Day 58 of 99 Days to FASDay continues with voices of people with FASD.
Stephen, whose poem is featured above, was diagnosed with Fetal Alcohol Effects at age 43. This poem was found on FASLINK, (of which Stephen is a very active and valued member). FASLINK is a Fetal Alcohol Syndrome listserve linking individuals, families and professionals who deal with FAS.
Below is a another poem published on FASLINK.
Me, is who I am
Fighting to see who I am,
getting up each day knowing I’m not me,
but someone I’ve learned to hate,
someone my Mother made me.
I have the power to change,
but don’t know how,
someone has taken away the plans for me,
has diluted, has put in, and taken out,
they forgot the antidote, thrown it away,
made me something I’m not.
But somewhere, and somehow, someone saw me,
cared for me, loved me, and maybe, I’m still me, just different.
Because someone loves me still.
~ Jennifer Woodward
In 2017, NOFAS-UK announced the creation of an National FASD Advisory Council.(NFAC). This is great news for those in the United Kingdom – but I’m sure those of us in other parts of the world will also benefit from hearing more voices of people with FASD. From the NOFAS-UK Facebook page:
NFAC is comprised of adults with Foetal Alcohol Spectrum Disorders (FASD) who will advise and help guide the new NOFAS-UK Transitions to Adulthood Project. The committee will be chaired by Lee Harvey-Heath. Other committee members include Nyrene Cox, Andy Jackson, and Claire McFadden.
Lee Harvey-Heath said, “It is vital that those affected by FASD have a voice. Individuals with FASD need to be heard in order to gain the support that they so desperately need and deserve. My own undiagnosed FASD took me to a place that many neurotypical adults don’t come back from. That is what I want to prevent happening to anyone else affected by prenatal exposure to alcohol.”
Nyrene Cox said, “We want to make sure there is enough support so the younger children that have FASD don’t go down the wrong path – whether it be drugs, alcohol, or sexual exploitation. I love my children but maybe I might not have had a child at 17 if I had more support.”
Andy Jackson said, “It’s important to advise and support others with the struggles of living with FASD, to transition from ‘kidulthood to adulthood’ and also to share our life experiences. There are ways to help children have positive experiences, for example through sports programmes.”
Claire McFadden said, “I’ve been really lucky that I have been supported well, having been diagnosed at birth and raised by my biological mum. But I still struggle with friendships and I struggled at school. My teachers didn’t understand me and it’s hard to keep a job.”
All four committee members emphasised the frustration of living with a ‘hidden disability.’ Harvey-Heath said, “We are affected daily, but to the outside world we look ‘normal.’ This was hardest in that transition period after leaving school.”
If you would like to share your voice, the National Organization on Fetal Alcohol Syndrome NOFAS is once again (2018) holding a contest. This year, it’s all about Video Campaigns!
You’re invited! Calling all members of the FASD community! Submit your own original video on FASD prevention or awareness, and NOFAS will feature it in September for FASD Awareness Month! You are welcome to send as many videos as you wish, in any format or style.
Keep in mind that NOFAS is particularly interested in two types of videos:
You are invited to submit a video PSA to NOFAS! You have the opportunity to create a PSA-style video, about 2-5 minutes. The goal is to raise awareness about the risks associated with prenatal alcohol exposure and to prevent the occurrence of FASD. Be creative! NOFAS will select a winner for the best PSA. The winner’s video will be featured prominently on social media and the NOFAS Weekly Roundup email newsletter, and shown at NOFAS events and trainings. All other videos submitted will be shared by NOFAS as well.
NOFAS is asking people to send short videos (15-60 seconds) with a brief FASD awareness message. This can be as short as a few seconds or as long as a couple minutes. It can be as simple as recording yourself speaking to the camera for a few seconds about the importance of FASD awareness, or sharing your personal experience. NOFAS will post these videos on our social media channels every day throughout September
If you know of any other opportunities to use your voice, let us know!