I am a psychotherapist who works with people who have Fetal Alcohol Spectrum Disorder. I have had different opportunities to share my perspectives on FASD through training and facilitating events, but this is my first opportunity to write about my own journey and share some of the things I have learned through the dozens of individuals I have met who live with FASD. I think I need to start this blog post with the “how” and “why” of how I became aware of and passionate about this unique population.
When I began working in human services, many years ago, I was wildly ignorant about FASD. And, since many of my jobs have been around child protection, I now know that I met and worked with numerous children who were prenatally exposed to drugs and alcohol. I just did not understand what I was seeing when I worked with children who had behaviours I only understood as “bad”:
…. The little boy who bolted to the edge of a balcony on the 5th floor and tried to climb over the edge.;
…. The teen who opened my car window on the highway when I was driving and leaned halfway out to wave at the helicopter in the sky;
…. The boy who talked and talked and talked…about anything and everything until my ears felt like they would burst.
Just over 10 years ago I had the opportunity to learn a great deal more about FASD. Now, in the spirit of full disclosure, I did not go looking for this knowledge. In fact, I was fully steeped in FASD stigma and when a practicum for my Masters degree included working with an FASD Key Worker in BC, my inner dialogue sounded something like “I don’t want to work with people with FASD! They lie and can’t understand consequences.” (Please keep reading…I recognize how terribly offensive that opinion is. I promise I have learned how wrong I was; but I remember that initial viewpoint whenever I am working with anyone who is uninformed about FASD. I had very humble beginnings.)
My practicum project began with properly researching FASD. And then it involved meeting some families who were supporting children with FASD. Between those two experiences, and the deep encounter with the realities of FASD my life trajectory changed.
You see, once I started reading about FASD and how prenatal alcohol exposure affects the brain and body of an infant, I began to understand how the children I had met weren’t “bad” at all. Instead, before they were born and had any choice in the matter, these children were exposed to a substance that damaged them permanently. I began to understand that the behaviour I saw was a result of them making sense of the world from their own unique perspective. I began to realize that if I remained impatient and judgemental, I was just joining with the rest of society and continuing to do harm with negative labels. I learned the importance of taking the time to understand and appreciate the value of the individuals I was meeting.
When I had the opportunity to meet some of these individuals and their families my journey really changed. You see, with some basic understanding of what FASD was about, I was suddenly able to look past the behaviour I previously saw as bad and really see the children who had that FASD label. And I saw beautiful things. I saw boundless enthusiasm. I saw energy. I saw a desire to please, to be liked, to play, to be funny. I met caregivers who had reached depths of love and patience unlike anyone I had met. I met people who struggled and advocated and relied on humour and passion to get through days and nights of challenges. I met people who were far more creative about simple, every day routine than I have ever needed to be.
And I fell in love. Let me explain. You know how gold is refined? By fire. I was seeing gold. Parents, caregivers and children who were walking through fire every day: judgemental glances by people in grocery stores; frustrated teachers; extended family members who thought they knew better; friends who no longer called; birthday parties they weren’t invited to; and typical childhood events they couldn’t manage. Yet, when I approached them with curiosity and empathy and humour, I saw children and adults light up and shine- Like gold! And I came to love working with this community. Today I’m grateful beyond words for that blessing of a practicum that I never wanted to do.
With this blog I hope to share some of the lessons I have learned and continue to learn while working with clients and families who live with FASD as part of their lives. I want this blog to have practical, useful information and I hope to hear from the real experts who have far more expertise than I do – those with FASD as a lived experience. Until next time…
Tanya
Great to read of your journey, Tanya. Warm regards, Jane
You were there at the beginning of the journey, Jane!
This is a must read article for people who are living with, or working with this segment of the population. Thank you for sharing your experience and shining a light on FASD. For to long everything I’ve read stated the kids were bad. They aren’t.
Thank you so .. much ! I have NEVER read anything like this , from someone that doesn’t have FASD ! You get “IT” .
It’s not offensive in the least to want to resist . “ We” are a bit “much “?
It takes a special person to not only try to understand , but be willing to guide us in this journey called life . I have yet to find anyone in Alaska that has any experience with adults with FASD.
The struggle is REAL .. a hidden disability is the worst kind , in my opinion . Here is my blog .. if you’d like to read my journey
https://plus.google.com/106446604376486415208
Thanks so much for the feedback, Gina. I just looked at your blog…keep it up! The world needs to hear your voice.
Tanya, your story is awesome! Life can be so wonderful if we’re not afraid to look around the corners!! It’s a struggle to find professional people who truly “get it”. Flying with Broken Wings is both an encouragement and a reminder of what the future could look like if we don’t continue to do everything we can to support affected children and adults!
Thank you
Connie
Yes yes YES! And thank you thank you thank you! As a parent and a mental health professional I applaud you and look for to more posts!
That a an amazing read. My name is Flora Paintedstone am 42 soon to 43 and I live with FASD and sad to say I am unlike most people I grew up without no support network. I get through my days alone drawing strength and loves from my fur babies.
Fur babies are incredible supports. I hope you find more humans who can understand. Fur babies have discerning hearts…you must be amazing to be loved by them!
Thank you for spreading awareness with a positive edge, so tired of the doom & gloom associated with FASD’s?. Namaste
Thank you and shared to Red Shoes Rock
Thank-you so much for sharing! You and your daughter were some of my first heroes on my journey. What an honour to be noticed!
As parent to an FASD child, this has moved me to tears. The description you give and what you know that we families need is so true. Thanks Tanya.
Thanks for this in-depth explanation. Keep up the good work, Tanya.
As a retired Paediatrician and mother of a child with FASD its so refreshing/reassuring to read this Tanya. I only wish I had started to recognise these children earlier in my career so as to have influenced paediatrics and mental health services more in Britain….we have a lot of catching up to do. Thank you Helen
I am sitting at my therapist and psychiatrist’s office at Jersey City-NJ hospital right now! Just had a session and spoke of how the world would change for me if she was knowledgeable about FASD!
I am 39! And need the service!!
If any one in my area, please let me know!! Regards
I’m born with fasd, and this article made me feel at ease.
I read your article on a morning where I was feeling pretty low. It is nice to know that sometimes our children but I’ve recognized as shining stars. Thank you for who you are and for all that you do.