My husband and I spent four hours at an FASD support group yesterday. About three of those hours were spent slowly taking turns around the room, hearing and discussing each other’s stories. Learning about the children each person loved and how prenatal alcohol exposure to alcohol has affected them. It was a positive environment, skillfully led, with input from some experts who were also there, experts who have also raised kids with FASD. It was a room full of hope and determination.
I was nervous before we went. I developed a new appreciation for the courage of those who attend AA and other support groups. It is not easy to come forward and to say you or your family need help, that you can’t do it alone, that you need support. I have always failed those trust tests where you are supposed to fall back and let others catch you. I didn’t know what to expect. I didn’t want to hear more bad news.
What I heard, as we went around that room, slowly and respectfully sharing our experiences, was that we are not alone. There are others out there, who know and who understand. But it was more than that. I know the statistics. We are connected with many really helpful support networks in cyberspace. Social media is a gift. It has helped us immensely to be in touch with families, experts, adults with FASD. But there in that peaceful room we were able to look into each others’ eyes, to see the pain, the fear, the rugged determination, the will to fight shining through the frustration and tears. It was humbling but uplifting.
And yes, as I had dreaded, it was also a room that held some of my worst nightmares – those things you fear for your child when you lay awake, trying to suppress the panic. The vulnerability of our kids laid bare. Prison. Sexual violence. Isolation. Ostracism. Self harm. Rejection. And yet, there it was – the mind-blowing and inspiring resilience of people whose loved ones have suffered through those worst things of all. They were saying, “We’re still here, we’re still fighting, and look! Our kids are not only progressing, they are doing well.” You can come through even great darkness to the other side. I never thought to face down those fears.
There were three birth mums in the room. Their power and their presence smoothed the anger I realized I had been harboring toward our son’s birth mother. It’s a whole other level of bravery to stare down the stigma, to put your child’s wellbeing ahead of your own defensiveness and fight like hell for your kids.
There was an intergenerational nature to the meeting that was refreshing. There were parents and relatives of young people ranging from toddlers to the late 20s. We were recognizing our own experiences in others with kids of similar ages. We were learning from those with older kids and maybe even helping those with younger children. We learned more about legal structures that can help. We heard of best practices for educating professionals. We discussed ways to interact with schools to create more positive learning environments. We saw self-less volunteerism in action. We heard about endless hours some have spent trying to widen the services available to families affected by FASD. It was a lot to take in. Honestly, I felt exhausted when I left. I just needed it to sink in. I wasn’t sure what it all meant.
But then, this. This morning I told our son that we met many families yesterday who had children with FASD. He said, still trying to comprehend our various, gentle conversations about this over months, “Do I have FASD?” I said, “Yes, you do. And yesterday we heard about some amazing things that kids with FASD have done when they have grown up. And we heard more about other kids with FASD, kids who get frustrated, kids who forget things. You are not alone. But you know what? As you grow up, you’ll figure things out. You’ll learn how to manage things so you don’t always feel like this. We’ll help you.” And as I said it, I realized I had more confidence in these words, words that I have said before. He will absorb that confidence as together we walk on into his tomorrows.
Finding support [This has been updated June 2018):
The meeting we attended was organized by NOFAS UK. They can be contacted via a helpline at +44 02084585951 (Wednesdays) or via email@example.com. The FASD UK Alliance is an informal coalition of groups across the UK.
There are similar groups in a wide range of countries – when in doubt, Google!
There are various ways to stay in touch via social media. On Facebook, there are closed groups that are very supportive places to seek answers and to find support. The FASD UK Facebook page is a great place to start. Or another Facebook group, FASD (a) Flying With Broken Wings is a great international group. Another favourite is Shifting the Paradigm: Towards a Neuro-behavioral Approach to FASD.
There are other groups for other countries, which can be easily found by searching on Facebook. On Twitter, there are many informative posts every day with the hashtag #FASD. (We are on twitter as @SB_FASD and @MB_FASD).
Reach out. FASD is complicated on many levels. Information is power. Perspective comes from learning and networking. We try to include links throughout this blog. Please see our resources page for some places to start.