying. I know that Sasha feels equally as bad and today there will be barely any talking and definitely no laughing. I’m sad because doing something so everyday and simple for many, leaving the house, is like a huge mountain for Sasha to climb. I can see it, but I know that others don’t get it. I’m sad for her that she isn’t able to cope with these challenges at times.

I’m also grateful though, for the support I’ve had around me from the day that Sasha was born, family and friends and now blog readers too, who give me extra strength in my knowledge that it’s not my parenting at fault; being tougher or stricter would not make her life any easier or help her to ‘just get on with it’. If only it were that simple! So tomorrow is another day; I’ll have to rebook an appointment and make sure it’s a day when I have my own car available. I just need to figure out how to stop my eight year old car from ever breaking down or going wrong again...'

I found out today that Sasha had heard my cries although I was downstairs while she was upstairs. That's why she texted me this picture she had created later that day:
Sasha's image of a sad person saying sorry
I felt bad about the fact she had heard me cry. Her self-esteem is low enough already. I didn't want to make her feel that my crying was her fault, or even that her not being able to leave the house was her fault. It's not her fault, it's just the way things are, a build-up of anxiety and sensory issues which are part and parcel of her autism. I understood, but needed to let my frustrations and worries out at that particular time. So when Sasha said (in passing) that she'd heard me cry I reassured her that it wasn't her fault, and explained that people do need to let their feelings show at times. I think she understood. 

With hindsight, we were juggling too much and ideally we shouldn't have booked the car into the garage on the same day as the dentist. I booked the dentist though, husband booked the garage. Our calendars don't always match up now there's both technology and paper versions (and let's face it, husband is not a fan of using either!). The reason he books my car in though, rather than me doing it myself, is because it would be unbearable for Sasha to have to come to a garage with me and wait around while my car was checked in, then have to travel home in a different car or by public transport. So usually it's better if that's a husband job. 

We just failed to forward plan properly this time - and to be fair, whilst we had an idea that Sasha didn't like his car, she has traveled in it before and we've never faced the situation where it was impossible for her. Another point which I think many find it difficult to understand - if she can do it once, why can't she do it again? But it all depends so very much on the individual situation, mood and environment at that time. What my twelve years of experience of living with PDA can tell you, is that she was not doing this to be awkward, or just because she didn't fancy it that day. It was more than that. There's always reasons, if you look hard enough.
Sasha smiling on swing
Here's a happy photo to lift the mood - obviously not taken that day, but I'm adding this to highlight that there are plenty of good times!

For those who are struggling with tooth brushing for their child, I did follow up with some suggestions on my Facebook page which may be helpful. First, this double sided Dr.Barmans Super Brush Compact Junior Toothbrush (it comes in an adult size too). I'm currently having to brush Sasha's teeth for her and she tolerates this at least - but we are down to once or twice a week at the moment. We are lucky she only ever drinks water and isn't a sweetie fan.
When Sasha was younger there was an Aquafresh app which both my girls loved - they'd dance along to a little song and then get to choose outfits for the toothbrush as a reward! Lovely Afra from Madmumof7 blog has reviewed a different kind of toothbrush and app recently, the Playbrush Sonic and I thought it worth mentioning in case anyone would like to look into it. Another recommendation I was given by a page reader was 'Splat Oral Care makes a cleansing foam in a bunch of different flavours that you just swish and spit. They also have a line called BioMed which is designed to clean thoroughly in just 30 seconds of brushing though of course 2 mins is always the recommendation. It's available at splatoralcare.uk'. There’s also Oranurse unflavoured toothpaste. Ultimately you need to decide what is best for you and your child but I hope some of these ideas help.



To find out more about our experiences, please check out our 'About Us' page. If you are looking for more information on Pathological Demand Avoidance, the posts below may help.

What is PDA (Pathological Demand Avoidance)?

Ten things you need to know about Pathological Demand Avoidance

Does my child have Pathological Demand Avoidance?

The difference between PDA and ODD

Strategies for PDA (Pathological Demand Avoidance)

Pathological Demand Avoidance: Strategies for Schools

Challenging Behaviour and PDA

Is Pathological Demand Avoidance real?

Autism with demand avoidance or Pathological Demand Avoidance?




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4 comments:

  1. Steph, my heart goes out to you. You are so in tune with Sasha and I admire how you keep in mind that there are always reasons for her actions. It doesn't make it any less frustrating, but hope it helps to know that you are doing the best. And it is sweet that she texted you that picture in that she showed you how much she cares about your feelings. Hang in there, Steph.

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    1. Thanks Yuji. There are ups and downs for every parent of course, I'm sure many are driven to tears... but I try not to, most of the time! It can just be so frustrating, especially when you want to help but don't know how :(

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  2. Oh gosh Steph I think you are absolutely incredible!

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