Sorry, here I go again, it has been too long.

 I have not written in so long again, life has not been kind and I have been trying to look after myself. I have so much started for my blog, and just as much not finished. I try to write and some how I feel enormous shame, that I am such a mess and I can not think to write. I was to write how grade 11 ended as things were not going too well and my school team was struggling so much to support me with so little understanding of FASD and what that support would be like to give me real help any of us with FASD deserve. I can't say they did not try, but they really do not understand FASD or coregulation and then things really started to fall apart after I was raped. No one could help me including myself, being violated  in that way is so personal and leaves you with feelings I am still trying to come to terms with. I ended up putting myself into a program away from school where I could get a quieter environment, away from all the questions about what had happened to me. 

Yet tonight as I remember looking for the courage to speak at the Kids Brain Health Network conference in Ottawa, I am so happy these conferences take place.  I think how so many people I have encountered over the years say they understand neurodevelopmental disabilities like FASD, but do they really, much more education is needed. A four hour class, or a day class does not make you a professional on FASD, but it is a start and I thank them for trying. I have had just as many people say they understand what it is to be raped, but the only ones who truly understand the real feelings are those who have experienced it. You don't learn this in a book. You can have compassion and patience but I suspect you will never understand the feeling of looking at a world that does not truly accept the neurodiverse for who we are. Each one of us unique, each one of us a human, each of us has our own talents and superpowers.  Still we need the opportunities and a education for the best life we are capable of living. Yet that best life will only come with better understanding, legislation and research.

Unfortunately with the misunderstanding of how to support those with FASD it will be difficult if not  impossible to have our best lives possible. Yet add to that those of us who were crown wards with a history of developmental or intergenerational trauma and things become even more complicated. It is strange I can look to my friends and peers and often give such good advice, but I am often unable to do so for myself. I do things for myself to support me that help. I can also offer  support to my friends as well and as I say I can usually help my friends better than I can help myself. Yet the secret when offering support to those with disabilities is I support with way more patience and understanding than many of us get from the rest of the world, I can do this because I understand how it feels. So often when advice or support is given from those who do not understand it is given in a way that shames the person who is struggling. Like struggling in life with FASD or any disability is done on purpose, a lot of times we struggle because we are so damn tired of not being heard.

This summer I really got to see the importance of working on a project for Adopt4life as a FASD peer mentor. There I got to work with people affected by FASD from across the province. I got to meet other FASD advocates, I got to hear about others and their struggles and successes, I got to see I am not alone with my disability. I can't say how empowering it was to hear everyone's story and share so openly with each other. I had my struggles to during this time, I was so overwhelmed at times I forgot a few sessions. I felt so horrible, like I was such a failure. Often my dad helps me keep track of my appointments, and calendar, but with his work, my struggling and the upset at home after the rape even he was unable to cope and help keep track of everything. My lead Tracy from Adopt4life was amazing, she understood right away. She did not shame me, she did not criticize me, she just offered support and understanding. Yet Tracy is a mom of adopted kids as well, and has kids with FASD so when she says she understands, she really means it. Then when Tracy had family emergencies and she had to look after family, Nancy from Adopt4life took over for a bit. I don't know Nancy to well but she had such a connection with all of us I want to know her better, I know she must have an amazing story. I got to listen to and speak to lived experience FASD advocate, CJ of the FASD Changemakers. I felt so inspired by CJ's lived experience words, not words learnt in a class or book but words of real understanding. Seems my conversation scared some folks a bit as I have been in a very poor place in my life that seems so hopeless and futile to try and carry on. Yet peer to peer CJ understood immediately what I am feeling, then others in the group spoke up to offer support and understanding offering hope for the future because they know how I feel and when they say life will get better I believe them.

I know now how important peer mentorship is, it is an amazing way to support each other, and that does not matter if that is those with FASD, those supporting those with FASD or their friends and families. I suspect this would be true for all of us with any disability, that lived experience and peer support is so empowering. I know if I could get the help to fill out the paperwork and get the grants I would love to see a conference in the counties I live in, or all of Eastern Ontario where all of the  services could come and talk and listen to all of those affected by FASD. This to find out what they are doing right, and what they are doing wrong. Just understand when I say what they are doing wrong is not to assign blame or shame, but lets face it, FASD has not been a huge priority in our society and we are often forgotten. 

I would also love to see a conference where people and families affected by FASD from across Ontario come together and share their experiences good and bad and make relationships where we can organize as a single voice. This to get the provincial legislation and supports we all need to have our best lives possible. Then go big and have a conference where people and families effected by FASD from across Canada come together and share their experiences good and bad and make relationships where we can also organize as a single voice. This for federal legislation and support to have our best lives possible. Then I can see where all of us with disabilities should get together across Canada to demand better and more consistent policies to support us and our rights for the best lives possible. Just watch any government try to ignore that many voices unified by a single cause like disability rights. I have just turned 17 and  I know for dreams like this it will take time, and I am just starting to understand our political system.  Yet I can say just because I have a neurodevelopmental disability like FASD with all the other diagnosis I have does not mean I can not help make this happen. I will not limit my dreams because of a disability, a lot of the outside world likes to tell me what I can do and not do, but to hell with them; I say  to hell with them for all of us with disabilities. Just watch what any of us can do with a bit of peer support, some understanding, and giving us the education, support and resources we need to prove we all have our own superpowers and deserve the right to live our lives and dreams. This without being limited by what other people think we can do.

Thanks,

Shelby