Why don’t you come to parties any more?
I don’t feel like I can be happy at parties. If I am at your party it means that my daughter is without her support. Me. I will worry about her the whole time that I am away from her and I cannot enjoy myself if she is in distress. Which she will be if I am too far away or away for too long. I do not like to put on a lie if you ask me how I am, or how my daughter is and the truth is, I am unhappy most of the time. I do not want to come to your party and pretend to be happy and I don’t want to come to your party and feel sad.
Why did you change from being the life and soul of the party, to quiet and serious?
When my daughter had a sudden and shocking breakdown at the age of 12, my entire life was turned upside down. Many, or most of the people I considered friends, did not understand or know what do do to help. Some didn’t even know I needed a friend or help. This upset me greatly and my view on friendship changed forever. I don’t think I will ever be that girl again.
Why have your not been able to find a Doctor or medication to stop your daughters mental illness?
There is nothing I want more than to find a cure or a tablet and some therapy that would make all of this stop. To take away the pain and give us our lives back. We have tried and tried with traditional methods and have had the most petrifying results from pharmaceutical drugs and standard psychology techniques. However bad it gets, we will not put our child at risk of death by altering the chemicals of her brain. We are searching daily for ways to heal her brain and body, not cover up and mask over what is really going on. This journey is long, it is lonely, it is controversial. My trust in the medical profession, due to my experience, is zero.
Why do you change plans or say you can’t make it at the last minute?
I try to keep some kind of life and if that involves another person, inevitably, some warning or an arrangement has to be made. If you have gotton an arrangement out of me, feel honored, mostly I avoid plans now because I hate so much to let others down. If you want to help me or see me, be flexible and last minute, be available for me.
What do you want me to know that you are not saying?
Last night I was woken 4 times. I don’t know if I was in a light sleep or a deep sleep or a mix of the two. I wake suddenly with a shock and go straight into fight or flight mode. I have to go to my daughters need. She is helpless for so many simple tasks, like getting something from the other side of the room that she needs. She stays awake and in pain and routines trying to dress for the next day so that she can spend a few hours of normality with her friends. I am exhausted, but I cannot change how things are.
What would happen if you put your foot down? Don’t kids just have to get in line?
I know it’s almost impossible to believe or understand, but PDA means my daughters brain is wired to a different system. If I fight against her, she will fight back. She will never back down. She will rage. She will become violent. She will kill herself. This is the extreme and I do everything in my power to keep those realities at bay. This is not a threat or a contest or emotional blackmail or tricks to get her own way. This is how it is. I know this because I have been on the edge of that cliff. Many, many times. She will never back down. So I have to, or we would not be here. My daughter is not naughty. She is not evil. She is not playing up. She is not deliberately defiant. She is not badly parented. She is not spoiled. Her brain is set up to block, question, defend and avoid things she perceives as danger, even though to others there is nothing to fear.
Why do you let her speak to you like that?
If you are referring to, why do you say nothing and remain loving and calm if she shouts or swears to go away, it’s because I have the gift of unconditional love. There is no set condition, environment or rule by which I give love and understanding to my child. When she comes to me later and cries, when she comes to me later and says Mum, I am so sorry for what I say, I know that she cannot help how she behaves in those moments that you judge from your own set of social and moral codes. My inner strength is so fierce, no judgement from others can ever hurt me any more and neither can words said in fear. Only true love allows me to be spoken to like that, and that is the gift of PDA.
Why do you do so much for her when she is clearly physically able? From the outside it looks like you are her slave, that she has you wrapped around her finger and you are stopping her from being independent.
I can see exactly why you would evaluate like so. You have not walked in our shoes. You are not here for the tiny tiny tasks that you do without thinking. Every task from eating to shoe laces is a marathon. Imagine if you had been at a conference all day, using parts of your brain that you don’t exercise much, listening, learning, performing. You come home in need of a rest. There was just so much to take in and from all that thinking, well, you just feel exhausted, pretty wiped out. That’s how my daughters brain feels every day, just from doing the tiny things you do without having to think. You came home from the conference, really tired and you asked your partner to make you dinner, not because you couldn’t physically make the dinner, but because mentally, you were burnt out, too tired to think any more. This is how my daughter feels every day. I help her to save her some of the energy she needs. I lighten her load. I also support her to push herself when she can and do those things, when she can. I help her to keep her self esteem high, even when she feels so useless and embarrassed of her inabilities that she wants to die. My silent help, without question when she needs it is not a badge of honor, or self sacrifice, it is a necessary part of living with PDA.
Why do you always let her get what she wants?
Impulse control or lack of it is a big part of what makes up PDA. Not being able to have or do what she needs in that moment is a massive fight or flight trigger. Getting what she wants or feels she needs in those moments of lack of control, regulates her fear meter. It’s not always ideal, and yes, we probably have too many collections, but we do what we need to do to chalk up another day on this planet.
Why do you never ask anything of her?
I set things up for opportunities with no conditions. She deserves free will as do all humans, but we are so blinded and constrained that we can’t even see the invisible prison we have built for ourselves. I would not have to be writing this post if this were not true.
Why do you seem so sad?
I am sad because I see the struggle my daughter faces every day. I am sad for the lack of understanding and the need to dispute the people who are telling the same story with PDA. I am sad because I see the talent and potential in my daughter and the gap she has to cross for those attributes to be seen.
What can we do to help?
Love us without conditions. Listen to us. Believe us. Believe in us.
Thanks for reading, please share if you think this will help anyone.