Thursday, 16 November 2017

What sustains Us?

Violent and Challenging Behaviour (VCB), it’s rarely talked about, yet it’s something we, as a family, live with every day. Some days are worse than others.

The other night was a bad one and, for the first time, I posted a very raw statement about what had happened that night on my Facebook page. There was, as one friend observed, “an outpouring of love” at seeing it, and it was amazing to feel that level of empathy coming towards me, but it was also kind of embarrassing, I’m not very good at accepting loving support. 

Tonight: repeated and sustained punched, kicked, stamped on, spat at in face, back, arms legs, stomach, verbal abuse, scratched

I realised that some who might not know me so well could think it was about my husband, and that I was experiencing domestic violence and that couldn’t be further from the truth. I started to receive private messages from people who were worried for my safety. People offered help and were checking in to make sure I was ok. I’m OK.

All were supportive and not one single person judged me or my son or my husband, I’m so grateful for that. It was a beautiful thing for me to see how people care and want to help if they can. We often feel very isolated as we’re limited to what we can do, where we can go, how we do it, when we go out, if we go out. I mean, I’ve lost count of the many times we’ve made plans and had to cancel them or ended up just one of us going out with our other son on his own, so he doesn’t miss out while the other one of us stays at home to manage the VCB of his older brother.

I understand now that this experience of violence is so normal for me, for us, that at the time, in my heightened state of stress and upset, I couldn’t see what that would look like to the rest of the world. Sometimes I get really upset.

One friend said she thought it was a good thing that I put it out there so boldly and so raw because she recognised that people don’t talk about this behaviour. She’s absolutely right. 

H was diagnosed autistic 3 years ago, but we’ve been coping with this behaviour since he was about 18 months old. Unless you have an autistic child, you simply cannot imagine what that’s like. We love both our sons so much but when H goes into ‘meltdown’ we wish that he wasn’t autistic. When he presents us with VCB we try so hard to figure out what he needs and how to avoid the meltdown. The meltdown is brutal, it’s horrific. It destroys me.

It’s physically violent and exhausting as I need to use ‘safe-holding’ to try and prevent him from hurting us and himself. The other night – not the one I posted about, but the day or two before, I lose track there’ve been so many lately, he hit his hand off the radiator until it was bruised and bleeding, he was feeling so angry and frustrated then he closed himself in the living room and cut half his head of very long hair off. I call this self-harm and worry a lot for the future. Meltdown can last from 10 minutes to an hour or more.

It's emotionally exhausting as I struggle with him physically and all the while I’m thinking, no mother should have to restrain her own child while he swears every shade of blue at her and highlights every tiny failing she may have. When he’s like this, he’s not really my son, he’s disappeared somewhere. It’s taken me such a long time to understand this. Too long. No-one tells you about this. You get your diagnosis and a bunch of leaflets and sent on your merry way. No one tells you how to cope when he tries to destroy the flat, your belongings – and he’ll go for what matters the most to you. Or how to cope when he punches you in the stomach or back, tries for your face, stamps on your bare feet, kicks you in the shins – he’s strong now and getting bigger every day. 

It’s not easy, and I’m one of the lucky ones; a couple of years ago I was in Aberdeen for some training and the friends I was staying with recognised I was struggling and provided me with a one-to-one session on safe-handling rather than restraining and what a difference it’s made. There was so much I didn’t know and being able to support him in a safer and more positive way has been amazing. However, psychological services  don’t tell you about any of this and as he got bigger and stronger it became more important to know this kind of stuff.

Someone asked how can an almost 11-year-old hurt a big adult like me but if you’ve not experienced an autistic meltdown in full flow you can’t imagine what that’s like. He comes at me like a wild animal and I’m trying to get into a safe holding position whilst not hurting him and taking the blows, which are powerful and really hurt. 

Given that all behaviour is communication, I try very hard to remember that it’s not personal and he feels awful, has lost all control and is frightened. This is his way of looking for help. When he starts to feel meltdowny, sometimes, he’ll just come up and try and punch you in the face. That’s his way of saying, help me please, I’ve lost all control of my body and my brain feels funny, I don’t know what to do. 

I can’t imagine what that’s like.

Another friend asked about support from Child and Adolescent Mental Health Services (CAMHS). I’ll keep this bit short or I’ll end up ranting. We did have one appointment with CAMHS and the psychologist explained he’s not disabled enough for a) further treatment or sessions b) an Occupational Therapist and c) Melatonin on prescription. We use melatonin to help him get to sleep, it’s expensive. I did tell them about his suicidal ideation and self-harm but no, he’s not ‘disabled’ enough. We live in what I now refer to as The No Man’s Land of High Functioning Autism. Our school is currently re-referring him to CAMHS, we’ll see how that goes. I know I’m not alone in any of this because there are great FB groups for parents and carers of autistic kids and we’re all sharing the same stories.

I have some friends with autistic kids and one of them said she would rather her child attacked her than herself – I totally get that. Parents of autistic kids know they will turn on themselves and the rate of self-harm with autistic children and young people is high. 

One of the aforementioned friends said she had no idea this was going on in our lives and I think when I wrote that post, in that moment, it was a cry for help, to be noticed, for people to know what this experience is like even in a little way. I had no idea this is what my life as a mother was going to be and it’s an aspect I don’t particularly like. Maybe another time I’ll write about all the positive things and how much I’ve learned and grown as a person and a parent, but for now I’ll leave with this;

Another friend said, Sometimes the most powerful thing is to know your experiences have been witnessed and rediscover that you are loved. Sometimes that sustains you.
So, I say, thank you to all of you, for witnessing my experience.

Sunday, 26 March 2017

I'm proud to present the Out of Harm Toolkit which was launched on Friday this week at Ardrossan Youth Centre. It was well attended and we received positive and encouraging feedback from the audience.

Once again the young people involved in the project were there and courageously shared their stories reminding all of us of the importance of this work.

I'm looking forward to presenting the project at the Storytelling for Health Conference in Wales in June and hope we can find funding to take the toolkit and the conversation guide into further development and provide more therapeutic workshops for young people.

My deepest gratitude goes to Rachel Jury the Director of Confab for having the vision and understanding to take on this project.

Monday, 9 January 2017

Out of Harm

Out of Harm
So this happened and now we're working on a Toolkit which we're launching in March this year. 
The group of young people we worked with gained a lot from the workshops and I feel proud of them. They shared their stories with great courage, not only with each other but at the public events as well. It was a privilege to be able to support them to do this. 
I'll post more about this soon.

“Thanks for everything you've done. It has been a wonderful pleasure, to have the chance of experiencing all of this with everyone. It has all opened my eyes - and my heart - and I can't thank you enough!” 

“It was satisfying and helpful to explore the issues I went through in a safe and welcoming place that the Out of Harm project provided.”

“I felt a sense of accomplishment.”


Michael Williams StoryCoach

Wendy Woolfson is a professional storyteller, workshop facilitator and the founder of Stories for Health, a non-profit organisation promoting storytelling as a healing art. I have had the pleasure of working closely with her for the past three years as both her colleague and coach.

Wendy is a superb organiser, having conducted numerous storytelling workshops in Glasgow and Edinburgh. She also organised the successful Stories for Health Symposium in 2010, attracting a large international audience and helping to establish storytelling as a healing art in Scotland. As a result of her work, Wendy as earned a well-deserved reputation for excellence throughout the UK and beyond.

It has been a privilege to have worked closely with Wendy in the development of her storytelling skills. During the past year, I have mentored and coached her as part of a small group of adult storytellers. She has not only shown herself to be a confident storyteller with a wide range of skills, but also a supportive colleague helping others to develop their talents. Wendy is an excellent communicator and deep listener whose storytelling and counseling skills serve her and others well. She is a tireless promoter of storytelling as a healing art and has worked with children, young people and adults in this capacity. Wendy is passionate about storytelling; being in her company is a breath of fresh air and fills you with inspiration. I can highly recommend her to you.

Lucy Trend Director at Thai Massage Training Scotland

Wendy is an inspiration to work with. She brought so much creativity to the workshop, and responded to the group dynamics with a skill that got everyone involved, engaged and the event was a great success for all.