Translating the world for a person with fetal alcohol
BEING A “COGNITIVE” TRANSLATOR.
Written by Jodee Kulp
Jodee has been a tireless advocate for persons with FASD since 1997, and she continues to pioneer new ways of quality of life improvement. She is the behind-the-scenes engine of Red Shoes Rock and developer of the Expanding Mindz with Canines program to encourage executive functioning growth. She is also the co-producer of Embraced Film (www.embracedmovement.org)
In an abstract world, a brain that thinks concretely may need help with interpretation, and by having a cognitive translator our daughter can avoid mistakes and frustration in professional meetings in finance, social welfare, medical, and the judicial process. When needed she enlists me as her cognitive translator and I attend the appointment or meetings to make sure the communication between the professional and my daughter is understood. Over time both the professionals and individuals gain communication understanding in working as a team.
To translate I make myself “an only when a necessary piece of her conversations”. I may bring a magazine or book to glance through to appear busy or I may catch up on a text message. I make sure to give her the space she needs to manage herself and remain in charge. If she gives me a preset signal, I interject into the conversation for clarification. After the end of the meeting, I ask for a recap of the next steps or meeting. Cognitive translations provide her safety to remain on course and navigate through complicated professional discussions, keep her trust in the professional and increase her skills and knowledge. It also opens the eyes of the professionals to understand how what is said or written can cause huge repercussions.
“You need to keep your blood sugars low” can be interpreted two ways A1c which is a 90-day average or glucose test-by-glucose test. What is low? What does low mean? Does it always need to be low? What about if her body is different from the international average? What if those average numbers are actually dangerous for her? You see one statement can become difficult.
“You need to not lose any more blood.” Do we stop drawing labs?
When she trusts and feels safe she is able to manage more complex situations. With time and experience, she manages her life challenges.
While some professionals consider my attendance a hindrance to her progress I wonder how clearly they understand the brain and metabolic system of a person with fetal alcohol.
- In a therapy session for anger management, a therapist described the range of emotions: “Emotions are like waves, there will be low times and high times and if you wait through a low time you can ride the wave up to a high time. Then you will ride the wave back down. Like this.” (Therapist demonstrated with her hand a waving motion.) I remained silent, watching my daughter process what she heard. When we arrived in the car, I said, “Your therapist had a good idea today about managing anger, tell me about it.” She replied, “I don’t get it, why would she want me to ride in a wagon?”
Why did this miscommunication occur?
First, we live in Minnesota so she has no experiential frame of reference for a large wave. (Professionals must think about what experience this person has that I can connect new learning to) Second, she took “wa” sound and assumed her auditory processing issues had confused her once again. “You can not ride a wave on a Minnesota lake. If you ride on it, could it be a “wagon?”
How many times “What we say” is not “What is received?
- At a job placement meeting, a counselor stated, “I am a realist, do you think senior citizens would like your hair?” “I am a realist, do you think senior citizens would like your clothes?” (And she continued with more questions beginning with “I am a realist”) When we reached the car, my daughter turned to me and said “Why would a Realtor care how I look for grandmas and grandpas. They like me just how I am.” I was glad she had missed the professional’s point.
- One adult I have translated for begins nodding her head when she “does not” understand. This provides two results – “The person explaining believes understanding has occurred and stops talking.” Another polite adult states, “Thank you so much for telling me that, now I understand.” Only later in the safety of her home do you realize the words understood were hot air.
As a cognitive translator, I do not consider myself an external brain any more than I would consider a seeing-eye dog an external brain for a person who cannot see. I am simply a tool, another set of eyes, ears, and mouth when needed. I become the list maker, the care coordinator, the text message, and the dot connector for individuals and professionals.
When another person I care about was asked in a meeting to provide a two-year timeline of events for judicial. I problem-solve the abstract into concrete finding solutions like notes on recipe cards you can sort into time, phone, and social media texts. Soon, a two-year time frame was created.
The people I love have beautiful brains – they think very differently from mine and all are very capable in so many ways better often than those of us functioning abstractly. In a world that has moved from agricultural to industrial to informational and now to communication, we have left this population behind. She is a strong, dynamic adult with valuable insight into a world that often seems to talk too fast and too much.
Injured with facial stitches and unable to talk well due to an injury, the nurse continued to come into her hospital room pull down her mask and take a deep breath (yes, during Covid). She then proceeded to drop a pill on the floor and put it back into the med cup. Sam, her husband, became her cognitive translator and advocate stopping the situation and requiring new medication. The statement back from the nurse, “Oh, I thought you were retarded.” Enough said.
Cognitive translation empowers versus de-powers.
In a world that is so often dismissive, the professionals often have the wrong thought process, my daughter is a greater person because of her challenges not lesser.
Please share your experiences in missing communication, perhaps together we can start and finish better conversations.