Author: edmontonfetalalcoholnetwork

Tips: Dating & Sexuality

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tips-647_010617104706All persons are sexual beings and this doesn’t change just because someone has a FASD diagnosis. Individuals living with FASD have the right to express sexuality and affection and to all the information about sexuality he/she can understand. They will experience all the normal hormonal surges as any other developing young person, however, their social development and understanding may not match their biology.

Therefore it is important that we, whether caregivers, professionals, friends or family, are having open and honest conversations or we may be increasing their risk of engaging in inappropriate sexual behaviors and/or becoming, victims or perpetrators (or both). Below are some suggestions for how to prepare and have these conversations and what they should include. If you have more suggestions not mentioned here, please comment so others can learn from your experience!

1. There is no right or wrong person to have these conversations with them but someone should.

2. Get comfortable having the conversation. If they can’t talk to you, they will find someone to talk to about it. Talking about sex can be uncomfortable for many people, especially when it comes to having those conversations with our children (even if they’re adults!). If you’re uncomfortable though, they’ll be uncomfortable and you want to create an environment that allows them to speak openly and ask questions. Practice what you’ll say beforehand or roleplay the conversation with a friend or family member prior.

3. Practice things like how to shake hands, hug, and touch others respectfully.

4. Teach them to ask permission before touching.

5. Be internet savvy! There is a plethora of information online, not all of which is accurate or safe. Monitor what they are accessing on their phones/computers. Keep in mind however that, for teens and young adults especially, the internet is part of their social world and they will and should be taught how to do this safely.

6. Topics addressed should be appropriate for their chronological age but might include: body part identification, personal care and hygiene, healthy relationships, rights and responsibilities, assertiveness (right to say no for both parties), contraception and pregnancy (and options), childbirth, masturbation, sexual abuse/assault/harassment, puberty, menstruation, medical care.

7. Use specific, concrete language but also define common slang terms they may hear while with their peers. Making word charts with synonyms can be helpful to ensure the individual knows what is being talked about.

8. Discourage/cue inappropriate displays of affection and provide clear behavior expectations.

9. Provide clear descriptions of what is acceptable in private settings as opposed to public settings (eg. ‘making out’ in private vs. holding hands in public).

10. Allow them to practice with you, or someone else they can trust. Have them roleplay asking someone out on a date and receiving both a yes and no answer so they can learn how to respond appropriately to various, often unpredictable, scenarios.

11. Have them practice saying ‘yes’ outloud and waiting for the other person to say yes outloud as well. Verbal consent is more concrete and doesn’t require them to read social cues others might rely on.

12. Rules should be clear, simple and absolute. For example, teach that unprotected sex is never safe, always use a condom.

13. Provide age limits. Age of consent laws can be very confusing so giving concrete acceptable age ranges for who they can engage in sexual behavior with will help avoid conflicts.

14. Encourage multiple forms of protection in case one is used incorrectly or forgotten (e.g. birth control pills and condoms).

15. Provide concrete, hands-on demonstrations where available (e.g. how to put on a condom etc). Show them what birth control looks like, provide reminders/cues to take daily etc.

16. Depending on their age and ability, supervision is recommended. This does not always have to be you though – perhaps an older sibling or cousin could go on a double date with them.

Vancouver teacher is schooling educators on the value of inclusive classrooms

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Shelley Moore, an educator and speaker about special needs students, photographed at the Yellowknife Catholic Schools District offices.

Shelley Moore learned her biggest lesson from beneath a classroom desk – one that would shape the direction of her career.

A new teacher in the Richmond, B.C., school district, Ms. Moore was assigned to work with high-school students who had significant disabilities. Early in her career, she faced a particular challenge: coaching a 17-year-old deaf, blind and autistic boy who felt safest when under his desk.

She learned that the teen loved math, and so she would use flashcards to ask him related questions.

But he would sit there, under his desk, seemingly inattentive and flipping through the pages of a dictionary.

It wasn’t until a few days later that Ms. Moore noticed he was working out the math problems and then flipping to that numerical page in the dictionary. It was a transformational moment that would, almost a decade later, take her work beyond the four walls of that classroom and make her an unofficial but highly sought-after guide on inclusive education.

“It was a really big lesson. The learning I had that day was not about me learning about his disability, but it was my inability to see that he was competent,” Ms. Moore recalled in a recent interview. She has repeated that story to audiences of educators.

Several provinces have struggled with including children with developmental disabilities in regular classrooms, even as they’ve moved toward a model of inclusive education over the past few decades.

In Alberta, the use of isolation rooms for students with behavioural issues has come under the spotlight and Minister of Education David Eggen has appointed a panel to draft strict guidelines on their use. Meanwhile, People for Education, an advocacy group in Ontario, released a recent survey that found students deemed to have special needs are increasingly asked to stay home for at least part of the day. And another advocacy group, Inclusion BC, published a report earlier this year of what it described as “disturbing practices,” including a student left in seclusion for more than three hours, another tied to a chair and others restrained with straps or cuffs.

Ms. Moore, 39, has worked with educators in all three provinces, guiding them in how to support children with complex and diverse needs.

She was once one of those children. Ms. Moore has a learning disability, which manifested itself in behavioural issues at school. She struggled and eventually was expelled. After that, she was placed in alternative school.

Ms. Moore said she thrived there because of teachers who found a way to work with her and support her – a lesson she would apply years later to the boy underneath the table.

Click here to read full article.

Young people in detention facing significant communication barriers

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Lead researcher Natalie Kippin

A study revealing significant levels of language difficulty among detainees at the Banksia Hill Detention Centre underscores the need for more support for young people trying to navigate the justice system, Telethon Kids Institute researchers say.

The research, published in the International Journal of Law and Psychiatry, found many of the teenagers assessed as part of the study had language skills well below that expected for their age, with almost half meeting the criteria for language disorder. Much of the language disorder was associated with Fetal Alcohol Spectrum Disorder (FASD).

The research also revealed that language diversity was common, with Standard Australian English not the first or even second language for many of the young people.

Lead researcher Natalie Kippin, a speech pathologist with the Alcohol and Pregnancy & FASD research team at Telethon Kids, said these communication barriers meant many young people were going through highly verbal legal and rehabilitation processes at a significant disadvantage.

“Effective two-way communication skills are needed at all points of the justice system – from contact with police through to court appearances and programs in detention,” Ms Kippin said.

“A young person with language disorder and/or FASD can find it hard to comprehend and communicate effectively. Similarly, language diversity – not a disorder, but simply a difference in language – can pose significant barriers to understanding youth justice processes.

“If you’ve got kids who don’t understand what’s being said – particularly the complex vocabulary and grammar used in legal interviews and meetings – it’s difficult for them to understand expectations and comply with instructions.”

Young people with language disorder could also be less able to provide accurate and coherent explanations about alleged events or criminal behaviour.

“Legal interviews require story re-telling, and recalling and sequencing detailed events can be tricky for those with language disorder,” Ms Kippin said. “These young people may also have trouble participating in and benefiting from youth justice education and behaviour change programs.”

The study is a follow-on from the broader Banksia Hill project, which earlier this year revealed that almost 90 per cent of the young people assessed for the project had at least one form of severe neurodevelopmental impairment.

Click here for full article.

Helping the economic recovery reach all Albertans

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The province is working to ensure all Albertans can benefit from the economic recovery by ensuring people with disabilities or low income Albertans have stable, predictable supports.

 

Helping the economic recovery reach all Albertans

Premier Notley and Minister Sabir announce details of proposed legislation that would help the province’s economic recovery reach vulnerable Albertans.

 

If passed, An Act to Combat Poverty and Fight for Albertans with Disabilitieswould index social benefits like Assured Income for the Severely Handicapped (AISH) with inflation. It would also recognize increases to the cost of living by providing a one-time increase to AISH and Income Support.

“An economic recovery that doesn’t reach every kitchen table is no recovery at all. We are committed to helping make life better for all Albertans and this bill would make life more affordable for our most vulnerable citizens, and help ensure everyone has the chance to succeed and live with dignity.”

Rachel Notley, Premier

The legislation would mark the first increase to AISH benefits since 2012. In future years, benefit rates for financial assistance programs, including AISH, Learners Benefits and Barriers to Full Employment supports, would be connected to the Consumer Price Index.

“This legislation would provide greater protection and predictability for vulnerable Albertans who rely on these benefits. For too long, Albertans with disabilities have struggled to pay rent and put food on the table. This legislation would not only provide better supports today, but ensure people on AISH and low-income Albertans won’t need to fight to afford the basics tomorrow.”

Irfan Sabir, Minister of Community and Social Services

Nearly 250,000 Albertans receive support through AISH, Income Support or Seniors Benefits. If passed, the legislation would make Alberta one of only four jurisdictions that indexes disability and income support benefits, and one of only two that indexes seniors benefits with inflation.

“I acquired my disability 14 years ago and a lot has changed in 14 years. This cost-of-living increase means the government recognizes the AISH program needs to change with the times. It will take away the desperation of managing my finances in the face of yearly inflation.”

Ian Young, AISH client, writer and advocate

To ensure Albertans with disabilities can plan for the future without eroding their savings, the legislation would also increase savings limits to match general eligibility criteria for the AISH child allowance ($100,000 instead of $3,000), and the AISH supplementary personal benefits from $3,000 to $5,000.

“We are pleased with the government’s decision to increase AISH and the income programs and, most importantly, to index them. Poverty isn’t just about money, but it is always about money. These actions will make a big difference in the lives of our most vulnerable Albertans.”

Franco Savoia, Vibrant Communities Calgary

The legislation comes after government’s ongoing discussions between the disability and poverty reduction communities.

“Indexing these vital programs will reach individuals and families that are in the greatest need and will enhance Alberta’s continuing initiatives to prevent poverty. End Poverty Edmonton has advocated for these changes and we would like to applaud this government for working to ensure all Albertans can afford their daily costs into the future.”

Michael Phair, End Poverty Edmonton

“An increase to social assistance benefits will give women the ability to independently meet their most basic needs. Organizations like YW Calgary can offer programs to support women and their families with counselling or housing or employment supports, but if they can’t buy toothpaste or choose their own food, they can’t really move forward. These long overdue increases to benefits will have a direct impact on women’s lives and enable them to think about their futures and how they can contribute to community.”

Elsbeth Mehrer, YWCA Calgary

“We believe that without adequate income people can’t get by, and without assets people can’t get ahead. By indexing critical benefits to the cost of living and raising the liquid asset limits for Albertans to access Income Support, the provincial government will reduce the financial stress for thousands of Albertans and create the opportunity for these individuals and families to exit the income support system when possible and move forward in their lives.”

Jeff Loomis, Momentum

The legislation is a key component of Alberta’s Action on Poverty plan, which includes actions across government to make life more affordable, support wellness and social inclusion, enhance skills and employment opportunities and invest in affordable housing and homeless supports.

Quick facts

  • If passed, the legislation would come into effect on Jan. 1, 2019.
  • Quebec, Yukon and Manitoba index disability and income support benefit rates with inflation.
  • Yukon is the only other Canadian jurisdiction that indexes their seniors’ benefits with inflation.
  • If passed, the government will invest approximately $46 million in 2018-19 and $194 million in 2019-20 to support the legislation.

Edmonton Fetal Alcohol Network Meeting Minutes

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Screen Shot 2018-11-06 at 7.11.00 PM Did you miss our Network meetings yesterday? No worries, check out the meeting minutes here!

Towards a Standard Canadian Definition of FASD

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canfasd

At CanFASD, we have been working to create a common definition of FASD for use in a Canadian context.

We believe that if all governments, service agencies, and researchers use a common definition of FASD, it will:

  • Reduce stigma, given that many existing definitions are quite harsh and use incorrect or outdated information
  • Increase understanding of the disability
  • Increase consistency in our messaging
  • Reduce confusion

When talking about FASD, we recommend that individuals avoid:

  • Referring to FASD as something that is “caused by” or is “the result of” a mother consuming alcohol while pregnant, as this can inadvertently place blame
  • Fatalistic terminology and phrasing (e.g., “with no cure”, “devastation”, “preventable”, and “average life expectancy”)
  • Outdated terms, like “mental deficiency” and “mental retardation”
  • In line with our language guide, avoid the terms primary and secondary disabilities

Our draft definition has received feedback from our CanFASD staff, our team of Research Leads, as well as the Canadian Northwest FASD Partnership. However, we would also like to receive feedback from you, our blog followers, about our definition.

Fetal Alcohol Spectrum Disorder (FASD) is a diagnostic term used to describe impacts on the brain and body of individuals prenatally exposed to alcohol during pregnancy.

FASD is a lifelong disability. Individuals with FASD may experience challenges in their daily living, and need support with motor skills, physical health, learning, memory, attention, emotional regulation, and social skills.

Each individual with FASD is unique and has areas of both strengths and challenges.

Please send any feedback to Dr. Kelly Coons-Harding at kelly.harding@canfasd.ca.

20 myths about fetal alcohol spectrum disorder debunked

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Awareness of FASD is on the rise, but many parents and health professionals are yet to recognise the symptoms of the disorder, or the scale of the problem. Children from all backgrounds are affected, making this a hidden epidemic behind many behavioural and learning issues.

In July this year the Australian Psychological Society (APS) hosted a public lecture presented by Clinical Neuropsychologist Associate Professor Carmela Pestell. She addressed the top 20 myths related to FASD, with the main themes being prevalent diagnostic issues, information about drinking guidelines, why drinking is particularly harmful to the developing fetus, how we diagnose FASD, the symptoms of FASD and what we can do about it.

Read the transcript

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