The Crees have entered into a new Memorandum of Understanding between the Grand Council of the Crees and SAF (Syndrome d’Alcoolisation Fœtal) France geared at sharing information and practices when it comes to preventing the brutal and life-lasting effects of Fetal Alcohol Spectrum Disorder (FASD). The MOU was signed on August 9 at the Annual General Assembly of the Crees in Waskaganish.
With any hope, this new deal may prevent a new generation of Crees from suffering needlessly from the after effects a child experiences from a mother consuming alcohol during her pregnancy, as this is what causes FASD. The disorder is mainly characterized by permanent brain damage among other issues.
According to Evike Goudreault, Head of Special Needs Services for the Cree Board of Health and Social Services of James Bay (CBHSSJD), the idea to put FASD back out into the Cree world as a topic for discussion and prevention came about because an old friend, Dr. Denis Lamblin, was coming to Canada from France. With Lamblin being the head of a major French organization that has done some very effective work in the field of FASD prevention, the opportunity arose for him to do some work with the Crees while reviving the Cree initiatives to stop a new generation from its needless suffering.
Having always wanted to see the Cree communities, Goudreault arranged for Lamblin to tour Eeyou Istchee to make presentations to both medical professionals and the general public this past spring.
“This sparked an interest to put this topic back on the table because of the shame and blame associated with drinking during pregnancy. It has often been something that has been shoved under the table and not really addressed.
“We need to bring this issue back into the forefront and start talking about it if we are going to do some real prevention as this situation isn’t getting any better,” said Goudreault.
According to Goudreault, the idea of signing an MOU at the AGA between SAF France and the Crees came about during Lamblin’s tour when he and Goudreault had the opportunity to dine with the head of the Grand Council, Grand Chief Matthew Coon Come. After hearing about Lamblin’s groundbreaking work with the peoples on the island of Reunion (just east of Madagascar) and how other nations have been signing similar agreements to put FASD back out into the forefront for discussion as a means of prevention, Coon Come invited Lamblin to the AGA to sign a MOU. Stepping up to the plate in the signing the agreement, the Crees of Eeyou Istchee have become “part of a world effort to address the international threat that FASD”, as stated in the MOU.
The MOU also outlines how the aim “at sharing and implementing strategies and programs, in both territories covered by the parties, to prevent prenatal exposure to drugs and alcohol, with a view to preventing FASD.”
Over at the CBHSSJD, Goudreault said that FASD would become a major priority in 2012 for the Special Needs Department as well as with the Special Needs Advisory Committee, which is comprised of individuals who work at the Cree Health Board, Cree School Board and at the Cree Regional Authority.
But what does making FASD a priority mean in real terms? According to Goudreault, this means not only having public events like the MOU signing and the community tours with Lamblin to create awareness as a means of prevention, but also focusing on the people who have it and what can be done for them.
Because there are both adults and children in the Cree nation who are living with the effects of FASD and other substances, it is important to get these individuals the proper services they need and the only way to do that is through diagnosis as it is the only way that interventions can be made.
“We are not saying that these kids are misbehaving, or that their parents don’t take care for them, or who don’t want to put any effort into their work, that is not the case. These are kids who have brain damage, but we are not seeing it. We assume that because they look normal they have to behave normally and they just can’t. They have difficulties and we have to recognize where those difficulties are coming from.
“We have to stop blaming the kids and stop blaming the families because these difficulties come from the brain damage,” said Goudreault.
In terms of the children with FASD, what is typical is that they appear to be more aggressive, defiant or resistant to staying on task or following rules and regulations in a given situation. This resistance however is not intentional since their brains do not function the same way as those who are not affected. They don’t think before they act, they just act and often it will be too late, Goudreault explained.
“They will have what is called an impaired corpus callosum (which is right in the centre of the brain). It has been shown in MRIs that corpus callosum is very thin and often non-functioning in cases of FAS and so they don’t have that ability or moment; sometimes it will be a fraction of a second when they have to think before they act.
“They will often make these mistakes, but to them it’s not a mistake because they just did what they wanted to do. Ask them why they did it and they can’t analyze it,” said Goudreault.
The problem is however that this kind of behaviour will often get an individual into a lot of trouble, frequently with a punishment to follow; only when someone with FASD gets punished they are being punished for having a disorder as they often won’t be able to control their own behaviour.
Other common problems resulting from FASD are impaired memories and difficulties when it comes to language skills. What is sometimes common is that these kids will talk a great deal while not being able to understand what is being said to them because they can’t analyze what is being said to them and relate it to themselves. Abstract thinking is another aspect that FASD children have a difficult time with as they tend to live in a very concrete world and so if they cannot see something, they often can’t understand it. This can create real problems for these children when it comes to learning subjects like mathematics or understanding basic living elements, like time and money.
The combination of all these difficulties in the context of a classroom creates the perfect storm when it comes to learning and so these children are often punished once again for having a disability as they are simply not able to succeed.
“And, because they look perfectly normal we expect them to behave that way and so we start judging them as kids who just don’t want to put in any effort and are therefore lazy and defiant. In most cases, this is not true,” said Goudreault.
Socially these kids are at a disadvantage as their disability makes them prone to being more defiant and difficult. These are the kids who are often bullied or will bully others because they try to fit in with the rest of the crowd and they will do anything to have a friend.
Goudreault describes these kids as being easily influenced and are often influenced when it comes to drugs and alcohol while never thinking about how not to get caught and so they will frequently end up in the justice system. There they are punished once again for their disability and not understanding their rights.
“When it comes to the girls, because they too will do anything to be accepted, they will often get pregnant at an early age and they will often take drugs and alcohol because of their frustrations and disappointments in life and because they are easily influenced. They will often drink during their pregnancy without understanding the consequences of that and then they end up giving birth to other children who are affected,” said Goudreault.
Having the proper services in place for those who have FASD can help these individuals beat the odds. Children with FASD can thrive more easily in an environment that is calmer and quieter, working one-on-one and where the information they need is repeated frequently. Providing this kind of learning environment for them as early as daycare can help ensure that they are getting the information they need to survive.
This is where ensuring that a child is diagnosed with FASD really comes into play because without the diagnosis the additional funding will not be provided to the child’s school or daycare to ensure that they get the extra assistance they need. With a diagnosis extra funding can be provided by the province to hire an extra individual to work with these children.
According to Goudreault there has been a lot of training done for the schools in the Cree communities though more needs to be done and more assessments need to be made because currently there are only two or three children recognized in the communities as having FASD when, statistically, the number is most likely several times that.
Services also need to be provided in the communities for adults with FASD as Goudreault said there are a number of Crees who are affected by this.
“Whenever I give presentations on FASD, there is always an adult who comes up to me and says, ‘Hey, that’s me you’re talking about and describing all of the characteristics I have’. Then they will tell me that their mother was a drinker and that they think they have FASD – so it’s not only the children. We will often think that children will outgrow it when they are 18 and that it miraculously disappears, but it follows them throughout their lifetime,” said Goudreault.
Many of the Crees with FASD have had to leave their communities to have their needs accommodated. An adult with FASD will often require someone to teach them the kinds of basic life skills they are prone to having difficulty with, such as how to handle their money. These individuals also need a great deal of support on a consistent basis because they don’t fit into that norm of learning from past mistakes. As a result, many of them end up in the justice system.
At the moment the CBHSSJD does not have a specific program geared towards individuals with FASD though it has recently completed negotiations for some supported living programs within the communities that could be helpful to these individuals. It is not specifically for those with FASD but for those suffering from mental health issues and those with FASD will often have other mental health issues that stem from having the disorder.
Goudreault said she is hopeful that more can be done for these individuals in the future.
“Just getting them to understand their own behaviour and why they do certain things would be beneficial to them. They may not need one-on-one work for this, but having some programs within the communities to provide work experience would be good as well as helping employees understand that these individuals have disabilities despite the fact that they look perfectly normal.
“There are quite a few things that we could do for these young adults because they have basically been on their own,” said Goudreault.