Seattle Washington 9th International FASD Conference

I had been looking forward to attend the 9th International FASD conference in Seattle, Washington for quite a  while, each day building in anticipation. This  because I wanted to be able to share my experiences, strengths and challenges living with FASD. Then to be able to relate my story to other peers, adults and family's so they understand just cause I am on a stage speaking I am not perfect and have lots of struggles in my life, as does my family. I have also always wanted to travel around the world and share my lived experiences, strengths, victories and difficulties living with FASD, so others understand they are not alone in their experiences.

For some time, I have been going through a rough patch, feeling lost and very frustrated; why is this you may ask? Well, I wish I knew completely... There are the challenges of living with FASD, the all to common mental health issues, learning disabilities, lack of understanding, lack of supports and more and just being different and trying to find how I fit in a society that generally ignores FASD. Certainly giving a list like that does not help me get out of this rough patch I have been in for a few years. Still I will persist to try and figure things out as I have too much to do and accomplish in my life for a rough patch to stop me accomplishing my goals.

I was very lucky I got to attend the International FASD conference in Seattle. After many different workshops and ice breakers I have seen how different life experiences, actions and even words affect other peoples lives on a day to day basis. Then when I say people I mean other people and families living with FASD. It really helped me realize that I'm not the only one struggling through a rough patch and other people struggle with the same or different problems often,  just like I do. Then there are others who have got past their rough patches and are doing really well, in life, having families, jobs, careers and they are there to help guide us who are struggling to find our own path in life. So I think to myself "wow, aren't we intelligent human beings"  and why are we so tough on ourselves often being our worst critic. Why? yes, it may be harder for us to do every day activities other neurotypical people take for granted.  We use up a lot of our brain power to even engage others and show up for things like school.  It may often be difficult to attend classes or even try to show up for school or work as we aren't understood and its  also very overwhelming and frigging exhausting for most of us.  I say us loud and proud.. FASD proud, with what we have gone through or go through needs to be heard or said very loudly. We need to start changing some laws and get more information out there how to support people and families affected by FASD and how to prevent it! It is NOT okay how we are treated and pushed aside, nobody should ever be pushed aside and forgotten that is discrimination and as a world we teach that this not okay. Yet we still discriminate against those with disabilities, mental health issues, health issues, poverty and more and that is disgusting. How is it we can live in such wealthy nations like Canada and the USA and the people in need of help the most are forgotten and pushed aside as if we are worthless and an inconvenience to society. 

Going to the International FASD conference in Seattle was quite the experience for me. I am very lucky to have had the experience and be able to share it with my friends from the Rural FASD Support Network as well as my mom who also has FASD. I have always lived in South Eastern Ontario, Canada and while I have traveled with my family I have never left Ontario before. Much less flew on a plane, been to another country or been to a city like Seattle or Vancouver,  British Columbia.

Getting to and from the conference was such an adventure for me and an experience that I will never forget. Then all the people I met, the things I got to see and do will be memories I will cherish for a lifetime. Fortunately things went better getting to and from the conference, and at the conference than the day I was leaving for the conference from home. I had a great sleep, got up and went to finish my laundry as there were a few things I needed cleaned up to take along. Well if I didn't go to dry my clothes quite a few times and the dryer did not get hot, got hot, but would stop and I was running out of time and could not take wet clothes, so now what. So dad piles all the wet laundry in a basket and heads to the laundromat with the few coins we had in the house to dry my clothes.  Well what happens the dryer he picks runs for a bit and stops, he then tried a few other dryers that did not work or stopped till he finally found one that worked. Of course at this point dad is almost out of change and there is no way to change bills to coins. But a really nice person helped dad out and put the last few coins in the machine to dry my clothes.

I got to the airport and wow it was so busy, talk about a sensory overload, and there was so much walking. Then I was all hyped up knowing I was going for my first ride on a plane so I was really excited and talking mile a minute to anyone unfortunate enough to be near me. We got to the airport early, and of course our flight was delayed, then we finally get on the plane and end up sitting in the plane for what felt like hours till we finally got to go. Oh boy the feeling when the plane got going I was holding on for dear life and then there was the butterflies in my stomach as the plane lifted off. That is a really odd sensation but I loved it. We left and it was bright and sunny, it was so cool seeing the city of Ottawa below us and how the people and buildings slowly became smaller and smaller and eventually disappeared. It is so cool flying in a plane, seeing the lakes and rivers and how farm fields look like a patchwork quilt. Then eventually you get high enough in the sky all you see is clouds, but you can check your progress on a screen in the plane that shows you where you are, your speed and what province you are flying over. Then as the clouds would clear here and there you could see the sunset as we chased it across Canada as we flew west. The sunset was so beautiful, hues of orange and blue and red, it was so calming to look at a sunset and it  really makes you understand the beauty of nature. Then seeing the mountains in western Canada was so amazing, they were topped in snow and so beautiful, it is hard to describe. Then by the time we got to Vancouver it was dark and we could see the lights of the city light the sky as we approached the airport.

Then when we get into the airport just like the movies is our limo driver is holding a sign up so we can find him. Wow new experience again, I have never been in a limo, much less a huge stretch limo and this thing had it all. You should have seen the light show and the stereo system in this limo it was so cool, we were all so tired but I was singing my heart out with my friends we were so excited. That was quite the ride from Vancouver to Seattle, I am not sure how much our mom's appreciated our singing and nonsense but I am sure we were entertaining. By the time I got to my room in Seattle, I was so tired I just crashed. The next day I woke way too early, that time difference thing was really messing with me. So this day was reserved for sight seeing when in hind sight I maybe should have just stayed back at the room with my mom but I wanted to see things. Well lets just say when it comes to jet lag I can be a bit of a bitch and I am not sure I was much fun to be around that day. 

Seattle was a fascinating city to see, there was the monorail, the space needle, Pikes Market, the Pop Culture museum,  aquarium, and  amazing graffiti all over. Then we got to the parts of the city that were so sad with all the poverty and people who you could tell must have a very difficult life. Yet I was really shocked to see how many kids were living on the street here.  I was doing the touristy thing feeling kind of sorry for myself as I was tired and could not buy much as I am trying to save money. Yet here I am buying coffee at Starbucks and here are all these people living on the streets. It really made me think how lucky some of us are and how we complain to ourselves feeling sorry for ourselves when we should be so grateful for what we have. My mom and dad have always told me there is a very fine line between having lots and finding yourself poor and wondering where your next meal may come from. It does not take much to happen in your life and you could find yourself poor so have respect for those people on the street. They are not here by choice, but circumstances in their lives have put them there, and next year it could be you, remember that.

The conference was amazing there were so many people from all over the world. There were the professionals and then there were all of us who live with FASD everyday. It was amazing so many people to talk to from all walks of life, you could see those who had money and those who did not but at the conference we were all equal. All of us in our own way affected by FASD whether living with it, supporting those with it, or researching it. It was fascinating listening to all the speakers, yet I would often find myself tiring as the day went on and I had to leave and rest. If there is any regret it would be the time I just did not have the energy to attend the conference. Then came my turn to speak at the conference, and I was terrified. I went to go to the podium and I couldn't speak so I ask my mom to join me so I could hold her hand. I was so scared, so sure I would mess up and make a fool of myself, but as I spoke or my words faltered sometimes no one judged me. I eventually let go of moms hand as I relaxed and told my families story. My families story is not a happy one, it starts out happy with my brother's and my adoption. Yet as time goes on living in a world that does not understand FASD slowly broke my family where we all struggle in our own way trying to support one another. 

I did not stay too long after I spoke, I went to my room and rested I was so exhausted from speaking. My mom stayed with everyone and she said I should have stayed to as there was so much conversation started by my speech. Everyone started to share what their lives are like living with FASD, their struggles and there victories but the point of my speech was to be honest that I am really struggling right now and it is ok to say that. So many people put me on a pedestal as the great FASD advocate Shelby Survivor as I call myself in my blog but I so often feel such a failure myself. That I constantly mess up, make poor or impulsive decisions and get hurt so often trying to find people who accept me for being me. I told how my brother was abused in school by a school team that did not understand FASD. How my parents got social services involved but even they did not understand FASD and just blamed my brother. Then how this affected me seeing what was done to my brother and how it was so much like my birth home. The eventual lawsuit with the school board, and how we were one step away from a Human Rights trial to try and solve things but we were so tired at home we just stopped there. My brother was pulled out of school for 1 1/2 years by a psychologist from Family and Children's Services to recover from what was done to him. On his return to school he ran the halls for 2 years hiding from a school team that was no longer there but he saw them in his mind and was just as terrified of them. During this time Family and Children's Services were called about my family the only safe place my brother and I knew and I got so scared I ran the halls hiding and hid at home sometimes sure someone was going to take me away from my home. If I look at my own mental health problems, and my rough patch in life now it likely started about this time as I have never really recovered from what was done to my family from a world that does not understand FASD. 

Would I go to another conference again, damn right I would, but I would take jet lag into account now and give myself a day to rest. Would I speak at that conference, I sure would and I would encourage others to do the same. It is so empowering for us to speak and be heard, to hear others speak and tell what their lives are like living with FASD. That it is ok to mess up, we all do it and we all come from our mistakes stronger people who will make a difference in the world if we are allowed. If there is one theme I heard from people is that we are all sick of being told what we can do or accomplish without being given the chance to try. If I am really proud of one thing it was to say to everyone at the conference I am tired and I am broken and I need their help to speak up for FASD and disability rights. That we need to gather at things like the conference and support groups to support one and other unifying our voices to be heard. So while I regret not attending the conference as much as I should have, I needed sleep sometimes. Then there were the times I just got overwhelmed and sat in the lobby with others and we discussed and supported one and other with our life experiences living with FASD and isn't that the point.

So while I may be in a rough patch now when I feel better I will be bugging those in power and speaking up for FASD rights more. Then asking others to help me organize a local conference for those of us with FASD where we get together to just talk and support one and other and plan and strategize how we can unite as a single voice to be heard by our provincial and federal governments. So looking back to the conference I am really glad I attended. It helped remind me why I started a blog at the age of 10 on FASD, PTSD and trauma, talking about my experiences so others knew they were not alone. So in conclusion I will always be grateful for this experience and hope to look forward to many more.

Thanks for taking the time to read this.

Shelby