I’d like to take you on a journey, a journey of discovery to show you a day in the life of PDA through my son’s eyes.
Understanding the impact of Pathological Demand Avoidance (PDA) on a child is a huge undertaking. As a mum to a boy with PDA, every day consists of trying to understand what is going on in his head, how something is affecting him and why he is reacting the way that he is. Then there’s the impact that it is having on us as a family.
We quite often experience the “opinions” of others. It is not uncommon to hear the phrase “your child is naughty”. In fact, we’ve been hearing that phrase since infants. Everyone has an opinion. But, until you’ve actually experienced it, lived with it, you are going to struggle to fully comprehend the impact that PDA has on a child and their family.
A Day in the life of PDA through my son’s eyes
If it’s ok with you, I’d like to give you an insight into a single day in my son’s life. It’s written as if he’s writing to hopefully give you a feeling for what he is going through each and every day.
*****
Unhappy in the morning
I woke up feeling unhappy. The day has finally arrived and I have a funny feeling in the bottom of my stomach. My sister is going away on a European Trip with the school. She has been looking forward to it for a long time.
I don’t understand
It’s the weekend and she should be at home with her family. We spend time together at the weekend because she is at school all week. Why is she going away?
I don’t understand
Morning routine change
We had to get up a 4am and it didn’t feel right. Everyone was tired. Why did everyone have to get up so early? It’s usually only me up early although I know that mummy is listening to me. I went to the school to see her off. There were lots of people there all looking excited. Why are they excited?
I don’t understand
Home again
When I get home, it is very quiet as my sister talks a lot, but she’s not here! I have my mummy and daddy all to myself. They are so tired though as we have been up for a long time. We are having fun together and, for a while, I forget that my sister isn’t here. At that moment, she isn’t in my thoughts because I’m doing things with my mummy and daddy. I like mummy and daddy time. It makes me feel safe and happy.
Everything is different
The evening routine is different. My sister isn’t here. It doesn’t feel right. We take it in turns to have a bath in the evening but she isn’t here.
I don’t understand
Bedtime
I don’t want to go to bed because it doesn’t feel right. I shut the outside world out and cocoon myself in my own little world. It’s safe in here, it’s predictable. What are those voices that are trying to invade my safe place? Daddy sounds different. Why is he telling me that I’m ignoring him?
I don’t understand
Mummy is talking to me but her voice is really quiet. I have to listen hard to hear her and that means coming out of my safe place. I don’t want to do that! My bedroom is my place so I’ll take myself there. At least then the voices will stop. Why am I being called back? All I did was stand up to walk away from the noise. I needed quiet.
I don’t understand
Alone with my thoughts
Now I’m on my own and my sister enters my head. I miss my sister. She should be here with her family, with me. Why did she want to go away? Why has she left me?
I don’t understand
I feel sad and worried and I want my sister home. What happens if something happens to her? Why do people want to go far away from their family? I never want to leave my family.
I don’t understand
My mum has come into my room and is talking to me. Why has she come into my safe place? I just want my sister home. Why have things had to change? This doesn’t feel like my safe place anymore because things have changed. I don’t know what to do so I don’t do anything because I don’t feel in control. I wrap my arms around myself and start rocking. The movement is familiar and comforting.
I don’t understand
I feel odd and my mum tells me that it’s ok to miss my sister because that shows that I love her. Of course I love her, she’s my sister. Why has she gone away?
I don’t understand
How can I go to sleep when things don’t feel right? My sister is missing and it doesn’t feel right. The routine, my routine, has changed.
I don’t understand
I can’t do the things that I know I should be doing. Everything sounds so loud that it hurts my ears. Things just don’t feel right. There is no order. Without my routine I feel lost, I feel out of control. When I’ve felt like this before, adults have been angry with me, they tell me that I’m naughty. How can I be naughty when things don’t feel right?
I don’t understand
Rules are rules
Why do people do things that are wrong? Going away from your family is wrong. Not sticking to the rules is wrong. Why do I get into trouble for trying to tell people to do things right? Rules are rules. People should follow the rules.
I don’t understand
Night time is a scary time for me. I don’t like the dark because I can’t control it. I’m not in control of my dreams and that makes me anxious. At least that’s what mummy tells me. I just know that I don’t feel right. I don’t want to go to sleep. When I’m awake I’m in control of my thoughts. I know that mummy and daddy want me to go to sleep but I just can’t. My mummy and daddy understand that I’m not being naughty and that I just don’t know how to be any other way.
I am not naughty
I am autistic with demand avoidance traits and I see the world differently. This means that I have an anxiety based need to be in control. If I don’t have that control, my anxiety takes over and I panic. Please understand, I’m not naughty, I don’t want to be naughty. I don’t understand the world the way that you do. Please help me to cope by giving me choices so that I can have control of my world. Please don’t judge me and don’t judge my parents. They understand my need for control. My parents are not letting me be naughty, they are just picking their battles in a way that helps me to cope with the world.
*****
I hope that this has given you an insight into the world of PDA. If it strikes a chord with you on any level, let me know by popping a comment below.
Until next time, stay strong.
Lyn
