Stemming from a resolution signed by the Grand Chief at the 2012 Annual General Assembly of the Crees as a commitment to work on the issue of Fetal Alcohol Spectrum Disorder (FASD) in Eeyou Istchee, six months later the issue got its own forum.
Congregating at the Delta Hotel in downtown Montreal for three days in the middle of January, delegates representing three Cree entities – the Cree Board of Health and Social Services of James Bay (CBHSSJB), the Cree School Board (CSB) and the Cree Regional Authority (CRA) – and various Cree communities assembled to work on the issue.
According to Evike Goudreault, Head of Special Needs at the CBHSSJB in Chisasbi, giving the issue its own forum instead of lumping it in with the other disorders that fall under Special Needs in the Cree Nation has been a much-needed thing because the issue is so taboo.
“We look at the issue of children having behaviour problems and having learning difficulties, but we don’t address the core cause,” explained Goudreault.
However, that has changed as finally in 2013 there is a new determination within the people of Eeyou Istchee to not only identify the problem, but to look at ways of preventing FASD while also providing services for those who have been affected by it.
“I learned a lot because there were people here with FAS. We heard their testimonials and what it is like to live life with FAS. It was very touching and really emotional,” said Judy Nakogee, who attended the event on behalf of the CRA.
During the forum, the participants received training on how to help those with FASD and how to recognize its signs, as well as develop action plans for both the short and long terms at a community level.
“The forum was good, but what we really need right now is prevention. FASD is completely preventable, so we need to prevent it and then support these kids suffering from it,” said Paul Linton of the CBHSSJB.
“Education is what needs to happen. We have to go to the youth because they are the ones who are going to drive this. Ten years from now, they will be the ones who are going to be in school, experimenting with all of these different things. We need to start this education at a young age. We often see youth as young as 13 engaging in everything from sex, drinking, smoking and drugs,” said Linton.
According to Goudreault, who helped organize the forum, one of the best things to emerge from the event was a new willingness to address the issue by all of the entities present, particularly as there is more evidence of FASD.
More children with learning disabilities have appeared on the radar as graduation rates within Eeyou Istchee have plummeted over the years and the CRA has become aware of just how at risk these youth are.
As awareness about the issue has increased throughout the communities, those who have been affected by FASD are more comfortable speaking about it publicly. For the first time ever at this kind of event, Crees spoke about what it’s like to go through life with FASD while their families/caregivers discussed the impact it has had on their lives. For the first time in a public setting, a mother spoke openly about how her child came to suffer from FASD.
“I think other mothers are going to come forward and say that they also drank during pregnancy, while not knowing they were pregnant at the time or not knowing the dangers of alcohol. They too will admit that they drank and caused their child to have some brain damage,” said Goudreault.
This situation may be more prevalent than many think, as FASD was never discussed within the communities until the early 2000s and still later when evidence of this problem began to become clear.
“Now that they are seeing more and more of it, they can put themselves in the shoes of the people who were speaking. They know people like that whether it is themselves, their cousins or nieces or nephews,” said Goudreault.
“It is in their families. They have witnessed something in the communities and can now identify with it. They can say, maybe this is what is going on with my child or my neighbour’s child or those other young adults.”
According to Goudreault, various plans of action were put forward, particularly as the need for diagnosis and a plan to get individuals diagnosed was worked on. In order for those affected by FASD to get the kinds of services they need, a multidisciplinary diagnostic team has to be formed and they are hoping that this can be done in partnership with the Montreal Children’s Hospital.
Ideally, this team would include people from various entities. So far the Special Needs department has been working with Dr. Kent Saylor of the Children’s who has done some diagnosing in this field previously. There’s also the need to engage a person to coordinate all of the services between the families and the service providers as the diagnosis would take several days and several meetings. The team would also need an occupational therapist, a speech therapist and a neuro-psychologist or a psychologist at the least to do some of the assessments.
The plan for this diagnostic team would be to start with children and then later focus on adults.
While children with FASD will receive help to get them through school and improve their lives in the long term, young adults who have already gone through school and are suffering with the issue will get their own focus.
“We would like to get them the support they need so that they can understand their disabilities, look at what their strengths are and how we can support them. Whether it is a bush program for example, that is something we can offer them or upgrading their education because now knowing their disabilities, perhaps with enough support they can go back to school,” explained Goudreault.
“Or perhaps they need support with a financial situation when it comes to managing their budgets or getting housing. It is a holistic approach that is needed because it will not just be one service that they will need to help support them. These are young adults who have a lot of difficulties in their lives so it is a matter of finding ways in which they can be better supported.”
This plan however is part of the longer-term solution, in the immediate future the focus will be on prevention as much as possible.
With that in mind, looking at strategies to deal with such a delicate subject matter is also something that needs to be handled carefully.
“Our plan is to address sexuality at a young age. Because the mothers of these kids are young, we now need to address this while they are young, before they start having sexual relationships and before they even consider having children. They need to have this information and so we would be doing this at the school level,” said Goudreault.