Author Archives: edmontonfetalalcoholnetwork

Be Safe and Secure: FASD Medic Alert Bracelet Info Session and Sign Up

Screen Shot 2017-10-21 at 2.55.06 PMIn partnership with the EPS Indigenous Community Liaison Committee (ICLC), Bissell Centre is proud to host the FASD Medical Alert Bracelet information and sign up session.

Edmonton is the second city in Canada to introduce the bracelet for individuals impacted by FASD.

MONDAY, OCTOBER 23, 2017

2PM TO 4PM

FIRST FLOOR BOARDROOM BISSEL CENTRE

10527-96 ST NW EDMONTON, AB T5H 2H6

For more information call or email: Trish Ellison-Traverse, RSW FASD Community Educator 780-966-0039 pellisontraverse@bissellcentre.org

Alberta Family Wellness Initiative: Resilience

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RESILIENCE

Why do some of us bounce back from adversity better than others?

TIPPING THE BALANCE TOWARD GOOD HEALTH

To promote a good standard of health and help prevent mental health and addiction problems in our communities, we need to support all individuals in building the foundations of resilience—the skills and abilities that develop through experience and allow us to adapt and stay healthy even in circumstances of severe stress or hardship.

The resilience scale is a metaphor to explain why some people seem more resilient than others and to help visualize how to improve resilience: the ability to respond positively in the face of adversity.

LOADING THE SCALE

Think of a scale where a person’s good and bad experiences get stacked over the course of development. The positive experiences that get stacked on one end are called protective factors and include things like attentive caregivers and available social supports that provide things like good prenatal health, nutrition, health care, and a childhood rich in Serve and Return interactions. The other end of the scale gets loaded up with bad experiences—what scientists call risk factors. These are experiences that cause Toxic Stress and tip the scale in a negative direction. Toxic stress occurs when no caring adults are present to buffer the effects of experiences such as abuse, neglect, or parental addiction. RSA-1

 

A person’s resilience scale is a good predictor of health outcomes, and what gets placed on the scale in early childhood is especially important. When the scale, weighed down by positive experiences, tips in a positive direction, a person is more likely to experience good health, academic success, strong relationships, and economic security. A person with a scale weighed down by experiences that cause toxic stress will have increased risk for stress-related diseases, including diabetes, heart disease, anxiety, depression, and addiction. Many of these outcomes surface in adolescence or adulthood, long after the resilience scale was loaded by experiences in early childhood.

SETTING THE FULCRUM

Most of us know of people who seem to thrive in spite of difficult childhoods, or those who struggle in life even though good caregivers and strong communities loaded their scales with predominantly positive experiences.

Experiences alone are only half of the story; genes also play a role. A person’s genetic inheritance is like the starting position of the fulcrum, or the balance point, of the scale: some of us are born highly sensitive to the effects of toxic stress, while others can withstand significant amounts of stress without experiencing lasting harm to brain architecture. On the scale, we see that the position of the fulcrum affects how much leverage positive or negative experiences have in shaping our life outcomes.

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HOW DO WE BUILD RESILIENCE?

Research into epigenetics has revealed that, remarkably, the position of the fulcrum is not set in stone. Experiences at critical stages of development modify how our genes are expressed. Over time, supportive relationships and serve-and-return experiences can shift the fulcrum in a more resilient direction, strengthening brain architecture so that a person is better prepared to bounce back from significant life stresses.

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Because life events aren’t always in our control, it’s important to help all children build the foundations of resilience so that they can better meet the challenges they may face during development and later in life. For older children, adolescents, and adults, it is never too late to build resilience; though the required effort increases with age, we can always improve skills that enable better outcomes.

For more information please visit the Alberta Family Wellness Initiative at: http://www.albertafamilywellness.org/what-we-know/resilience-scale

this is how Aboriginal Women have been tackling the effects of drinking during pregnancy

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Two decades ago a group of Aboriginal women from Rockhampton in Central Queensland realised the harm that drinking during pregnancy was having on the next generation.

But despite years spent tipping in their own money to support Aboriginal people affected by Foetal Alcohol Spectrum Disorder (FASD) in daily life, education and employment, as well as undertaking FASD training, they have been continually knocked back for funding.

“I worked in drug and alcohol for eight or nine years, and picked up a lot of things working with the young ones, and going to Woorabinda and working in different areas like Biloela and Emerald,” Aunty Priscilla Illes told BuzzFeed News.

“There were (noticeably different facial) features, but there were a lot of things about these young ones, and even the older ones, that didn’t seem right.”

It took a trip to New Mexico for a First Nations healing conference for her to learn there was a name for the condition — Foetal Alcohol Spectrum Disorder — and that First Nations communities overseas were ahead of Australia in not only identifying and dealing with the issue.

FASD is a permanent brain injury that is caused when an expectant mother drinks during pregnancy and the alcohol is passed in the bloodstream to the developing foetus.

Aunty Priscilla and elders Aunty Elaine Williams, Aunty Judy Tatow and Aunty Carol Willie were the forefront of educating the Central Queensland Aboriginal community on the dangers of drinking during pregnancy.

“We applied for funding and we couldn’t get it,” Aunty Priscilla said. “We were knocking on doors but no-one was answering.”

The elders were among 200 people who attended an FASD symposium in Rockhampton last week. It was aimed at raising awareness and knowledge about FASD in the region, as well as improving the capacity of community and service providers to tackle FASD.

Children with FASD experience learning difficulties, problems with memory and attention span, cause-and-effect reasoning and impulsivity, as well as speech and other disabilities. It leaves them vulnerable to the justice system and can lead to barriers in education and employment.

A study conducted earlier this year found that one-in-three youth in Western Australia’s Banksia Hills juvenile detention centre have FASD.

While 10% of those affected develop facial characteristics that help diagnosis, for the remaining 90% a diagnosis can only be determined through identifying these behaviours.

There are no current statistics on how common FASD is. A Parliamentary inquiry in 2012 found that prevalence is expected to be high, with over 60 percent of Australian mothers consuming alcohol while pregnant.

“It is the leading preventable cause of developmental disability in the Western world,” Dr Heidi Webster, a Sunshine Coast-based developmental and behavioural physician, said.

“More children are born each year with FASD in the world than autism, spina bifida, cerebral palsy, down syndrome and deaths from sudden infant death syndrome combined.”

She says that while medical services, government and researchers are spending money and time on addressing these issues, there is little focus on FASD.

Andrew Evetts, principal of Wadja Wadja High School at Woorabinda, an Aboriginal community west of Rockhampton, says he sees the effects of FASD every day in the community. He estimates about 80% of his students may be affected by FASD. It was a problem he saw seven years ago when he taught at the primary school.

“(They have) no boundaries, they just do dangerous things,” Evetts told BuzzFeed News. “They’ll climb the roofs, and … they won’t climb down, they’ll jump down. There’s no fear. They’ll react angrily, have outbursts, and that’s where you really have got to have patience, you know it’s not the child, it’s the condition.

“You have to remember teachers aren’t trained in FASD. So that’s our biggest barrier to start with. A, Identifying it. And B, having the teachers to be able to support that child in the classroom.”

For too long, the support has not been there.

Dr. Janet Hammill, a Gomeroi woman and an FASD researcher, says the bulk of funding has “been wasted on reinventing the wheel and not reaching the ground”.

“I am most concerned about the future of our children and in particular ‘my kids’, who were exposed to alcohol before birth,” Hammill told BuzzFeed News. “Some of them are now becoming grandparents, some are in prison and there are suicides as well.

“Failure to act on the urgency of their situation can be blamed on the lack of political will, as well as our own Indigenous representatives.”

Hammill has tried to raise the issue of FASD at numerous conferences and says that the shocking rates of FASD in Aboriginal communities have been “downplayed”, even by Aboriginal organisations.

Hammill says she is battling misconceptions that to identify the issue is to “blame mothers”.

“It began with attempts to shoot the messenger, until finally the truth had to be accepted. There were attempts to blame women and Indigenous people, instead of locating the blame solely in foetal programming [the multi-generational impact of FASD] caused by over 200 years of devastating … actions of the newcomers to this country.”

Hammill says it’s now time for the resources to be directed to “support the strengths and capacity of dedicated workers in the field.

“That is why I was overjoyed to connect again with Murri women, who have hung in there after 18 years of being trained in FASD and not losing hope. If only now policy makers will recognise the substantial hub of knowledge and commitment that is evident with the Aunties, and across so many of our communities where these hubs exist.”

If you need to talk to someone, you can call Lifeline Australia on 13 11 14 or Beyond Blue Australia on 1300 22 4636; Anxiety UK on 08444 775 774; or Hopeline America on 1-800-784-2433.

Retrieved from:  https://www.buzzfeed.com/amymcquire/meet-the-aboriginal-women-who-want-australia-to-take-fetal?utm_term=.ddz7G8YmX#.lnznJv0ao

How alcohol drinking in pregnancy increase baby’s addiction risk

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New research suggests the reason fetal exposure to alcohol increases the risk of drug addiction later in life may be related to endocannibinoids, cannabis-like chemicals that the brain itself produces.

“The end result is that the dopamine neurons in the brain become more sensitive…”

“By understanding the role endocannibinoids play in increasing the brain’s susceptibility to addiction, we can start developing drug therapies or other interventions to combat that effect and, perhaps, other negative consequences of prenatal alcohol exposure,” says senior research scientist Roh-Yu Shen of the University at Buffalo.

His work focuses on how prenatal alcohol exposure alters the reward system in the brain and how this change continues through adulthood.

Prenatal alcohol exposure is the leading preventable cause of birth defects and neurodevelopmental abnormalities in the United States.

Fetal Alcohol Spectrum Disorders (FASD) cause cognitive and behavioral problems.

In addition to increased vulnerability of alcohol and other substance use disorders, FASD can lead to other mental health issues including Attention Deficit Hyperactivity Disorder (ADHD), depression, anxiety, and problems with impulse control.

“After the prenatal brain is exposed to alcohol, the endocannibinoids have a different effect on certain dopamine neurons which are involved in addicted behaviors than when brain is not exposed to alcohol,” Shen says.

“The end result is that the dopamine neurons in the brain become more sensitive to a drug of abuse’s effect. So, later in life, a person needs much less drug use to become addicted,” Shen explains.

Specifically, in the ventral tegmental area (VTA) of the brain, endocannibinoids play a significant role in weakening the excitatory synapses onto dopamine neurons. The VTA is the part of the brain implicated in addiction, attention, and reward processes.

In a brain prenatally exposed to alcohol, however, the effect of the endocannabinoids is reduced due to a decreased function of endocannabinoid receptors.

As a result, the excitatory synapses lose the ability to be weakened and continue to strengthen, which Shen believes is a critical brain mechanism for increased addiction risk.

Shen’s research appears in the latest issue of the Journal of Neuroscience.

A research grant from the National Institute on Alcohol Abuse and Alcoholism (NIAAA) of the National Institutes of Health (NIH) supported this research.

Retrieved from:  https://knowridge.com/2017/10/how-alcohol-drinking-in-pregnancy-increase-babys-addiction-risk/

#Support Adoption: What that’s meant for this family

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Written by: Martin Butcher adoptee, and adoptive father of a child with FAS

This week is National Adoption Week 2017 with the hashtag #SupportAdoption. It’s one of the biggest adoption awareness raising initiatives in the UK. So yes, the over-riding aim is to find families for some of the most vulnerable children in the UK. But there’s also a hope that those whose lives and hearts have been touched by adoption will share their individual stories to #SupportAdoption.

Maybe you’d like to hear mine.

#SupportAdoption

Sixteen years ago, I received a phone call out of the blue. I was sitting at my kitchen table with a group of friends, chatting and laughing over coffee and cake. The kids were all at school. I’d adopted the little girl I’d been fostering nearly a year before and made it clear to Social Services that that was us done. With three kids, our family was complete. But this was urgent, they said. They wouldn’t be calling if they weren’t desperate, they said. It will only be for six weeks, they said.

I went back to the table and told my friends. They all thought it was so exciting. The idea of a newborn baby coming to us the next day straight from hospital… You can do it, they said. We’ll support you, they said. We’ll be there for you, they said.

Sixteen years on and that tiny baby is our beloved son. He never moved on. He’s our challenging yet wonderful son with FASD and a learning disability who’s never going to live independently. And those friends are still in our world, still supporting the best they can. Not in hugely practical ways, but just by sticking with us. They have my back. They believe in me. They stand by me even when they can’t understand. They’ve never lost faith in me, even when I’ve lost faith in myself. They let me talk when I want to talk and stop asking questions when I don’t. They have supported our adoptions, in ways that most other people we’ve encountered have not.

#SupportAdoption

Most ‘normal’ people with ‘normal’ families don’t understand adoption. They don’t understand how you can love someone else’s child as much as your own birth children. They don’t understand when you say it’s different (because how can it not be different when you grew your birth children inside you for nine months and gave birth to them and breast fed them?) but it’s equal in intensity. They ask how ‘your own children’ are coping with these other children in their world, as if these other children are not your own. They describe your adoptive children’s birth mother as their real mother or natural mother, as if you are in some way fake or unnatural (I choose to go with ‘supernatural mother’!).

The kids hear all this too. They know they are different. They’re treated differently. They’re not invited to the parties. They’re looked at with suspicion. They get asked if their mum dumped them in a dustbin. They’re told they weren’t wanted and that their birth families were ‘skanky’.

As an adoptive parent, you have to be thick-skinned and strong for your kids: a veritable love warrior. You have to fight to keep their self-esteem and sense of identity intact. You have to support adoption, be an advocate for adoption. You have to tell your kids a different story to the story the world is telling them – in a louder, more confident voice that drowns out all the negative voices.

#SupportAdoption

We all go through life believing that the help and support will be there when we really need it. Like the panic button you’re given to hold when you’re in that MRI machine, which you can push if you need help. Which my husband pushed and no one came. He shouted and no one came (he ended up throwing his wedding ring across the room because he was panicked it might interfere with the MRI scan).

One afternoon when my daughter was in Year 10, we got a phone call from school saying that she was telling everyone that she was going to meet her birth family after school. They thought we should know. That’s as far as the support from school went. This revelation rocked our world. We had no idea how to react. We turned to Adoption Services for help. We pushed the panic button. No one helped. They told us to look online for advice, to order a book form Amazon. We shouted louder for help. No one came. No one helped. It appeared this wasn’t a big issue for anyone but ourselves. These services are so stretched that only the emergency cases get a chance of receiving help. We didn’t count as important enough.

We got this from school too – ‘She’s not on our radar.’ And psychological services – ‘She presents as a delightful child’. No one had the resources to help us or the understanding to see what was going on.

And then it was too late.

#SupportAdoption

The support you receive when you adopt may not come from the places you expect. It can be a lonely journey – isolating, terrifying, undermining. You have to create your own support structure – a local support group, a Facebook group, a close friendship with another adopter – places where you can be heard and understood and supported.

Adopters need to know that they are not alone. Adopters need to support each other.

We are the experts on adoption. We’re living it. We are the only ones who can ever really understand. We have been there before.

I choose every single day to #SupportAdoption.

For this is my family. This is my life. This is my reality.

I have the most incredible children in my life.

They’re the most forgiving, resilient, determined, funny, generous kids I know.

And I have the privilege to call them mine.

Retrieved from:  http://www.huffingtonpost.co.uk/helen-redfern1/supportadoption_b_18255524.html?utm_hp_ref=uk

Enjoying Halloween With Sensory Challenges

With Halloween fast approaching you may have to think about how you and your family can enjoy the spooky day with sensory challenges in the mix. Take a peek at a few tips!

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Click to download tip sheet: Enjoying Halloween with sensory challenges (1)

The invisibility of people with developmental disabilities

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With the recent federal commitment to increase mental health funding across Canada, we need to turn our attention to people with developmental disabilities – individuals who are currently invisible within Canada’s mental health system. This group has some of the greatest needs for mental health services and supports, yet is rarely acknowledged or targeted in mental health efforts.

Those with developmental disabilities, which includes Down syndrome, fetal alcohol syndrome and autism, are rarely recognized in mental health statistics, policy priorities, education and training or even clinical practice.

There was a time when this population was not “seen” within mainstream mental health initiatives, because they received their care in a separate system, primarily through institutional care. But with the closure of institutions and an emphasis on community inclusion in Canada over the last several decades, those with developmental disabilities are expected, like everyone else, to access physical and mental health care in their home communities.

Unfortunately, their health needs are often not adequately addressed. And our inability to see this population is costing the health system enormously.

Perhaps because of the complexity of their health needs (physical and mental), this group is more likely to have repeat emergency department visits and to be re-hospitalized than other individuals, a sign that the connection between community and hospital-based care for those with developmental disabilities is not what it should be. And the Ontario Ombudsman released in August 2016, “Nowhere to Turn,” a disturbing report based on a four-year investigation into the care and treatment of adults with developmental disabilities, which found that this population was also very likely to experienced homelessness, incarceration, abuse and neglect. As well, it reported, the families of these adults were often subject themselves to burnout.

Moreover, recent research from the Centre for Addiction and Mental Health and Institute for Clinical Evaluative Sciences in Toronto shows that 45 percent of Ontario adults with developmental disabilities are diagnosed with a psychiatric disorder and at least 6 percent have an addiction.

A national study of hospitalizations, published in the Canadian Journal of Psychiatry, found that almost half of developmental disability hospital admissions were psychiatric hospitalizations. And, the majority of those were youth and young adults. This is in stark contrast to people without developmental disabilities, among whom hospitalization for psychiatric disorders tended to be later in life.

Sadly the members of this this population, complex and vulnerable as they are, are frequently treated by mental health and general health providers who are not familiar with their disabilities and do not feel comfortable working with them. Indeed, training for health care providers on the mental health needs of this group is very limited in Canada.

So, what needs to be done to help policy-makers finally see this invisible population, so they can better support the mental health system to address its needs?

As a start, our mental health promotion must include adults with developmental disabilities, since we know they are prone to mental illness and addictions.

We should invest in screening for mental health issues and early intervention in this population, and we should be taking active measures to help those with developmental disabilities get accurate diagnoses and receive accessible evidence-informed treatments and supports. This means that all mental health care providers should receive the basic skills and knowledge required to support people with developmental disabilities.

In order to reduce or avoid repeated emergency visits and lengthy hospitalizations, we need to invest in more outpatient-based mental health care. Mental health and social service sectors across the country must work together with each individual in this population who is hospitalized, to ensure they are safely discharged and receive the mental health support they need.

Finally, we should always keep in mind the phrase “nothing about us without us.” If there is to be a good, patient oriented solution, people with developmental disabilities and their families need to be at the table, alongside the other mental health or addiction groups with expertise. It makes good policy and good economic sense to ensure individuals with developmental disabilities are included in mental health plans, strategies and funding.

It’s time the needs of those with developmental disabilities and their families are seen and met.

Retrieved from:  http://policyoptions.irpp.org/magazines/april-2017/the-invisibility-of-people-with-developmental-disabilities/

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