Imagine having to memorize all 1,638 intersections in Williams Lake because your brain doesn’t automatically comprehend how an intersection works.
Or the frustration you would feel if the bread and milk had been moved at the grocery store and you didn’t realize they would have to be somewhere else in the store.
Those are two real life struggles of local people who live with Fetal Alcohol Spectrum Disorder, that FASD key worker Shel Myers shared with the Tribune in a recent interview about his work at the Cariboo Chilcotin Child Development Centre (CDC).
Last week city council agreed to proclaim Friday, Sept. 9, as Fetal Alcohol Spectrum Disorder Awareness Day in Williams Lake, after receiving a request from Myers and co-worker FASD parent and support worker Ruth Shaw.
The CDC works with FASD families of children from birth to 18 years of age.
Myers has been involved the last four years and said he loves the challenge and enjoys meeting new families.
“There is always new research going on in Canada,” he said. “Our country is one of the world leaders when it comes to researching FASD.”
When asked to describe what it is like for someone with FASD, Myers gave two examples.
Picture the brain as a filing cabinet, he suggested.
“Whenever you want to access a key piece of information, you access the appropriate cabinet and you pull out the right folder.”
For someone with FASD challenges, imagine taking that filing cabinet, dumping everything and scattering it on the table and trying to find what you are looking for.
Another analogy that Shaw uses, Myers said, is to take a regular gum ball machine that is full of gum balls.
“The challenge is how many times you are going to have to pull on the knob before you get a blue gum ball. You might get it the first try, you might get it on the 50th try. That is sort of what it is like trying to access the processes that you want with an FASD brain.”
The first attempt is probably not going to get the results or information that is needed.
Because FASD is a spectrum it can go all the way from having no noticeable affect at all and there are probably thousands of people in Canada who go undiagnosed and are coping fine.
Then there is the other end of the spectrum with heart, skeletal or brain deformities, hearing, seeing and taste problems.
“Those people are virtually helpless to function in modern society and need an external brain — somebody with a normal functioning brain to help them get through society.”
At the CDC there is a parent support group that meets regularly in the form of an evening meeting or a luncheon.
It is an opportunity to vent or just socialize, Myers said.
“Parents can step out and be normal for an hour and a half. They are awesome people these parents.”
When they share stories with each other it helps, because as one of the parents said, ‘you cannot make these things up.’”
In his job, Myers tries to help families and caregivers locate appropriate services, books, articles and direct them to the group’s Facebook page — Speaking FASD.
Persons with FASD are super skilled in one area because the part of the brain that did not get damaged in utero becomes hyper developed, Myers said.
He has met people with amazing musical, mechanical or chess abilities.
One boy who was great with lego has gone on to work in Vancouver where he builds architectural models for companies.
There is still anything close to a cure, but some interesting research is being done with stem cells so there is hope, Myers said.
But despite the research, he added, there is no federal support for people.
“They get a diagnosis, but that’s it.”
Myers recommended the following videos for further information on FASD.
https://www.youtube.com/watch?v=K0VrkLQfkFg
https://www.youtube.com/watch?v=LafUmARkPpg
https://www.youtube.com/watch?v=2mC3mX7EwCI
https://www.youtube.com/watch?v=2cXIDjEakDs
https://www.youtube.com/watch?v=6QgZKkv_Pck
