FASD program helps community better understand disorder
For the last 10 years, the NorWest Community Health Centre has been running a fetal alcohol spectrum disorder (FASD) program out of the Thunder Bay site.
The Health Canada website states that FASD is an “umbrella term used to describe the range of disabilities and diagnoses that result from drinking alcohol during pregnancy.”
The website also states that “it is estimated that in Canada, more than 3,000 babies a year are born with FASD, and about 300,000 people are currently living with it.”
Maureen Parkes, the NorWest Community Health Centre’s FASD coordinator, has been involved in the initiative since its inception.
“The reason we exist is because there was a need in the community,” Parkes said. Parkes explained that there was a request from people inthe community for expanding services to address FASD.
Parkes said that the NorWest Community Health Centre provides the only monthly diagnostic clinic in northwestern Ontario. The FASD program now includes an eight-week caregiver program - which was created to help the families and caregivers of those affected by FASD.
Parkes said that the eight-week program teaches participants about FASD, and “puts the disease in perspective. It’s a very challenging and misunderstood disability.”
“We provide medical and clinical care for individuals who have FASD,” Parkes said.
Parkes said that FASD is a “brain based disability.”
“One can only end up with FASD if they’ve been prenatally exposed to alcohol in utero,” Parkes explained. “Individuals who have been exposed may not necessarily have FASD, but they may be at risk.”
Parkes said that the centre sees clients across the age spectrum, from newborns to older adults. “The oldest adult we actually diagnosed is 55 years-old,” she said.
Parkes explained that FASD “looks different on everyone.”
“More commonly, what we see are individuals who may have problems with thinking,” she said. “Sometimes they might not be thinking of the right thing at the right times.”
Parkes explained that clients talk about poor decision making, that they are easily overwhelmed, suffer from memory deficits and trouble communicating or understanding words properly, and have struggles with the education system and the criminal justice system.
“Mental health issues are quite common with clients who have a FASD diagnoses,” Parkes said. She said depression and anxiety are issues commonly seen in people with FASD.
Parkes said that the only way a person can get FASD is through being exposed to alcohol while in utero. “You can’t get it any other way,” she said.
“You’ll hear it (FASD) is 100 per cent preventable,” Parkes said. “In theory, it is. Of course it is. If women didn’t drink during pregnancy it is totally preventable. The concerning thing about that is you have to take into account why women are consuming alcohol in the first place.”
Parkes explained that it is not as simple as telling a woman who is using alcohol while pregnant “OK you are pregnant, you need to stop.”
“We see a number of women who are dealing with, or affected by addiction. Addictions are extremely powerful,” Parkes said.
She explained that often women need support to stop drinking.
“If they’re not getting the support before they’re pregnant, or while they’re pregnant, then it is likely they’re not going to stop. In that respect it (FASD) is not 100 per cent preventable.”
“The other thing we often see is women who did not know they were pregnant,” Parkes added. “So its not uncommon for women to consume alcohol in the early stages of pregnancy.”
She explained that during the earlier stages of pregnancy, vital organs are being developed and that the baby vulnerable throughout the entire nine months of pregnancy. “The brain in particular is very vulnerable to alcohol.”
Parkes said that there is no safe time to drink alcohol during pregnancy, and no safe amount to drink.
“As I understand it, alcohol is the most serious substance a woman can use when pregnant because cells (are) extremely sensitive to alcohol,” Parkes said.
Though the Health Canada website states that “research suggests the occurrence of FASD is significantly greater in Aboriginal populations,” Parkes said that FASD does not belong to just one specific population or culture.
“There are still no national statistics or national data that shows one population is more at risk,” she said. “Anybody can have a child with FASD.”
Parkes also said that the centre has seen clients who have disclosed that they did not drink wine, beer, or liquor, but instead drank “homebrew” during their pregnancy.
“Homebrew” is an alcoholic drink commonly made in places where alcohol is prohibited and often unavailable. The proof of each batch of “homebrew” is not known. Parkes explained that babies of women who drank “homebrew” while pregnant are also being diagnosed with FASD.
“There are a lot of factors that go into diagnosis,” she said. “We have to figure out what the neurological issues are.” Parkes said that it is hard to determine with children under three years of age if they have FASD, unless they have the facial features of those severely affected by FASD.
“If we know kids have been exposed to alcohol in utero, we will keep them in the program and follow them,” Parkes said. Parkes said that referrals for clients in the northern communities is starting to increase.
“We are getting several referrals to the diagnostic program, which is great. Initially we are doing a video conference with the families.” Parkes said. She explained that the centre then works with the families to get them to Thunder Bay “in the least disruptive way possible.”
The NorWest Community Health Centre is hosting a two-day event starting Sept.12 on FASD. Brenda M. Knight, a registered psychologist who provides mental health services to individuals and families living with FASD, will be present at the events.
“The Sept. 12 event is for professionals in the community who might be working with individuals who have FASD, it’s to try to keep FASD on the radar and to help teach them the most affective ways to support someone with an FASD,” Parkes said.
“The last day is for caregivers to talk about their stories,” Parkes added. “It is specifically for them to sit down with Brenda and talk about their experiences.”
Registration information can be found at norwestchc.org.
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