Sorry I haven't Written In A While But My Mental Health Has Been Crap

 Sorry I haven't written in a while, writing a single post can take me days to weeks before I get my words right, communication is a major part of my disability, and I have been trying to work on myself. I have been exhausted for months trying to live with FASD in a world that does not understand what that is, and that has taken a terrible toll on my confidence and self-worth.  I have quite a few things started for my blog, lots of ideas, and lots of editing to do but I often feel so bad about myself being misunderstood that I just can't write, I feel worthless and it is like no one cares.

So often when I say I have FASD I get asked what is that, as those people have never heard of FASD. Or worse have heard of FASD and think that they know what FASD is but really don't understand the complexity of this disability. This leaves me trying to explain for the thousandth time what FASD is, how it affects me, how others with FASD will not be like me, and that we are all affected differently and that this is a spectrum and whole body disorder.

I have watched my parents over the years trying to explain what FASD is, and what needs to be done to support my brother and me only to have people not listen or be told we don't meet some mandate of service because they don't help people with FASD. Now that I am older at 15 it is becoming more and more my job to speak up for myself, I am my best advocate. Yet all the advocacy in the world does not mean anything if the people I am talking to don't understand FASD. I am so tired of having an invisible disability that people tell me I do not have because they do not know what FASD is nor understand it.

Every year that goes by I find my life becomes a little more difficult, bigger decisions, not fitting in, being judged for a disability people do not understand because there is so little awareness. I long for the days when I was a little kid and no one cared I had a bit of trouble, and no one knew I had FASD including me. Then there were my friends, no one cared if I had problems, I was just Shelby and we were all good friends. 

Yet as time passes I find I become judged more and more, I see that with the other disabilities as well. I have seen so many people with disabilities leave school, move schools, stay online for their classes or quit school because they can not stand being judged. I find high school to be a brutal environment to have difficulties, but let's face it high school is a tough place at any time. It's horrible as we all try to figure out who we are as we approach adulthood but add a disability, any disability, and you are the odd person in the mix and an easy target to be misunderstood, picked on, and left behind.

Yet it is not just high school that is difficult, it is so much more than that, it is relationships, dating, social media, social services, employment and trying to fit into a society that has little patience for someone who is a little different, especially when that difference is an invisible disability. I go to my family doctor and need help with something FASD specific but usually, I can not get help, I need to get a letter of support from an FASD professional that yes I do need help with whatever I am requesting, then my doctor's requests are refused time and time again. I can go to a psychiatrist asking for help, but do they understand FASD, they know of it but the understanding is not that good. At least the psychiatrist worked in a hospital with my FASD Key Worker, but they would insist I retry the same old meds I tried before and did not work. Leaving me upset and angry that I would say I did not want to try that med I had already taken it and made me more upset each time I tried. Finally, I give in, accept my brain chemistry may be different this time, take the meds ask for mental health support with the meds and they do not know where to send me. Seriously can someone give me the strength to put up with this shit, this lack of FASD awareness, and what to do to seek help?

 Mental health is a huge challenge for me, I will not hide it is a huge problem for me, mental health is a challenge for most of us with FASD. Yet as I age and observe myself and others I am convinced most of those challenges with mental health are created for us by a society that does not understand what FASD is and how to support those of us affected by it. Imagine what it is like to live your life day in and day out misunderstood for an invisible disability that makes you different. Yes, I have FASD but it does not make me a freak, it means I need a few accommodations in life to succeed. FASD means I have a completely preventable disability because my birth mother drank while pregnant with me and later my brother. Yet from the little bit, I know about my birth mother, birth father and birth family I suspect if they had proper support or mental health supports my life may be way different today. I really do not think my birth mother drank because she wanted to hurt me or my brother and give us FASD. Odds are she had no idea what FASD was or that drinking during pregnancy could be harmful to her unborn child, leaving my brother and me with a lifelong disability. Odds are my birth mother drank while pregnant because she could not cope, needed help did not get it and did the best she could while self-medicating with alcohol and drugs trying to get through her days. 

Scary isn't it, I think about being, nine, ten, eleven, twelve, fifteen and seeking help and not getting it, soon I will be an adult on my own seeking help and the big question is will I get it? Will I do any better in my life than my birth mother, will I repeat the cycle of drugs, alcohol and addictions and pass onto my child a lifelong disability, like FASD? At least I have awareness about FASD, that I can not drink alcohol while pregnant and have a child. The problem I see in my adult life will be that my mental health will get in the way of well-thought-out decisions. I see now where my mental health makes me feel so horrible about myself that I make horrible decisions. My parents, friends, and online friends tell me I am making mistakes, and that I will regret my decisions later but till my decisions blow up and I really regret what I did I won't listen to anyone because my mental health gets in the way of good choices. The part that really stinks is when I have to go to my parents or friends and say you were right, you warned me that my choices were not going to work out well for me.

Getting FASD-informed therapies has cost my parents a pile of money, I know they have managed to get help with some of the costs but they have paid for most of the services themselves over the years. Finally, I said to my parents I want to use public mental health services because that is all I will be able to access later in my life. That and I saw what my parents were doing without at home paying for the FASD informed private services for my brother and me so that we would get the best help possible. So that left me finally going to my local children's mental health, even though my parents had been warned by the family doctor and Family and Children's Services that my problems were way beyond the capabilities of our local agency. So a 6-month wait or more for services from children's mental health and I am assigned to a person without a clue about FASD. At least she has the courage to say she does not understand FASD and seeks help from my FASD Key Worker. The question is how good things are going at children's mental health because I really am not doing any better but I am learning to speak up for myself and demand support. I have a big mouth which can be a problem, yet in a society, with so little FASD awareness a big mouth is a really important skill. I hope I can hold it together long enough that I can go to college or university and get a job helping children and families get the support in life they need. Big ambition for a 15-year-old but I have known for a long time I want to help others live the best lives they can. Paying back to those who helped me along the way to get to where I am today because I know my life could be so much worse than it is. 

So to end this I want to give a special thanks to my parents, my FASD support group (Rural FASD) and all the FASD advocates who are bringing help and awareness to those of us affected by FASD. Yet it should not be up to my parents or FASD advocates to have to speak up for those of us affected by FASD and our families. There needs to be a provincial and federal strategy or mandate that makes sure everyone with  FASD gets the help they need. Yet help and FASD mandates will only come with awareness, so let's all start to speak up to everyone possible.  We have nothing to be ashamed about wanting the best life we can have.

Shelby




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