Why write about PTSD and FASD

Well first off this is a blog about my experiences as "Shelby Survivor", and PTSD  has been a big part of my life and I want others to understand there is no shame in a past like mine. Another reason I think PTSD and trauma should be understood when talking about FASD is that those of us from the foster system will have a much higher chance of having FASD. Like 80 to 90 percent of us affected by FASD  at my support group Rural FASD has some kind of story in our life being crown wards or in foster care or adopted. 

For me, there was the trauma of my birth home, where my brother and I were removed and as my worker said to me recently if we had not been taken away one of us would have ended up dead. Looking back from what I can remember being dead would likely have been a relief from what went on in my birth home; even though at the time it was normal to me. I have no connection to my birth family, and I can not have any, there are court orders saying my brother and I can have no contact, as we have quite a history of intergenerational trauma.

Then there is the trauma of foster care, you are removed from your birth home, put into a foster home, and you lose all connection to who you are. It does not matter how bad your birth family was, they are still your family. When taken from your home you lose not only your family but everything that was yours, your family traditions, your neighbourhood, your friends, your toys, your bed, the familiar smells of home and those spots you hid in to feel safe when things were really bad. Then there is the trauma of the foster system, you are physically safe but you are never home. You are in a new home, with new people, new smells, new traditions, and a new bed that does not feel right. Then you never know when you will walk in the door and your bags will be packed and it is time to go to a new foster home. So what I hope people understand when you are in the foster system you are hopefully safe, but you are never home. One of the worst things done to me in the foster system was to be in a new home with my brother and I went out for lunch. Doesn't sound that bad except when I got back from lunch, my brother had been taken to a new foster home and I rarely saw him for over 2 years. Then the day I heard he had been adopted and I was not adopted was devastating, my last connection to family was gone, and I thought I would never see my brother again.

Then there is the trauma of adoption, adoption sounds good, you finally have the forever home you have been promised again, and again but you have had so many promises made and broken can you really believe anything. They call your adoption home your forever home but they called your foster home, home, and it never was.  Just because you are told this is your forever home does not make it forever, that takes a long time to build trust that it is your forever home. If I look back the first I was in my adoption home was to visit my brother who was already adopted. This was not my home I was only visiting for perhaps an hour at a time once or twice a month. It did not take long and my visits turned into foster relief where I got to stay overnight for my visits.  What I did not know at the time though was I was having these overnight visits because my foster home was about to fall apart and I would be moved to a new foster home. Then during my visits with my brother's parents they were to watch me and give their opinion if they thought I could be adopted. Understand because of what my brother and I had been through in our birth home it was thought we may never recover and be adoptable. That and we were crazy together, which was why we were separated in the first place. Yet as my parents say they like a challenge so they made sure my brother and I had a forever home together.

My parents once said to me they thought the worse thing about adopting my brother and me was hearing what happened in our birth home as my brother and I started to feel safe and could say what happened to us. I have trouble imagining what it must have been like for my parents with my brother coming to their room to sleep between them at first unable to talk and explain what was wrong but held onto my mom and dad in terror of his nightmares every night. When my brother learned to speak at age 4 - 5 he could say it was nightmares about the "bad man" or people who used to hurt him. Then when they adopted me, they had to listen to me scream in my sleep night after night, crying out and asking for it to stop, that it hurt. Yet who would ever think some of the worse trauma my parents, my brother and I had to put up with took place in school and dealing with local services trying to find anyone who understood how to help. 

 School, that place full of well-meaning professionals who don't know shit about trauma or FASD, then depending on the principal or teacher you have they may or may not understand how to help. With trauma and FASD more likely due to the mistakes of the school team, you will be labelled as trouble, sent home, suspended and ignored given an I-pad to waste your day away, and never get an education. Yet as a kid who has gone through what I did to get taken from my birth family I can tell you that you never touch without permission. If you do touch without permission there is a good chance you will get hit really hard by me or my brother if we are startled or upset. I am not going to go into a lot of detail about the abuse or mistakes that took place in school, that is a blog entry all on its own. Yet being in school now that I am older and better able to understand, I can see how PTSD and FASD's sensory overload was such a huge part of my brothers' and my life. Add to that FASD and the poor regulation skills that go with FASD and my brother and I were in for a tough time. I wish I could talk to the original school team and ask them what the hell were you thinking, seriously the strategies you used were really stupid. 

It is not that my parents did not try to get help with school, phone call after phone call, driving around asking for help from anyone who understood the effects of child abuse, PTSD or FASD. Then I remember the whispered conversations of my parents, the phone calls and all the people who came to our home. All those people, were terrifying as every stranger was someone who could take me or my brother away. Then if there was a stranger in school or someone who seemed out of place at school I would run the halls terrified I was going to be taken away. There is more to that fear than I have said here and as I am trying to put that into my past now so I will not dwell on it. Yet as my parents would say none of the original school team were bad people just uneducated. They may have had big glossy binders of school policies and mental health support but they didn't get it, yet to think all the services my parents talked to didn't get it either. The professionals would get together talking to each other deciding what was best leaving my parents out of the conversation which in the end really damaged my brother and me. Eventually, my brother was removed from school on hospital leave for 1 1/2 years at an attachment therapist's orders who said "get him out of that school now before any more damage is done".  When my brother finally got back to school he ran the halls hiding from a school team who were not even at the school anymore, but he would see them in his mind and be terrified for almost 2 years they would hurt him again.

So to all those people who have messed up along the way, the book-educated individuals, and the services without lived experience who ignored their jobs and did nothing to protect or help my brother and me, I wonder what were you thinking at the time. My hope is someday you understand how badly you messed up.  To those people, I say I forgive you, and I have important things to do rather than wasting my time hating you. In many ways, you did not know what you were doing, there is not enough awareness of trauma and FASD. Yet seriously I went from a happy child, to terrified, all in one day in school, how can you not understand as a school team this is your fault I became terrified. How every time you pinned my brother a kindergarten kid to the floor and he would get loose and come at you fighting could you not understand he was defending himself, but you would say he was bad. Then when he would try to run away from school to go home where he was safe how could you keep asking are there problems at home. 

I am not sure how this can be fixed, schools and services need a lot more awareness around trauma, intergenerational trauma and FASD, actually all disabilities. Schools need to be safer places than they are but that will take a culture change from the janitors all the way to the board. Even the students need to be educated, that when someone is a bit different they need friends and not to be pushed aside and made fun of. Schools need to stop telling themselves they are doing such an excellent job because they are not, there are those of us who are being left out and pushed aside. Even if that is one or five percent of the school students that is not acceptable that we are left out, even if you have the highest graduation rate at say 90 percent, how were the 10 percent left behind?  Just stand back and watch how kids are dragged through the halls when they need a moment to calm down. Watch kids get screamed at when they are struggling and wonder why those same kids struggle even more each time they are not understood. Look at the kids hiding in the washroom or self-medicating that are not bad kids but struggling and labelled as trouble when all they are looking is for relief in any way possible because they are not understood.  So how will this culture change take place it won't happen easily, actually I think this will need to come from federal and provincial governments changing the school and services system for everyone through better awareness of mental health, trauma, intergenerational trauma, FASD and all disabilities. That and school boards need to stop congratulating themselves on the good job they are doing because you are failing many of your students most in need of help.  Next to our homes and families, school is one of the most important places in our lives, but it has to be a place everyone can succeed. So while our schools are generally doing a good job I just wish boards would acknowledge those of us that they are not helping prepare for our future.

So if you are in school or have children in school and things don't seem right they likely aren't, seek help, and stop thinking the schools or services know what they are doing, that was my parent's mistake at first. Get vocal, and protect yourself or your child because a lot of damage can be done by well-meaning individuals who don't understand what they are doing. So the only way we can start the changes is to make people aware, so speak up to anyone who will listen. Together we can make a better world for everyone through education and awareness.

Shelby