FASD: A Tale Told in 9 Ts

September has been a busy month as advocates, individuals, caregivers, organizations and professionals came together to raise the profile of fetal alcohol spectrum disorder. We all know that advocacy and awareness will not stop as the month ends, but a special month does provide increased exposure. I participate in a variety of activities year round, but one way I raise awareness is through wearing t-shirts. I thought it would be fun to look at the story of FASD through those Ts.

My first FASD T was this one created by Woods Homes. It contains a description of FASD (on the reverse) from Myles Himmelreich, a motivational speaker, self-advocate, mentor, and researcher. This t-shirt reminds me of the FASD community and all the people who are working to make change. In particular all the self-advocates. I have met a few in person, and many online. In this photo I was excited to wear the shirt when I and my daughter met R.J. Formanek for the first time. RJ is the inspiration for Red Shoes Rock, a self advocate, speaker, educator and mentor. I also met Jeff Noble that day. I felt like I was meeting FASD Rock Stars!

The next FASD shirt I have in my collection was a gift from a fellow FASD mom and advocate. One day a package arrived with a t-shirt, keychain and bracelet for my daughter and I. It was from His Momma FASD who wanted to thank us for the awareness and advocacy we were doing. I was touched. And honoured. Not only was the gift a surprise, I had a surprise encounter while wearing it one day. I had taken the dog to a trail for a walk. On the way home, I saw our local MP was participating in a Pancake Breakfast. My daughter and I decided to stop by. The MP passed our pancakes to me through the window, gave the dog a treat and asked about my shirt. I forgot I had it on and so was able to have a quick conversation and make FASD visible that day for a politician.

The third t-shirt I own was one I purchased from a caregiver support group I use to attend (before COVID) on occasion. It isn’t close, but there isn’t one close to me, so I tend to float around, not really fitting in. They are all located a minimum 45 minutes away. Like services and supports for FASD, they are few and far between. This group is fairly well established so has some great programs. Support groups are important. They provide a community who understand our path, help when we need it and provide support, services and advocacy. For those of us who have lost family and friends over the years because of misunderstanding about FASD, support groups are the life line we need to keep us from total isolation.

My next t-shirt is a well worn one. It was a gift to myself – not only because I bought it, but it arrived on my birthday! I absolutely love this one, made and sold by Jeff and Tara (Soucie) Noble. It is no nonsense. Many people don’t know what FASD is. This one tells you. Since its purchase, it should be noted CanFASD has suggested a new common definition. But this one is a classic.

This long sleeved t-shirt was one of the first designs my daughter and I made when we opened up our Redbubble Shop. The message isn’t visible in this photo, but it states: I love someone with FASD. There are 24 pink hearts with one red one, representing that in Canada there are 1 in 25 people with FASD. Just like the message isn’t visible in this photo, sometimes FASD isn’t as obvious or visible to people.

This t-shirt showcases one of the logos from the Red Shoes Rock team. Red shoes have become the symbol associated with FASD awareness. Each year the Red Shoes Rock team, thanks to the creativity of Jodee Kulp, comes up with a theme and a logo. This one is about HOPE. Help Open People’s Eyes. Despite 50 years since Fetal Alcohol Syndrome was named as a diagnosis we are still a hidden disability. But wearing unique shirts and red shoes are noticeable and get people engaged and talking.

On September 9, FASDay, I went out sporting our newest t-shirt design – FASD Advocate. This has been my role for the last 16 years. I wanted to be a parent. I didn’t realize I was going to have to be an advocate. Most parents and caregivers are advocates because we have to – we advocate for services, supports and understanding for our loved ones. Some of us are out in the community raising awareness in more general terms. As an introvert it is really difficult for me to put myself out there. To have my voice heard. Even posting all these photos of myself wasn’t easy to do. But I am proud of the advocacy work I have done. It goes in waves. Sometimes I have more time or energy than others. Sometimes I work with others and am part of groups, other times I’m alone. Sometimes it’s in person, sometimes online. Sometimes I speak in front of an audience and sometimes my t-shirt speaks for me. But advocacy remains part of my world.

The most recent addition to my FASD t-shirt wardrobe is this cool design from wrestler Jeremy Elliot, who wears red wrestling boots in the ring. This year he launched his Embrace Our Journey Campaign. He has a godson with FASD. This is such a fun design! My daughter and I wore ours out the day we received them, and had someone stop us and ask about them. That is why I wear t-shirts and red shoes. They really do start conversations.

The 9th t-shirt in my collection that is the last to be featured is this orange one. Why last? Because today, September 30, the last day of FASD Month, is Orange Shirt Day in Canada. It is also National Truth and Reconciliation Day. It is a simple shirt that states FASD and spells it out. I have it in orange to honour my daughter, who is Indigenous. There are ties between the two worlds. Two of the Calls to Action in the Truth and Reconciliation Report are about FASD. You can read more about that here: FASD, Truth and Reconciliation

Finally, not a t-shirt, but interesting addendum and correlation to how these fit in the FASD story – even though they don’t fit me. I was so excited to try a new product … some cool red shoe leggings! I thought they would add variety to my wardrobe. They would be visible where a t-shirt under a coat wouldn’t be … but alas the largest size (which isn’t even large) is too small for me. So they will not be worn by me. I was so disappointed! But it goes to show that the world we live in is not made for people who don’t fit a certain type. I will not let that stop me though. I still have other pieces to raise awareness with. I’m not going to force myself to fit in them either. I will find another manufacturer who understands we are not all the same, but we still fit and belong. We all have gifts to offer in this world. We all belong.

As September comes to an end, I want to thank everyone who has supported me over the years. I want to give a shout out to everyone raising awareness, supporting individuals and caregivers and just trying to get by day by day. This can be a lonely journey at times, but I love to see the awareness and momentum. Change is happening. Each year there are more and more creative and unique projects! Keep rockin those reds!

4 thoughts on “FASD: A Tale Told in 9 Ts

  1. Ab says:

    I love the stories behind each of your 9Ts and how they illustrate the path you and your daughter have taken together. And those shorts are so cool too! Thanks for all of your tireless advocacy and community building.

    Liked by 1 person

    • Ethel de la Penotiere says:

      We all know that advocacy and awareness will not stop as the month ends, because our kiddos are so important, but a special month does provide increased exposure and gives me satisfaction that 09/09 is fully immersed in FASD. When will FASD get to the stage that reconciliation had for the month of 09/22. I see Indigenes are still hurting as nonindigents don’t feel the pain of reconciliation, but 09/09 gave me one day to share how proud I was to share how I understand my granddaughter’s FASD. When it takes a village to raise an her, we are still alone. The government said 09/09 is the one day we can talk about FASD in Queens Park. WHY? ALL PEOPLES have the freedom to live life to the fullest. Communities need to get it.
      Ethel

      Liked by 2 people

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