This is a letter written to help a dance teacher understand William’s needs before his first lesson. I’ve kept it as a starting point for other letters. I adjust the content each time, including or excluding information; on a need to know basis, depending on the recipient and setting. I always keep William’s well being at the forefront of my mind when deciding what information to include.
The aim of this letter was to help the dance teacher understand why William might appear not to be listening, may not be able to follow many of the instructions, why he might need to do his own thing (such as run round in circles when anxious) and why demands are so difficult for him to cope with. I know many people look at me like I’m an odd parent (and worse I’m sure) when I talk about using non directive language and reducing demands, so I keep trying to think of different ways to reach people; to help them listen to the reality of living with Pathological Demand Avoidance. I wondered if writing the letter “from William” might make a difference.
I’m pleased to say that this letter did help, in that it prevented the dance teacher from responding to William as a perceived “naughty boy” who was behaving inappropriately. She was able to accommodate his needs and allow him the space to express and enjoy himself. I also stayed throughout the session and intervened each time it was needed. Of course this isn’t always possible, but in my experience our presence can make a big difference to how others respond.
The letter might have transferable content, especially if you have a child who masks too.
Dear Teacher, / Friend/ Family Member or Club Leader…
“This Is Me” … I hope you can understand!
My name is William and I am 4 years old.
I love music and I love the song “This is me” from The Greatest Showman. I love expressing myself to music, especially by running round and round in circles.
Mommy has been talking to me about coming to your dance class. This is something I’d really like to do, but I feel very anxious about it. I feel anxious about lots of things, a lot of the time.
I am Autistic and I have Pathological Demand Avoidance (PDA).
I’m nervous about not being able to copy the dance moves. I’m often unsure where my body is in space, because I have a sensory processing disorder. This means that at times, I am unable to process sensory information well enough for function. I also have hypermobility and my gross motor development is delayed. My skills will be a little different to most of the other 4 year olds in your classes.
There are lots of situations where PDA really gets in my way! It might not always appear like this; but I really don’t choose to react in some of the ways that I do. Having PDA means that I find it incredibly difficult when people tell me what to do. My brain hears “demands” and “instructions” and interprets these as something I need to avoid at all costs. In my brain, “demands” trigger feelings of panic and fear. Sometimes this leads me to run off, refuse, shout, become distressed or to hold it all together and “mask” until I feel safe again.
I can behave differently to a lot of other children, and even though I’m only 4, I am already aware of this. I don’t want to stand out or look different as this makes me feel scared. I don’t want to look scared, as this makes me feel vulnerable. In order to feel less vulnerable, I try to watch how other people behave, and I try to copy them. Sometimes this works and sometimes it doesn’t. People call this process “masking”. To me, it really just means that when I am in unsafe territory, I “hold it all together”; my fears, my stimming and my outbursts of emotion, so that others don’t notice my struggles. My only safe territory is at home by the way, when it is just me, Mommy and Daddy.
Masking is incredibly exhausting!
When I’m back home, on my own with Mommy and Daddy, I feel safe again, so I don’t have to keep masking. This always feels like such an incredible relief. But this is also when I have to let out all of the pressure that has built up inside me (if I’ve managed to hold onto it that is and there are times when this isn’t possible). In situations where there have been a number of demands placed upon me, and there nearly always are because demands are everywhere, I become a bit like a coke bottle that has been shaken up. This means that when I get home, it only takes a tiny last jolt and the top comes off and the bottle spills over, or explodes!
If I explode it is because everything has become out of my control. This is when my body’s FIGHT/FLIGHT/FREEZE response kicks in. This is a survival response we all have, but in children with PDA this response is triggered a lot more frequently, especially when they are not in a PDA friendly environment, which unless PDA is fully understood and accommodated, is almost EVERYWHERE. Lately I have had a lot of FIGHT responses. And I HATE it!
After I have been in the survival mode of FIGHT, I feel really sad and I start thinking that I am a bad person. Mommy and Daddy tell me I’m not and they comfort and reassure me. I have heard Mommy explain that when I react with FIGHT, it is best understood as a panic attack. Mommy was able to understand this more fully after she read the wonderful work of Yvonne Newbold and “The SEND VCB Project”. Yvonne offers incredibly insightful information, delivers training workshops and runs a Facebook support group called “Breaking the Silence on SEND VCB”.
It makes me feel better when Mommy and Daddy try to understand. One day, when I’m old enough, they will explain more of this to me. They will tell me that I am Autistic and that I have PDA. This will help me to understand that my brain is wired a little bit differently and to know more about why I have lots of really amazing strengths, as well as some of these difficulties.
But this is not all gloomy, at least it doesn’t have to be. You see, when people around me are able to follow PDA strategies, it really helps! When my environment is right, some of my anxiety subsides. When I don’t have to be on such “high alert”; I can find sufficient calm to listen, to learn and to feel happiness. I am able to show more of the many wonderful parts of me; how loving, kind, creative, smart and funny I am. I have lots of interests that I love to talk about and one special interest that I would love to tell you ALL about. (I might need another whole blog for this though!)
Mommy has attached a separate document explaining what PDA is and what PDA strategies are. She has included some links to some really clever folk’s work that explains how you can support me and children like me. I really hope you can read them.
Most of all, I really hope this letter helps you to be able to see me and that it makes it possible for me to be able to have the same chance as other children; to learn from you.
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