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Fetal Alcohol Spectrum Disorders
Education Program

Contact person: Elaine Cousineau, FASD Coordinator
Contact information: (705) 472-6515 ext. 259

On April 2nd, the Ontario Trillium Foundation announced that Community Counselling Centre of Nipissing would receive $120,800 over two years to promote education and awareness about Fetal Alcohol Spectrum Disorder.

In year one, we will prepare an FASD information package & presentation materials, deliver 50 presentations to a cross sector audience, and create a community vision for FASD services. In year two we will conduct another 50 presentations and complete a Memorandum of Understanding that specifies a collaborative set of responsibilities across multiple sectors that will create a network of supports and services for those afflicted by FASD.

During each year of the project, 50 presentations/workshops will be delivered to the following audiences:
- primary, secondary, college and university students and teachers
- individuals and families affected by FASD
- social services
- health and justice agency staff
- religious organizations

An FASD Community Education Coordinator has been hired and over the next two years, she will be addressing residents in the city of North Bay and in as many outlying areas as possible including Mattawa, Sturgeon Falls, Powassan, Temagami and Parry Sound Communities.

Please feel free to contact the coordinator to arrange for a personal, private conversation at your convenience. The following people have expressed appreciation for being able to learn more about FASD through our coordinator:

- Families coping with having a family member pre-natally exposed to alcohol
- Educators such as classroom teachers, teaching assistants, principals, Special Education teachers
- Students in secondary school, community college and university
- Lawyers
- Police Officers
- Probations and Parole officers
- Social Workers
- Adoptive Parents
- Biological mothers
- Biological fathers
- Individuals who are afflicted with FASD

If you belong to an organization, service group, or church congregation, you may wish to invite the FASD coordinator at Community Counselling Centre to speak at one of your meetings. She would be eager to dispel some of the myths about Fetal Alcohol Spectrum Disorder. These presentations will be at no cost to you or your organization due to the generosity of the Ontario Trillium Foundation.

Many families are anxious about the fact that their children have been exposed to alcohol while in the womb. Here are some of the characteristics of damage from alcohol before birth which are taken from Theresa Kellerman’s website site. ( See http://www.come-over.to/FAS)

Babies diagnosed with Fetal Alcohol Syndrome (FAS) have the following physiological characteristics:
• Small birth weight
• Small head circumference
• Small eye openings
• Smooth, wide philtrum
• Thin upper lip

Babies who have some but not all of these characteristics may be diagnosed with partial Fetal Alcohol Syndrome (pFAS).

Note: Facial characteristics may not be as apparent immediately after birth or during adolescence or adulthood as they are between the ages of two and ten. Facial characteristics may not be present at all if the mother did not drink alcohol during the brief period that the midface was forming - around the 20th day of pregnancy.

If the facial characteristics are not visible, the child may not get a diagnosis of FAS, but may have the same neurological symptoms and behavior challenges as children with full FAS. Only about 20% of affected children receive a diagnosis of FAS. The other 80% have partial FAS or Alcohol Related Neurological Disorder (ARND). Together FAS and ARND make up the broad category called Fetal Alcohol Spectrum Disorders (FASD). See "What is FAS and FASD?": http://www.come-over.to/FAS/whatisfas.htm

Most infants with FASD are irritable, have trouble eating and sleeping, are sensitive to sensory stimulation, and have a strong startle reflex. They may hyperextend their heads or limbs with hypertonia (too much muscle tone) or hypotonia (too little muscle tone) or both. Some infants may have heart defects or suffer anomalies of the ears, eyes, liver, or joints.

Most children with FASD have developmental delays and some have lower than normal intelligence. Only 15% of children with FASD have an IQ under 70. Most children with FASD have IQ in the normal or above normal range.

The most serious characteristics of FASD are the invisible symptoms of neurological damage from prenatal exposure to alcohol. These symptoms persist into adulthood and include the following:

• Attention deficits
• Memory deficits
• Hyperactivity
• Difficulty with abstract concepts
• Inability to manage money
• Poor problem solving skills • Difficulty learning from consequences
• Immature social behavior
• Inappropriately friendly to strangers
• Lack of control over emotions
• Poor impulse control
• Poor judgment


These symptoms are not just "behavior problems" but are "soft signs" - symptoms of permanent, unchanging damage to the brain (static encephalopathy) and are not within the child's control. Although psychological factors such as abuse and neglect can add to the intensity of the problems, the behaviors should be viewed first and foremost as a result of brain damage from alcohol.

Adults with FASD have difficulty maintaining successful independence. They have trouble staying in school, keeping jobs, or sustaining healthy relationships. They require long-term support and some degree of supervision in order to succeed.

Without appropriate support services, these individuals have a high risk of developing secondary disabilities such as mental health issues, getting into trouble with the law, abusing alcohol and other drugs, and unwanted pregnancies.

Children and adults with FASD are also quite vulnerable to physical, sexual, and emotional abuse.



According to Dr. Ann Streissguth, a professor in the Department of Psychiatry and Behavioral Sciences at the University of Washington School of Medicine, there are five environmental factors, to consider in preventing the Secondary Characteristics of Fetal Alcohol Spectrum Disorder. In her book Fetal Alcohol Syndrome: a Guide for Families and Communities (pg. 111), Dr. Streissguth lists the following factors:

1) living in a stable and nurturing home of good quality
2) not having frequent changes of household
3) not being a victim of violence
4) having received developmental disabilities services
5) having been diagnosed before 6 years of age

In her book, Fetal Alcohol Syndrome: a Guide for Families and Communities (pg. 108) Dr. Streissguth also lists these six Secondary Disabilities:
1) Mental Health Problems
2) Disrupted School Experiences
3) Trouble with the Law
4) Confinement
5) Inappropriate Sexual Behavior
6) Alcohol and other Drug Problems


Frequently Asked Questions:
The Public Health Agency of Canada published a booklet in 2005 answering the following questions:

Q. What is Fetal Alcohol Spectrum Disorder (FASD)?
A. FASD is a term that describes a range of disabilities that may affect people whose birth mothers drank alcohol while they were pregnant.


Q. How do you get FASD?
A. The only way someone can get FASD is if their birth mother drank alcohol when she was pregnant. Alcohol causes brain damage in the developing baby.

THERE IS NO SAFE AMOUNT OF ALCOHOL DURING PREGNANCY. There is also is no safe TIME to drink alcohol during pregnancy.

There is no gene for FASD! This means that a mother who is diagnosed with FASD will not pass it to her child if she does not drink when she is pregnant.


Q. Can FASD be cured?
A. Unfortunately, FASD cannot be cured. People live with FASD for their entire life. However, people with FASD can still do very well with helpful supports and services. Some examples include special education, vocational programs, tutors, structured environments, and life long care. They can find paid work or go to school if given special assistance.


Q. What’s different about the way people with FASD may behave?
A. If women drink when they are pregnant, their babies may have brain damage. This means that children and adults who are affected may have difficulty learning and controlling their behaviour. For example, they may appear to learn how to do a new task one day, and not remember the next.
Other common problems include:
• having trouble adding, subtracting and handling money;
• thinking things through/reasoning;
• learning from experience; understanding consequences of their actions;
• remembering things
• getting along with others.

Because of their disabilities, people who are affected by FASD may have special needs that require life long help-even throughout adulthood-regarding:
• handling money, such as paying rent and buying food;
• learning from their experiences and making changes in their behaviour
• understanding consequences of their behavior, or “cause and effect ”;
• interacting with other people socially
• keeping a job.

Affected people may:
• develop mental health problems
• have trouble with the law
• drop out of school (or be disruptive in a classroom)
• find it difficult to hold on to a job
• develop alcohol and drug problems
• be homeless.

We also know that people with FASD may be very good at many things. They may be loving, affectionate, friendly, artistic and musical, They may work well with animals and plants, be very loyal and show a great determination to succeed in life!


Q. How do you know if you have FASD?
A. Anyone may have FASD if their biological mother drank alcohol during pregnancy and they may have problems with learning, remembering things, attention span, communicating, doing math and or controlling their behavior. People with FASD may be small, their faces may look different, and they may have vision and /or hearing problems.
It is sometimes confused with developmental delays and behavioral difficulties. Only a specially-trained doctor can tell for sure and give a complete diagnosis.


Q. How many people have FASD?
A. FASD affects approximately 1% of people living in Canada. This means that there may be about 300,000 living in Canada today with FASD. People of all ages may be affected. (Public Health Agency of Canada)


More Questions?
To obtain a copy of Fetal Alcohol Spectrum Disorder printed in 2005 by the Public Health Agency of Canada, please call the FASD Information Service (Canadian Centre on Substance Abuse), and information and reference service at 1 (800) 559-4514 and ask for Publication No.: 4200. (Cat. NO.: H124-4/2004; ISBN: 0-662-68619-5)

Other questions answered in the pamphlet are:
1. How much drinking by the biological mother can cause FASD?
2. Can biological fathers cause FASD?
3. Does drinking during breastfeeding cause FASD?
4. Can FASD be prevented?

A copy of the Public Health Agency of Canada’s pamphlet is also available at Community Counselling Centre. To receive a free copy, call (705) 472-6515 ext. # 259 or send your name and address with postal code to:

FASD Education Coordinator,
Community Counselling Centre
361 McIntyre Street East,
North Bay, Ontario.
P1B 1C9



Resource Library
(Call FASD Education Coordinator at (705) 472-6515 ext.# 259 to borrow resources for a two week period.)


Books:
1. Alcohol and Pregnancy No blame – No shame! By Elizabeth Russell
2. But Michael Makes Me Laugh by Lori Stetina
3. Calming the Storm (Strategies for children with FASD) by Joanne Lussier-Ring
4. Children with Prenatal Alcohol and/or Other Drug Exposure:Weighing the Risks of Adoption by Susan B. Edelstein
5. Damaged Angels by Bonnie Buxton
6. Fantastic Antone Grows Up by Judith Kleinfeld with Barbara Morse and Siobhan Wescott
7. Fantastic Antone Succeeeds by Judith Kleinfeld and Siobhan Wescott
8. FASD Strategies not Solutions (www.region6fasd.ca)
9. Fetal Alcohol Syndrome and the Criminal Justice System by Julianne Conry, Ph.D. and Diane K. Fast, M.D., Ph.D.
10. Fetal Alcohol Syndrome/Effect: Developing a Community Response by Jeanette Turpin and Glen Schmidt
11. Fetal Alcohol Syndrome: A Guide for Families and Communities by Dr. Ann Streissguth
12. Finding Perspective…Raising Successful Children Affected by Fetal Alcohol Spectrum Disorder by Liz Lawryk and Parents Everywhere
13. Let’s Talk FASD by VON CANADA
14. Living with FASD: A Guide for Parents by Sara Graefe for SNAP Canada
15. Message in a Bottle: The making of Fetal Alcohol Syndrome by Janet Golden
16. Our FAScinating Journey by Jodee Kulp
17. Strategies for Employment Services and Specialists-and parents and caregivers (with particular emphasis on Fetal Alcohol Spectrum Disorder) by Elizabeth Russell
18. The best I can be living with Fetal Alcohol Syndrome or Effects by Liz Kulp
19. The Broken Cord by Micheael Dorris
20. The Challenge of Fetal alcohol Syndrome: Overcoming Secondary Disabilities by Dr. Ann Streissguth and Jonathan Kanter
21. Trying Differently Rather Than Harder by Diane Malbin, M.S.W.


Booklets:
1. Employability (Living with Fetal Alcohol Spectrum Disorder) by Nancy Schneider
2. Fetal Alcohol Spectrum Disorder (FASD) by Public Health Agency of Canada
3. Fetal Alcohol Syndrome/Fetal Alcohol Effects: Strategies for Professionals by Diane Malbin, M.S.W.
4. Rage: A layperson’s guide to what to do when someone begins to rage 2nd Edition by Paula Cook
5. Rainey and Red –A book for adults with Fetal Alcohol Spectrum Disorder by Heather McFarlane
6. Sensory Integration Dysfunction-A Layperson’s Guide By Paula Cook
7. Talk……some other perspectives 2nd Edition by Paula Cook


Children’s Books
1. Polly Anna The Second by Heather McFarlane
2. Simon says… by Heather McFarlane


Videos
1. Andrew’s Story by the Alcohol related Birth Defects (ARBD) Committee in Sault Ste. Marie, Ontario
2. David with F.A.S. by The National Film Board of Canada


DVD’s
1. can’t, not won’t by The Mennonite Central Committee
2. Gary and The Angels ( A film about Fetal Alcohol Syndrome and life) by Gary Murphy
3. The Listening Heart (DVD from National Training Institute)
4. Understanding the Offender with FAS: Video 1 of 3 A Judge’s Perspective by Judge Cunliffe Barnett
5. Understanding the Offender with FAS: Video 2 of 3 A Judge’s Perspective by Judge Cunliffe Barnett
6. Understanding the Offender with FAS: Video 3 of 3 A Judge’s Perspective by Judge Cunliffe Barnett



1) Individual or group presentations are available upon request

2) Some books and videos can be borrowed for two weeks

3) Damaged Angels, written by Ontario journalist Bonnie Buxton is available for $25 from the FASD coordinator at Community Counselling Centre, in North Bay. (705) 472-6515

4) Family Support Group activities occur in North Bay periodically.

5) To find a support group in Ontario, go to http://www.fasworld.com/support.asp

6) The following websites have been helpful for many families.
www.fasworld.com
http://fasstar.com
www.fasdjustice.on.ca
www.faslink.org

7) Please call 705 472-6515 ext. # 259 for more information


ARE YOU PART OF THE PROBLEM?
BE PART OF THE SOLUTION?
If you think you have the answer to any of the following questions please send your responses to ecousineau@cccnip.com

1. Since 1% of people living in Canada, are affected by FASD, (four times as many people as those with AIDS/HIV according to FASworld Canada), how can we motivate society to address the Fetal Alcohol Spectrum Disorder issue in your community and your province?

2. In FASworld Canada’s literature it is stated that individuals with FASD who are now alive in Canada will cost the taxpayers about $600 billion. Who do you think should pay for the services, counselling and support that is necessary for the rest of their lives?

3. According to Dr. Ann Streissguth Ph.D., the Director of the Fetal Alcohol and Drug Unit and Professor in the Department of Psychiatry and Behavioral Sciences at the University of Washington, School of Medicine in Seattle, infants and children with FASD, “often appear physically quite ‘normal’ which can prevent them from obtaining the help and services they need”. How, then, can our community help our afflicted children/youth/adults who are frequently very talented and capable in many areas, to reach their potential?

4. British Columbia Lawyer, David Boulding, states that “Fetal Alcohol Spectrum Disorder means permanent brain damage and that psychiatric drugs and jail time will not repair lost brain cells or bring back absent brain functions”, so what suggestions do you have to keep a youth with FASD from re-offending?


This project has been made possible thanks to the generous support of the Ontario Trillium Foundation
 
 
The Ontario Trillium Foundation is an agency of the Government of Ontario. For over 25 years, the Foundation has supported the growth and vitality of communities across the province.  OTF continues to strengthen the capacity of the volunteer sector through investments in community-based initiatives.  For more information, please visit www.trilliumfoundation.org.

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