Why do we at FASCETS feel so passionate about the work we do? Is it worth all the effort? What is at the heart of this work?
With a RESOUNDING YES, we believe it is all worth it when we get to witness the transformation of lives, when we get to see health and healing happen, where despair is changed to hope, where darkness is turned to light, or at least light at the end of the tunnel that makes it worth the journey, where “survival mode” is changed to celebration and embracing those around us with FA/NB. And through the work of FASCETS we get to experience this, witness this, and be a part of this time and time again. Here are some personal stories that share the power of our work.
Shifting From Anxiety To Acceptance
“My daughter had been having a really difficult day. I was able to see she knew her body couldn’t take the sensory overload of a cold ice cream shock. Rather than fighting her on being picky about what treat she ate, I was relieved that she knew her body’s needs. (Thanks to new knowledge from the workshop!) She asked for the cocoa in a bottle. She’s four years old, but I knew the sucking would be soothing. Then she asked me to hold her. That was my final reassurance that this was about meeting her totally legitimate needs. I rubbed her back with deep pressure while she drank it. And she’s soothed. I’m so delighted she knew what her body needed, she asked me for what she needed, and I met those needs. Thank you so much for giving me the reassurance to do these things for her. It’s so healing for all of us. My mental angst about if I’m being indulgent is gone. I really can’t thank you enough for your perceptive and compassionate training.”
— Stefanie, parent and workshop participant
From Darkness to Illumination
Although we knew from a young age that our daughter was behind her peers in many ways, and that the FASD was the reason behind this, we still clung to this fantasy that with enough love and understanding she would catch up sufficiently in her lagging cognitive skills to fit in with her peers. My belief was that if we, as her parents, continued to provide her enough unconditional love, attention, and patience, she would get there. Her childhood (and then subsequently, her adulthood) could be “normal.”
We were missing information that would lead us to believe anything different.
I did not grasp that the things she needed from me were completely different than what my “neurotypical” son needed, I tried harder and harder, doing the same things repeatedly, with relatively little success. As my concern for our daughter grew, my confidence in what we could do about it was quickly diminishing, because it seemed nothing worked.
I wish I could say to every parent of a child with FASD who is feeling hopeless, feeling like they might be surrounded by darkness, you and your sweet child (or children) can live a life that has many more ups than downs, one that contains an enormous amount of joy. Yes, thinking brain first is an approach that sometimes entails a steep learning curve, but it can take you and your family to wonderful places you might never have imagined possible.
As Maya Angelou so eloquently suggested, “When you know better, you do better.” We didn’t know, back then, how to parent our daughter differently, but we do now. And we can do better because of it. Equipped with this knowledge, we can look forward with hope and confidence, knowing that whatever the future brings— we’ve got this.
— Eileen Devine, LCSW works as a therapist and consultant with families impacted by FASD and other neurobehavioral conditions through her private practice at eileendevine.com.
My Son and I Now Have A Relationship
I did not know my son had a brain-based condition until he was 18 years old. I knew he had difficulty remembering things, keeping track of keys/hats/gloves/books, getting consistent grades, making friends, and managing his emotions. However, it was not until I was hired to work in the field of FASD, professionally, that I slowly began to identify my son as a person with FASD. Identification of his FASD left me confused around what to do about it. Everything my professional training had taught me about managing behaviours and promoting success had never worked. It was not until I learned the FASCETS Neurobehavioral Model that everything began to change.
I quickly learned who my son was, what was easy for him and what was hard for him. I learned what his brain could do well and what his brain needed support with. I learned many things about who my son was… I learned that processing language when tired was very hard… I learned making decisions while otherwise engaged was really challenging… I learned he was extremely sensitive to sensory information especially touch… I learned he worked so hard looking “normal” in the community, that he was absolutely exhausted by the time he would return home. There was so much to learn about him I realized I had not really known him before. I also learned that I was going to have to change.
I started to accommodate… I stopped talking to him at the beginning and the end of the day, to reduce the need to process language unnecessarily. I recognized this alone caused 60% of our conflicts. And the biggest miracle happened… I saw that if I stopped talking, first the fighting stopped — stress was reduced for both of us immediately and I also saw that he would come to me to talk… when he was ready and when he could best process the language. Never again did I need to know if he was ok… I learned he will tell me first, every time, if he is not! That alone was life changing. I learned to offer him choices of the things he likes best instead of asking him to make decisions… it immediately reduced his reactivity to my question and reduced fighting. I learned to ask for hugs so he would be well aware of any touch ahead of time. These are just a few examples.
Over time, the accommodations supported my son to better understand himself and what he needs to be successful. As a result, he has worked full time in social services for eight years and was just promoted. However, most importantly to me, the Neurobehavioral Model supported my son and I to develop a relationship. During the first 18 years, we did not have true reciprocal relationship… we had a brittle pattern of fighting. Now my son checks in with me… asks how I am doing… prioritizes Mother’s Day… admits when he is wrong. Now we have a relationship. FASCETS and the Neurobehavioral Model gave me my son back… it truly changed our lives!
— Parent and Professional, Canada
It Helped Me Navigate the Impact Of Strokes and Dementia
I attended my first FASCETS workshop to help me in my professional work as an FASD Coordinator and Facilitator. Little did I know the information and tools I received would prove to be so useful in my personal life.
When my father had a severe stroke, the year after my initial training, I quickly noticed how the brain-based approach so well described what he and the rest of our family was experiencing – he was a different man, and we didn’t understand the new him, we didn’t appreciate how his brain had been impacted by the stroke. The information from the Neurobehavioral Model helped me make sense of who he now was, helped me grieve and accept the new reality, and in turn, helped me support the rest of the family in making sense his new set of abilities. It made it much easier for all of us to not react to his different behaviours, but instead see them as language for how frustrated he was in his new body. This gave us the space to consider his needs and provide support instead of getting stuck in a place of reactivity.
Now, with a mother who is living with dementia, it also helps me reframe her changing behaviours as her cognitive functions slowly but surely declines. I have a framework to help me take a deep breath, to understand and anticipate what might become an issue for her, and prevent dicey situations. Does it mean I don’t get frustrated? That I don’t grieve who my mother used to be? That I am perfect with her all the time? Definitely not. But it does mean that I am able to catch myself, to notice my own emotions, and to make changes to her environment based on her needs, and this, with much more clarity.
The Neurobehavioral Model has given me an appreciation for how different we all are and for the impact judgment and assumptions have on our connections with each other. It has provided me with a framework and tools to help me remain curious and to consider different cognitive abilities regardless of the source of our differences. I am a much more empathetic, accepting and supportive person for it.
– Daughter and Professional, Canada
This Material and Process Are So Empowering
I cannot begin to tell you how much I got out of the FASCETS training. I enjoyed it while it was going on, but now that I am using the screening tool and the accommodations grid with clients’ families, I am recognizing even more how incredibly valuable it was. There are families that up until now, I have only been able to help by being empathetic and validating their experiences. Now, we are coming up with genuine accommodations for their children that coincide with parents’ deeper understanding of what their children are experiencing, and the disparity between their own expectations and what their children can actually do. This material and process is so empowering to me as a clinician and to them as parents. So thank you, thank you, thank you!
– Leslie S. Leff, M.Ed, MSS, LICSW, Child/Family Psychotherapist, Northampton, MA