Network Meeting December 5, 2017 Agenda

soil-media-strategy

Please joined us at our December 5, 2017 EDMONTON FETAL ALCOHOL NETWORK MEETINGS

Date: Tuesday December 5, 2017

Location: Catholic Social Services – 10320 146 Street

Supports and Services Meeting: 8:30 – 9:30 am, AGENDA

  1. Call to order
  2. Approval last meeting minutes
  3. Reporting
  4. Finances
  5. Short-Term Crisis Intervention Worker
  6. Additions
  7. Review Core Documents
  8. Program Updates

 EFAN Society Meeting: 9:30 – 11:30 am, AGENDA

  1. Call to order
  2. Approval last meeting minutes
  3. Finances
  4. New Research
  5. Council, Interagency, Committee Updates
  6. Additions
  7. Parade and FASD Day Working Groups 2018
  8. Program Updates

Click to download agenda:  EFAN Agenda December 2017

 

Parenting a child with Fetal Alcohol Spectrum Disorder

Mother teaching her little child

Fetal Alcohol Spectrum Disorder (FASD) will be in the spotlight again this week when international expert Jeff Noble gives insight and hope to New Zealand parents, caregivers and professionals dealing with fetal alcohol and its effects daily.

Jeff is the founder and CEO of Noble Initiatives based in Canada and is focused on helping to create more good days than bad for those parenting and working with people with FASD.

He’s running two sold out workshops in Auckland (November 25th) and Christchurch (November 27th) covering the fundamentals of the disorder and providing attendees with ideas to make positive changes in the way they understand, interpret, and live/work with individuals affected by FASD.

New Zealand organisation FASD-CAN is bringing Jeff to New Zealand with the support and funding of the Ministry of Health.

Claire Gyde, Chairperson for FASD-CAN, says the organisation in a not-for-profit charity set up five years ago to unite caregivers, strengthen families and educate communities about FASD.

She says that parents and caregivers usually make their way to FASD-CAN after receiving a diagnosis for their child.

“By the time they come to us they are already battle weary. They have been through the wringer and they are exhausted and overwhelmed by the information they’ve been given and the reality of life long effects of fetal alcohol. Coming to that realisation can feel quite isolating so we aim to provide a support network that helps them know they are not alone and there are others in the same boat who understand what they’re going through.”
Parents are usually dealing with challenging behaviours at home that spill over into the classroom and social situations. ‘Normal’ parenting approaches just don’t work, says Claire.

She says this behaviour can include lashing out physically and verbally, not understanding consequences of their actions, and as the children get older and become teenagers their behaviour can be reckless. Claire says it is important that parents and caregivers understand the strategies that will help their children but equally, the wider community needs more education about FASD.

“Without appropriate support and understanding, those with FASD often end up leaving school with no qualifications and with damaged self-worth. This can then lead on to depression and mental health issues. Sadly, many end up on the wrong side of the law. We need a circle of care around parents and caregivers. They are the ones doing the hard yards.

Jeff’s workshops are designed to give practical ideas on how to make positive changes.

The two workshops both sold out quickly and have waiting lists. Claire says this is an indication of the level of interest and extent of the problem in New Zealand.

“We’ve been working with the Ministry of Health on the Action Plan for FASD and we wanted to provide some practical training for parents and caregivers on how to deal with FASD. We also wanted to give parents a networking opportunity. We approached the Ministry with the idea of bringing Jeff to New Zealand and they came on board to fund it.”

Jeff first got interested in FASD through his wife’s tales of working in a role supporting youth living with FASD and it wasn’t long before he got involved working at a specialised group home for youth with FASD.

“Through many, many, many learning and A-Ha! moments I was able to rise through the ranks eventually working my way from full time staff member, to team leader, to FASD Coordinator until being given the ultimate opportunity of becoming a FASD Foster Parent.”

Jeff says the workshops are FASD 101 with topics including understanding brain dysfunction, primary and secondary disabilities, a model for providing appropriate accommodations (techniques, schedules, and strategies), sensory integration and the importance of early intervention.

Retrieved from:  http://www.scoop.co.nz/stories/GE1711/S00083/parenting-a-child-with-fetal-alcohol-spectrum-disorder.htm

Volunteers Needed For Intervention Study!

Screen Shot 2017-11-19 at 1.17.19 PM

We are doing a research study on a self-regulation intervention for adolescents with Fetal Alcohol Spectrum Disorder (FASD).

We are looking for participants age 11 to 17 who have a diagnosis of FASD.

The intervention will take place over ~12 weeks and will include weekly 1-hour one-to-one intervention sessions focusing on improving self-regulation. The intervention focuses on identifying and talking about different levels of alertness as well as the use of different strategies to improve self-regulation across a variety of environments (home, school, etc.).

There will also be three testing sessions (~2.5 hours each) so we can understand the effect of the intervention. Caregivers will fill out questionnaires about their child’s history and behavior at each testing session.

If you are interested in participating or would like more information, please e-mail labfasd@gmail.com or call our FASD Research Lab 780-735-7999 ext. 15631.

Guest column: How to do holiday parties while pregnant

The Prevention Conversation: A Shared Responsibility Project

qgpofgwp6uku9syah3m3Amy Hendricks: Retrieved from http://www.citizen-times.com/story/life/family/2017/11/19/guest-column-how-do-holiday-parties-while-pregnant/850207001/

It’s hard to believe the holiday season is upon us. We’re decorating, baking cookies, going to holiday parties, shopping in a frenzy for that perfect gift, gathering with family. Maybe squeezing in that “girls night out” where everyone has promised to not exchange gifts, but to just celebrate the season with friendship, great food and drinks. This can be the most wonderful time of the year. But when pregnant or trying to get pregnant, it can be challenging to face the decision about whether to celebrate the season with or without alcohol.

Drinking and pregnancy

Why is this decision so important?

According to the Centers for Disease Control and Prevention, the American College of Obstetricians and Gynecology, and the American Academy of Pediatricians, “there is no safe amount of alcohol, no safe type of alcohol and no safe time to drink when a woman is pregnant.” And…

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N.W.T. MLAs call for formal fetal alcohol spectrum disorder strategy

pregnancy-test-dispenser

The Yellowknife Association for Community Living began its fetal alcohol spectrum disorder (FASD) awareness campaign on Friday, as some MLAs called on the government to implement a formal strategy to combat the spectrum of disorders in the territory.

The association is delivering pregnancy tests to 12 Yellowknife establishments to dispense in their washrooms.

  • FASD diagnostic clinic helps parents, teachers of affected children
  • N.W.T. health care workers get rundown on new FASD diagnostic guidelines

Lynn Elkin, executive director for the association, wants the campaign to get people thinking about the possibility they might be pregnant while they are out on the town. The pregnancy tests come with information about FASD and a collection of mocktail, or non-alcoholic, drink recipes.

“We know people were using it,” she said about the campaign in previous years. “We did have some phone calls that came where people said, ‘I’m [tested] positive and I was out at the bar last night so what should I be doing?'”

Territory should do more, say 2 MLAs
MLAs Cory Vanthuyne and Julie Green both applaud the work the association is doing. In fact, they both say they’d like to see the territorial government dedicate resources specifically to FASD awareness, prevention and support.

Vanthuyne applauds work done by Health Minister Glen Abernethy as chair of the Canada Northwest FASD partnership, but said there are areas where the government can do better.

He supports a 10-year plan to fight FASD.

“I think it’s something that would get pretty good support from the members of the Legislative Assembly,” Vanthuyne said.

Abernethy says his department is working on a disability action plan, which he says will include those with FASD, and expects to have the plan in MLAs’ hands by Christmas.

But Abernethy added that a dedicated plan to reduce FASD isn’t what the territory needs.

“We have a lot of action plans,” he said. “We need to take action rather than write these things.”

N.W.T. Health Minister Glen Abernethy says the territory does not need a specific FASD plan. (CBC)
Alberta finishes 10-year strategy to combat FASD
In Alberta, one government official says the province is “leaps and bounds” ahead of where it was 10 years ago in regards to FASD, thanks to an innovative 10-year strategy which wrapped up earlier this year.

Janice Penner, the manager of FASD initiatives with that province’s Department of Community and Social Services, explained why she felt the initiative worked.

“Our approach in working with community was absolutely critical to our success,” she said.

Through the strategy, the government of Alberta has published data that paints a clear picture of the costs of FASD in the province. Approximately 46,000 Albertans live with FASD, costing the government $837 million per year. According to the Institute of Health Economics, the Alberta Government saves $784,000 for each prevented case of FASD.

As part of the strategy, Alberta implemented the Parent Child Assistance Program which partners women vulnerable to alcoholism and addiction to a support worker for a period of three years. Through this program alone, the government estimates it prevented 31 cases of FASD between 2008 and 2011, saving $22 million.

Penner wasn’t able to provide an exact amount the government spent to implement this strategy, but estimated it was $16.5 million per year, with a bit more spent in earlier years.

No FASD research in N.W.T.
According to a department spokesperson, the Department of Health and Social Services has never studied FASD in the N.W.T.

The territorial government has also never attempted to collect prevalence rates either, but refers to national studies that suggest up to four per cent of Canadians live with it. Four per cent of the N.W.T.’s population adds up to approximately 1,760 people.

At Stanton Territorial Hospital, an FASD Community and Family Support Program completes 10 FASD assessments per year. Those 10 patients get support through the program until they are 18 years old. After that, the government refers them to the same support services offered to all residents with disabilities.

N.W.T. residents over the age of 19 can’t get a diagnosis in the territory, and the Department of Health does not offer a way for people in this age group to get a diagnosis in the South.

Elkin said she isn’t sure a multi-million dollar, 10-year strategy would make much of a difference in the territory.

“I think it’s just a matter of supporting people,” she said.

Retrieved from:  http://www.cbc.ca/news/canada/north/nwt-fasd-strategy-1.4406531?_cldee=eW9sYW5kYS5jYWJlcnRvQGNzc2FsYmVydGEuY2E%3d&recipientid=contact-05ab011b111ee7118111480fcfeab9c1-

Pregnancy: Why it’s not just mums who need to avoid alcohol

Unborn-baby

Abstaining from alcohol during preconception and pregnancy is usually considered to be the woman’s responsibility.

The main concern surrounding alcohol exposure during pregnancy often relates to well-established evidence of newborns developing a range of behavioural, physical and cognitive disabilities later in life.

But recent research is also pointing to a link between alcohol and poor sperm development, meaning the onus is on expectant fathers too. A myriad of studies are showing biological fathers who drink alcohol may have a significant role in causing health problems in their children.

Studies are showing paternal alcohol consumption has negative effects at all levels of the male reproductive system. This is as well as altered neurological, behavioural and biochemical outcomes in subsequent generations.

Men and risky drinking
In Australia, men consume alcohol at high or risky levels on a regular basis. National health guidelines recommend no more than two standard drinks on any day.

According to the National Alcohol and Drug Knowledgebase, Australian men usually drink more alcohol than women.

Data has shown males are twice more likely than females to consume more than two standard drinks per day on average over a 12-month period (24 per cent compared with 9.8 per cent).

And about a third of males said they exceeded the guideline not to drink more than five standard drinks on a single occasion on a monthly basis.

Booze and swimmers
These figures are alarming given the compelling evidence about the impact of excessive, chronic or binge alcohol consumption on sperm, semen quality, fertility and child health.

Animal studies have shown a single dose of ethanol into the stomach lining (equivalent to a human binge drinking) induces damage to the testis, damaging the cells essential for sperm formation.

In another experimental study, sperm health and fertility was assessed in male rats after administration of alcohol into the stomach for 10 weeks.

The results confirmed alcohol significantly reduced sperm concentration and the ability of the sperm to move properly. And none of the rats exposed to alcohol fertilised the females, despite confirmation of successful mating.

A myriad of other non-human studies have also shown similar results, suggesting ethanol has the ability to damage sperm and fertility.

Studies in humans have also supported these findings. A recent study of 1221 young Danish men (18-28 years of age) tracked alcohol consumption in the week preceding the study to determine its effects on semen quality (volume, concentration, total count, and shape).

The results showed sperm concentration, total sperm count and percentage of sperm with normal shape got worse the more the men drank.

This association was observed in men reporting at least five units of alcohol in a typical week, but was most pronounced for men with a typical intake of more than 25 units a week.

This suggests even modest habitual alcohol consumption of more than five units a week can negatively affect semen quality.

A recent review of studies and meta-analysis of population data replicated many of these findings. The main results showed daily alcohol intake at moderate to high levels had a detrimental effect on semen volume and normal shape.

The effects on children
Limited studies have tracked the drinking patterns of fathers around the time of conception and subsequent health outcomes of the child.

But rodent models have shown changes in offspring weight and development, learning and activity, anxiety related behaviours and molecular and physiological effects.

A study also reported the women whose partners consumed 10 or more drinks per week prior to conception had two to five times increased risk of miscarriage compared to those whose partners did not drink during preconception.

Other studies provide some preliminary evidence that paternal preconception alcohol use is associated with acute leukemia at high-level use, heart malformation with daily use, microcephaly with low to moderate use, and effects in relation to fetal growth and mild cognitive impairments.

How can alcohol affect kids before they’re born?
The exact mechanism of how alcohol alters developing sperm and the later health outcomes of the foetus is still not yet fully understood.

It has been suggested alcohol can change the micro-environment within the testes, altering the development and maturation of the sperm.

It’s also been suggested alcohol can influence sperm by creating genetic alterations and epigenetic marks.

This means changes to gene expression occur without changes to the underlying DNA sequence. These epigenetic marks can be transferred at the time of fertilisation. This can subsequently alter the molecular makeup of the early embryo, leading to alterations in foetal development and the potential to impair offspring health.

The biggest hurdle for researchers now is continuing to translate findings from the basic sciences to more sophisticated research in humans.

The next stage is to identify patterns of alcohol use by men during the preconception period on foetal and childhood outcomes in the Australian context.

But most importantly we need to realise decisions about alcohol use during the preconception period are not the sole responsibility of women.

We need to be talking to men about these issues to ensure healthy outcomes for the baby.

retrieved from:  http://thenewdaily.com.au/life/wellbeing/2017/11/07/pregnancy-men-alcohol/?platform=hootsuite

FASD Think Tank: 101 Holiday Strategies for Fetal Alcohol Spectrum Disorders Supporting yourself and your family

parental stress associated with raising autistic child

Holidays are a tough time for our kids. We may place pressure on ourselves to try to make holidays perfect. What matters is family and love and learning to live and appreciate each other for our unique gifts. Our kids do the best they can and if other people (aka, family) can’t understand that and you have tried to explain numerous times, just ignore them. Cut yourself and your kids some slack-scale back, stay home and enjoy the moments whenever you can get them. 

Holidays are meant to be joyful, happy occasions. 
Do the best that you can. 
You do not have to apologize for doing 
what is appropriate for your family. 
Meltdowns are not pretty and very few people understand they are not enormous temper tantrums. They can last anywhere from a few minutes to an hour and when they are over everyone is exhausted. What has your family done to make it easier for your young people? Following is our recent discussion on FASD Think Tank – we hope our cumulative experiences will help your families enjoy brighter holiday celebrations.
Create good sense.

Realize the world especially during the holiday seasons may assault our children’s senses. 

  • Have a go bag (sometimes called a busy bag) for your event with things to occupy child –  headset, video game, colour books, washable crayon or markers, paper, playdoh, picture books, beloved stuffed toys,  favourite music or a craft everyone can do. Bring their pillows and blankets. One child may enjoy popping small bubble wrap bubbles another may feel assaulted by that sound. 
  • Bring a crash pad – a bean bag, body pillow, sleeping bag or tent. You can also use a small folding table and add a sheet for a fort.

Sound – Have a supply of earplugs handy. Disorganized noise can be a disaster.  If music soothes your young person, use it, but do so judiciously; if the music is an irritant, keep it off or to a minimum.

  • The train under the flashing lights on the tree can be like standing in an Amtrak station
  • Shopping in the grocery store or mall can feel like an earthquake. Find spots in the mall/store that are quiet to have a retreat – quiet hallways or aisles without decorations
  • Multiple normal talking voices can feel like screams

Touch – If your young person is not good at ‘dressing up’ be happy they are just wearing clothes to whatever event and let the rest go.

  • Give a soft matching t-shirts or sweatshirts to everyone as gifts, make sure they are sensory friendly to your child and involve your child in the process. This makes a family silly photo easier.
  • New pretty clothes scratch, pull, tug and itch – trying online shopping at http://www.softclothing.net/
  • Test drive the clothes before the event and see if there is going to be trouble brewing
  • Bring additional comfy clothes and shoes to change in later. A set of warm favourite pyjamas to go home in or a favourite stuffed toy, blanket or sleeping bag.Consider a hot bath for your child before leaving a family function.
  • Model alternatives to hugs and kisses.  If you don’t want a hug, you could….  Blow a kiss. Give a high five or touch thumbs. My kids did elbow and toe shakes as a greeting. Role play the business firm handshakes. 
  • Use “Happy Feet” to put on shoes – if they are lined up correctly the shoes will smile at each other. If they are not lined up right them will frown and have a sad face.

SmellHoliday scents make bring back memories and also may be overwhelming

  • We always brought Peace and Calm essential oil – you can use a sent that the child loves the most for calming – lavender, cedarwood – put it into a ziplock bag to sniff. 
  • Swimming nose plugs dull scents and can look fun and silly – bring more than one if you are using them so other kids can join in the fun.

SightIf the celebration is in a room with fluorescent lights, be aware the room may be very noisy and moving for your young person.

  • A pop up tent can be a fun refuge or building a fort (approved by host)
  • Bring some fun sunglasses
  • Bright lights and colours can be overwhelming and give anyone a headache.
  • Bring a night light

DietIf the child is on a special diet, find out the menu

  • Offer to bring some yummy favourites to share.
  • If sugar is a sure send off for your child – bring his favourite dessert, have him help make it to share with everyone
  • Sensory input and nutrition every 2 hours
  • Create appetizers for all the kids in zip lock baggie – add holiday stickers – put in fun things to try – sweet idea (small marshmallow, M&M, kisses) – sour (green olive, little pickle, black olive) – crunchy idea – (crackers, chips or veggies)  
  • Make ice cream in three zip lock baggies and toss them to make the ice cream.
  • Make edible playdough for everyone to play with.

Motor SkillsIf poor fine or gross motor skills is a problem

  • Offer to wrap presents for them or do it together with good eats/drinks and make it fun (and never criticize);
  • Practice unwrapping presents before you get to an event. 
  • Offer the choice of a bowl or a plate, plastic or china to eat off.
  • Bring safe treaded warm slippers to keep feet warm
  • Try to move from one side of the yard to the other without stepping on grass
  • Be prepared for wiggle buns – have white paper placemats children can draw or colour on. We always have kid-friendly side tables and if they must sit at a table figure 10-15 minutes of good behaviour for some children is maxed and they can “ask to be excused.”
  • Play with the boxes – you can climb in them, slide down them, roll inside of them, fill them with foam peanuts or wrapping and sit or jump in them, you can stack them and smack them, sleep or cuddle. Think of your own box ideas.

For more tips please visit: http://fasdthinktank.blogspot.ca/2012/12/holiday-strategies-for-fetal-alcohol.html?spref=tw

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