Sunday, 22 March 2020

Frustration and high anxiety on special days

Stephs Two Girls March 22, 2020 autism, control, mothers day, Pathological Demand Avoidance, PDA, PDA Life

It's Mother's Day today and although I got two cards, because I have two daughters, both cards were actually signed by just one of my daughters. Our teen is well used to doing the signing on behalf of her now twelve year old sister; any cards to me or other family members for birthdays and Christmas have been signed solely by our eldest for several years.

mothers day card with writing dear mum from sasha she didnt want to write a card as expected

Today I've been sworn at and told to kill myself. I'm one of the lucky ones though; these messages were only passed on via a light box and text messages. I know there will be other parents and carers out there who have born the brunt of frustration in other, more physical, ways. Some who will be dreading the reality of having children home from school indefinitely.

That's why I'm writing this, really. To share with those other families who are living through similar, and worse. Especially right now, in these times of uncertainty. Nobody wishes pain on others, but I think there is some comfort in not feeling alone. Talking about this is important.

I'm aware that I'm one of the lucky ones. I know that our youngest daughter doesn't want to hurt me. Even though today there was no clear reason for her to be angry at me, I'd not done anything 'wrong' except breathe, it would seem, I managed to stay fairly rational. I can't deny it hurt, and a quiet tear or two briefly rolled down my cheek. But I pulled in some of those strategies which I've been using for years, mainly the staying calm and not raising my voice. We got through it, with an apology on both sides. I was sorry too, even though I had nothing specific to be sorry for. I was sorry that she was so upset that she felt the need to turn on me - but I was sad for her, not just for me. It's not fun for her to feel like that, she doesn't thrive on it.

Today could have been a reaction to the building anxiety around the current climate. The fears of life changing in ways unknown. Or it could have been the irritation of not being able to achieve the exact thing she wanted, of not having a gaming partner who is up to her standard, or not being able to communicate to others in a way they understand. Our girl has a lot of challenges which she faces every day. Some days she can overcome them, others it all gets too much. I spend a lot of my time trying to figure out what kind of a day it is for her, and trying to guess what accommodations she might need. This happens on a daily basis; no two days are the same, as I'm sure many parents and carers of those with Pathological Demand Avoidance with tell you.

'Walking on eggshells' is a phrase which many will relate to. Some days, carers can be pushed to the limit and feel like stomping all over those eggshells with big heavy boots. The truth is, nothing is achieved if that happens. As Professor Ross Greene suggests, changing your lenses is one of the most important actions you can take. Looking at situations from a different angle can help prepare for the times ahead. Unpicking what has caused the upset can often lead to new solutions. As adults, this generally falls to us because children are not always so mature in their outlook or ways of communicating. We may not feel like being mature either at times, and that's OK too. No-one is perfect! Don't beat yourself up if you can't keep a lid on it, but if you can take a step back and defuse any inflammatory situations, it's worth doing.

Birthdays and other special days have always been tricky here with PDA in the house. The unseen demands of any occasion can be huge, even when it seems nothing is expected. Our youngest always wanted to open the presents of her older sister on her sister's birthday. Initially we might have seen this as a need for attention, but we came to realise it was more about anxiety over the unknown. Not liking surprises, because they cause more stress. As the years have gone on, she has withdrawn from any of these special days, even to the point where she hasn't been able to wish even me a happy birthday. She says she loves me the most, because I understand her the most. But that doesn't make this pressure any easier for her to bear. All I can do is be understanding of that, and not apply any more pressure to conform. It's easy really, because I know nothing is achieved if I do. I've learnt that over the past ten years.

For those who are facing worse times with their children over the coming weeks, I'd like to recommend Yvonne Newbold's website as a great place to find good information and other carers going through similar. I particularly love her post about 'What to do when your SEND child controls the whole family'.

Our eldest is a star; today she stuck up for her mum, had a quick but pointed word with her sister and then changed the lightbox to cheer me up.

For all those who haven't had the kind of Mother's Day they would have liked, big hugs. Sometimes we just have to go with the mantra 'tomorrow is a new day'.

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.