The third and last question caregivers of individuals with Fetal Alcohol Spectrum Disorder were asked had to do with what would they ask if they were in the room full of FASD researchers, clinicians and professionals:
What is the biggest question I have?
- Are they ever going to do any kind of research to come up with medications specifically designed for these children? Maybe something that can even possibly repair damage in their brain?
Note: there are research trials underway for both medication Day 40 of 99 Days to FASDay: Psychotropic Medication Algorithm for FASD and nutritional supplements Day 39 of 99 Days to FASDay: Choline Shows Promise for FASD!
- How do I teach her to accept herself and love herself the way she is.
- When will it be known? When will it have the support, the funding, the places to go get testing as a child and adult? Places that support it, places that give you places that support it?
- How are we going to get the people that need to hear us, to listen to us to get support for our kiddos?
- Where to find professional services that understand the symptoms of FASD and why there are so few of them?
- How when we are much older, and there is no one after us, how do we make sure that she will be safe in this world, that she will be having a home and not end up on the street. How do we access services, and how do we access funds?
- How do we stop the stigma against birth moms? And how do we educate the professionals to really hear us and understand the disability? FASD is a medical diagnosis. It needs to be treated as such.
- Why is it so hard to get the people that are supposed to be supporting us, the families and our kids, to provide the supports we so desperately need, to raise these kids in safe, loving environments?
- How we can help him succeed in the school system if there are certain accommodations that will help or if we are just kind of going to be stuck with the constant back and forth of behaviours and meds?
- How can we prepare the world better to understand Fetal Alcohol and understand what these children go through on a daily basis?
- Does adulthood ever get easier? I don’t know that it does. I used to think when my boys were young, “Oh I can’t wait until they are older” and now I wish they were young.
- Why is FASD not recognized as a disability? Why do we as parents have to be advocates, case managers and parents? Why can’t we just be parents? Why can we not get services for children in schools and communities and why can we not get services for adults so they can live their best lives?
If you have 10 minutes, I would encourage you to watch the video. It is powerful. Share this blog post series, and share the video on social media from the FASD Caregiver Success page on Facebook.
Tomorrow we pass the halfway mark on our 99 Day Journey and look at the Birth of FASDay.