In 2019, FASD Advocate and Author Jeff Noble asked caregivers of individuals with Fetal Alcohol Spectrum Disorder to share their real life hopes and challenges. He compiled their answers to three questions in a 10 minute video, which he then showed at a conference filled with people who worked in the FASD field.
It was likely the first time many of the caregivers had the opportunity to publicly tell researchers, clinicians, social workers and other professionals about their experiences as a caregiver, without judgement. It was also very powerful and sometimes heartbreaking, to hear their concerns.
In addition to its debut at the conference, it has now been viewed on Facebook over 28,000 times. It needs to be viewed 10 -100 x more than that.
Over the next three days, we will highlight the answers to those questions.
What is the greatest challenge I face as an FASD Caregiver?
- How do we get people to understand that even though they look perfectly “normal” they’ve got brain issues … and that they are not bad children and that we are not bad parents?
- People’s basic no knowledge of what FASD is and what we go through and deal with and how to react to them, even professionals and teachers. They just don’t know what it is.
- Handling my own frustration that there are days that she can do things and there are days she can’t. And when she can’t I have to understand that it’s not that she won’t, even if she could yesterday, it’s that she can’t. I get frustrated and that doesn’t help anybody.
- School, my guy like many, many others are not getting the support they need to be successful.
- I want you guys to go look up on Instagram and hashtag Autism. You look up that hashtag and there are 11 million posts regarding Autism. Now do the same thing with FASD and you are going to be shocked. There are only 10,000 posts about FASD so the challenge is raising awareness.
- To keep my teen safe in social interactions with others and advocate for her with professionals who do not understand FASD symptoms.
- (My daughter)…is super, super smart, but she can’t do regular things. So to keep reminding ourselves that it’s can’t, not won’t. And that just because she’s super smart in some areas does not mean that just because she can’t do it in other areas that she’s dumb – which people call her all the time, which is unfortunate, but that she just has challenges and that we also need to be mindful of those challenges.
- …school support and behaviour.
- …not enough trained staff that can come into the house and give him the round-the-clock care that he needed, so now he is staying in a unit and not at home.
- …finding day programming that supports my gal, keeps her safe and helps her to find a circle of friends that don’t take advantage of her.
- …having others understand him. Feeling judged out in public, dealing with behaviours that others just don’t understand.
- Finding FASD-informed professionals. People want to treat her as if she’s neurotypical because she presents well. Or they see ADHD. Or they see Attachment. But most do not understand or know about FASD.
Come back tomorrow, as caregivers share their greatest hopes for their children.