192 Sandpiper Drive
Canada N7S 0G1
Phone: (519) 331-6408
What you drink, baby drinks too.
FASlink around the world.
CCSA - Canadian Database of FASD Resources
NOFAS - National & State FASD Resource Directory
To ignore the facts does not change the facts.
Households with disabilities are always in "survival mode".
Remember - we cannot tell or teach them what to think - but have to work at "how to think"
If you tell a child something a thousand times and he still does not understand, it is not the child who is a slow learner. To be an effective teacher, you have to always be open to learning.
Parenting is normally done by amateurs. By the time we get to be reasonably competent we are no longer fertile.
Parents tend to transfer many of their own neuroses and emotional baggage to their kids. Kids with FASD simply emphasize many of the "normal" child raising concerns as well as add a bunch of others.
If you are going to train a puppy, first you have to train the trainer, and deal with the trainer's issues. If you have a stressed-out parent you will have a very stressed out child. One of the greatest gifts we can give to our children is being calm, particularly under stress.
Another great gift is that of unending patience. Without patience, you will drive both your child and yourself nuts.
An equally important gift is an off-the-wall sense of humour. Our kids can find humour in the neatest places. The best way to defuse a confrontation is with humour. You may be able to escalate a power struggle to where you can "win" and get immediate compliance, but everyone loses in a power struggle.
Pick your battles carefully. Don't set yourself up to be permanently "tuned out".
FASlink submission to WHO survey on health problems related to alcohol consumption.
Fetal Alcohol Spectrum Disorders (FASD), Fetal Alcohol Syndrome (FAS), Fetal Alcohol Effects (FAE), Partial Fetal Alcohol Syndrome (pFAS), Alcohol Related Neurodevelopmental Disorders (ARND), Static Encephalopathy Alcohol Exposed (SEAE) and Alcohol Related Birth Defects (ARBD) are all names for a spectrum of disorders caused when a pregnant woman consumes alcohol. FASD is 100% preventable. If you are pregnant or plan to become pregnant, don't drink any beverage alcohol. There is no known safe level.
Faslink is funded through voluntary donations. We depend on you for being able to continue our services. . Our membership is worldwide but most are in Canada and the USA, from the most remote locations to urban centers. You can join the FASlink Discussions.(.....more)
"Kalee" by SanGia
VoiceAmerica Internet Radio
Family Caregivers Unite!
with host Dr. Gordon Atherley and guests
Young adults, Mental Health and the Justice System
Aired September 27, 2011
[Download MP3] [itunes] [Bookmark Episode]
Advice about the advice that’s given to family caregivers
Dr. Dave Travland and Bruce Ritchie
Originally broadcast August 10, 2010.
Family Caregivers and Fetal Alcohol Spectrum Disorder
Teresa Kellerman and Bruce Ritchie
Originally broadcast April 13, 2010.
Money Management of Disability Funds
This is a reply to a discussion on the FASlink Discussion Forum
My son (now age 23) was diagnosed with FAS as an infant with a long menu of issues. He was part of the Infant Parent Program at Chedoke Hospital in Hamilton until age 2. At age 2, we obtained Special Services at Home (after a battle) and he had a worker come to the house 15 hours/week (9 AM until noon) until he started Grade 1 full time. In JK and SK he had Special Education supports as well as throughout elementary and high school. He was in a regular classroom throughout. He graduated high school as an Ontario Scholar with the Principal's Gold Honour Award. He did a full Grade 12 and then returned to Grade 12 to add more courses of interest in a second year. The end results justify the monumental battles we had with bureaucracies to get the supports to which he was entitled. It was as tough as any business I have owned and operated. The extra year in Grade 12 also helped with his maturation process.
He continued his education, first as an online student at Athabasca University and then as a 60% full time student at Lambton College. 60% course load qualifies as a full time for a student with disabilities. At age 18, David gave me full Power of Attorney. It has been critical in helping to manage his life. In Ontario, he qualified for Assistance for Children with Severe Disabilities (formerly the Handicapped Children's Benefit) until age 18. That was for a maximum $435/month. At age 18 (about 60 days before his 18th birthday) we applied for ODSP, the Ontario Disability Support Program and he qualified for the full amount, just over $1,000/month. He has his own apartment with lease but I entirely manage his funds. He does receive an allowance weekly and can earn additional funds. As long as he is classed as a full time student, what he earns is not deducted from his ODSP.
We often grocery shop together, but that is a huge challenge as impulse buying is still a problem. He does have good survival skills as we have camped since his childhood. When school was out for the summer, he accompanied me on the Great FASD Horseback Ride and Trek across Canada in 2007 (Sarnia, ON to Victoria, BC portion). It was an incredible experience for him.
As a student with permanent disabilities, he qualifies for the Canada Studies Grant and the Bursary for Students with Permanent Disabilities. All available grants are automatically considered by OSAP (Ontario Student Assistance Program) for students attending full time (60%+) in a post secondary education program (college, university, and trades programs). The funds are entirely in grants, not loans. They only become loans if he withdraws from a course part way through. To stay as a grant, he has to pass or fail, not quit. He has Spec Ed supports, particularly a quiet environment and extra time for exams. He would never be able to navigate all the forms and battles required for ODSP, college application, financial supports, etc. on his own, and he knows it. He doesn't want the aggravation. That is my job.
He has been taking targeted courses that will help him to become self-employed in the future - English, Accounting, Math, Psychology, Marketing, etc. His "choices" with my strong influence. I take care of his car insurance as an occasional driver on my van and his grandmother's car. That is far less expensive than stand-alone insurance for a single male under age 25. When he wants to go to a special event, such as Fan Expo in Toronto, he has a small group of highly reliable friends to travel with and I arrange the tickets, travel, hotel, food, spending money, etc.
Last Fall, we started the Artists Co-op and rented a store front in the Cultural District in downtown Sarnia. It is a practical lesson in starting and operating a small business. I have been an entrepreneur for more than 40 years. It has been an excellent experience for him as well as a challenge for me as we have locked horns frequently in the process, as normal. In spite of having an excellent group of outstanding artists, sales did not justified the overhead and we closed the store. Again, an excellent practical lesson. He has been involved every step of the way. In the words of Kenny Rogers' "The Gambler", "You have to know when to hold 'em and know when to fold 'em, know when to walk away, and know when to run." We have re-focused in another location and continue to serve our customers.
He is learning how to sell and imprint images on T-shirts, ceramic coffee mugs, water bottles, and sheet aluminum (plaques, awards, certificates, portraits, signage, etc.) A key benefit has been his interactions with customers and local businesses, in an environment where "the boss", me, won't fire him for the odd screw-up. He will learn as an adult he can make mistakes, take ownership of them, learn from them, and deal with the consequences, without the world falling apart. He is getting a crash course in small business, something no school can give. Hopefully, the lessons will be positive and stay with him for a lifetime.
He loves to feel he is independent, but wants me to sweat the details. :-) Working together has its challenges, but they are well worthwhile. I am age 69 now and will not live forever. I will probably retire when they stuff me in an urn. I only have a short time to pass on what I have learned in 40+ years of running organizations.
We have developed a different adult/adult relationship that still has vestiges of parent/young adult. I treat him with respect, but I am the elder and know where the landmines are planted and how things work. I can help him avoid those landmines. He should make his own mistakes, not repeat mine. So far, it is working.
When he really gets obnoxious and unrealistic about money, I offer to turn everything over to him, including managing the challenges of ODSP, college, car insurance and repairs and maintenance, leases, etc. We go over the budget costs of the standard of living and benefits he currently enjoys with the realities of fully managing his own life. That has a very sobering effect. He has taken accounting at college and the math shows the standard of living on ODSP really sucks. Without cost and affecting his ODSP, he has free access to resources that might otherwise be unavailable. It is a delicate balancing act. The trick is learning how to squeeze a nickel until the beaver poops. I can only hope I can keep up with the challenges and keep the lines of communication open.
FASD and Academic Achievement
Early diagnosis and intensive, appropriate intervention can make an enormous difference in the prognosis for children with FASD.
Here are some thoughts about my journey with David over the 21 years since his birth. More.....
The Faces of Hidden Fetal Alcohol Spectrum Disorders (FASD)
Margaret Sprenger and Bruce Ritchie received the St. Michael's Hospital "Award for Pioneer Work in the Area of Fetal Alcohol Spectrum Disorders".
Click to enlarge
Mary Cunningham, Ernie Parsons MPP, Margaret Sprenger, Bruce Ritchie
"St. Michael's Hospital, Fetal Alcohol Spectrum Disorder Clinic is pleased to support the work of FASlink. St. Michael's FASD Clinic views FASlink as an essential service for our clients. We are fortunate to partner with FASlink in our attempt to improve the lives of individuals and their families with FASD. Dr. Brenda Stade, St. Michael's FASD Clinic" St. Michael's Hospital is a teaching hospital affiliated with The University of Toronto.
FASD Diagnostic Clinic - Booking Office: (416) 867-3655
Break a raw egg (without breaking the yolk) into a clear glass. Add a 1 ounce shot glass of alcohol. With a swizzle stick, gently stir some of the alcohol into the egg white. Watch the effects on the egg white. White streaks will form in the clear portion. Alcohol literally cooks the cells. “Here is your baby's brain on alcohol”
Some ideas for effective interventions to reduce health problems related to prenatal alcohol consumption:
Teach physicians and other health professionals to screen, diagnose and
treat FASD. Every pediatrician and GP should be able to credibly diagnose FASD.
Fully fund diagnosis. Currently can cost the family $2,500, inhibiting
diagnosis and effective intervention in financially compromised families.
Recognize and deal with the continuum, not just the extremes of FASD.
Children without the full physical features of FAS can be more severely
compromised and at higher risk of secondary disabilities.
Actively screen for alcohol use in all patients and give advice. Alcohol
dipstick testing should be automatic in a regular physical exam where clinical
test strips, such as N-Multistix, would also be used. Physicians are charged
with maintaining the health of patients and as only about 20% of adult patients
do not drink beverage alcohol and alcohol is implicated in more than 60
different disease conditions, it is logical that it be part of the screening
process, whether or not it is a legal drug.
Recognize medical issues of alcohol and all personal, family and societal
Folic acid should be added to all beverage alcohol. See Dr. Bushan Kapur's
studies on blocking ethanol/methanol brain damage during gestation.
Identify women at risk of having children with FASD and intervene.
Meconium testing for Fatty Acid Ethyl Esters should be mandatory for every
birth. It can detect and quantify alcohol consumed in the final 20 weeks of
gestation. Confirmed maternal use of alcohol during pregnancy is critical for
future diagnosis of FASD in the child and MUST be part of the permanent medical
record of the child. It is a human right for the child and takes priority over
the ego of the parents.
Break the cycle. Properly fund addiction intervention and rehabilitation
programs. Treat the entire family to help prevent relapse. Intensive family and
social service supports for FASD and recovering alcoholics.
Poverty is a result of, and breeds, substance abuse. Deal with it.
The beverage alcohol industry pays less than 1% of the total damages caused
by their products. It is the only area of pubic injury in which the source is
not forced to bear the cost. Increase taxes on beverage alcohol.
All tax revenue to be returned to support rehabilitation programs and
victims of alcohol.
Remove all incentives for governments to promote beverage alcohol.
End all government supports for the beverage alcohol industry, including
"wine and beer tourism".
End all alcohol advertising.
Alcohol must be served with food.
Require public access single use breathalyzers in all alcohol establishments
so at a minimum patrons can test their BAL before driving.
Ban alcohol sales incentives, contests, games.
Ban "Happy Hour" discounted promotions. They encourage binge drinking.
Educate the public that addiction is a medical issue not a moral failure.
Educate children from a very young age about dangers of alcohol.
Have youth design anti-alcohol programs targeting youth.
Better diagnostic tools for the full range of FASD damage.
True incidence and scaling of FASD damage.
Chemically turn-off addiction center in brain.
"Formic Acid in the Drinking Patient and the Expectant Mother" by Dr. Bhushan Kapur.
Methanol in small amounts is present along with ethanol in beverage alcohol. The body's natural enzymes preferentially metabolize ethanol while methanol breaks down into highly neurotoxic Formic Acid. Formic Acid is best known in the venom of bee and ant stings.
Use of high levels of Folic Acid was found to inhibit brain damage caused by the methanol.
The use of Folic Acid during pregnancy has been recommended for several years to prevent neural tube defects. However, this study indicates that even higher levels of Folic Acid can be very beneficial to the developing baby, particularly where alcohol exposure is a factor. Since 1997, Folic Acid has been mandated as an additive to all flour sold in Canada. The debate has begun on its required addition to all beverage alcohol to help mitigate damage caused to both infants and adults.
Screening for prenatal alcohol exposure.
Meconium is the first fecal excretion from the newborn baby. MecStatSM EtOH is a test of the non-oxidative metabolites of Ethyl Alcohol called Fatty Acid Ethyl Esters (FAEE’s). These metabolites are the chemical combination for endogenous fatty acids present in the blood of a fetus and Ethyl Alcohol. These new compounds, which only form when the fetus is exposed to Ethyl Alcohol, are deposited into the fetus’s meconium and can then be detected and quantified from the newborn’s meconium after delivery. The amount of the Fatty Acid Ethyl Esters found in the meconium is representative of the amount of Ethyl Alcohol the fetus was exposed to during the last half of the pregnancy.
Studies by United States Drug Testing Laboratories (USDTL) and its dba MecStat Laboratories using the MecStat-ETOH meconium testing for FAEE's have shown 15% to 18% of newborns have been exposed to significant levels of alcohol in the final 20 weeks with 4% having been exposed to very high levels of alcohol. This test has become the de facto standard for laboratory diagnosis of fetal alcohol exposure and is in routine use all over the United States and Canada. Courts have held that MecStatSM EtOH tests meet both the Fry and Daubert standards and the results are admissible in adversarial proceedings.
A confirmation study: "Neonatal Screening for Prenatal Alcohol Exposure - The Grey Bruce Study" by Joey Gareri, HBSc, MSc student was presented at the St. Michael's Hospital 2005 FASD Conference. The FAEE study, found a high level of exposure in 4% of newborns.
Why test for fetal alcohol exposure when there is no treatment available?
There are several reasons why diagnosis of alcohol exposure is important. As with any disease, early diagnosis provides for many more options and treatments than detection at an advanced stage.
a. Early diagnosis of fetal alcohol syndrome (FAS) and fetal alcohol effect (FAE) allow newborns to be identified and enrolled into early intervention and treatment programs. New programs are showing dramatic improvements in children identified earlier in life.
b. Detection of an alcohol affected child can allow help, intervention and treatment to be offered to the mother, so that future FAS and FAE children may be prevented.
c. When cocaine and opiate exposed newborns were first detected, there was no treatment. As programs, understanding and treatments improve, diagnosis at a very early stage can only help the outcome of the child, mother and family.
Meconium testing should be part of the standard testing protocol for all newborns. "Results of meconium tests offer a unique opportunity to record gestational exposure to ethanol. Missing this opportunity can leave many children impaired by alcohol at risk of being undiagnosed: evidence of maternal drinking is a prerequisite for diagnosis of fetal alcohol spectrum disorder in cases where pathognomonic facial features are not apparent."
The child has the right to honest diagnostic information that has not been corrupted by ego, social stigma or threats by the medical profession's insurance agencies.
"People may not see FASD when they look at my son's face, but I see it. I see it in the way his eyes flash in anger when he is frustrated and I see it in the tears that pour down his face when he is trying so hard to understand his math problems. I see it in his blank stare when he shuts down after working so hard in school all day, a place that has labeled him as lazy and defiant, and I see it in his silly smile when he is being impulsive or inappropriately friendly with strangers.
"FASD is also visible on my face and on the faces of other moms and dads...it is spelled out in worry lines. For some it is in the tears that flow in overwhelming grief. These are the facial features of FASD that do not appear on the FAS diagrams. FASD is often called the invisible disability, but I see it everywhere I look...and it doesn't go away just because I close my eyes."
Kari Fletcher, Adoptive Mom to 2 children with FAS and advocate/trainer at MOFAS, the Minnesota Organization on Fetal Alcohol Syndrome
|"FAS represents the largest environmental cause of behavioral teratogenesis yet discovered and, perhaps, the largest single environmental cause that will ever be discovered." -Riley, E. P., and Vorhees, C. V. (1986). Handbook of Behavioral Teratology. Plenum Press, New York, NY\
|"Of all the substances of abuse, including heroin, cocaine, and marijuana, alcohol produces by far the most serious neurobehavioral effects in the fetus." -Institute of Medicine 1996 Report to Congress
|"Alcoholism should not be judged as a problem of will power, misconduct, or any other unscientific diagnosis. The problem must be accepted for what it is - a biopsychosocial disease with a strong genetic influence, obvious signs and symptoms, a natural progression and a fatal outcome if not treated". Thomas R. Hobbs PhD MD - Physician's News Digest of Feb. 1998
|The World Health Organization's "WHO Global Status Report on Alcohol 2004 - Health effects and global burden of disease" states, "Alcohol use is related to wide range of physical, mental and social harms. Most health professionals agree that alcohol affects practically every organ in the human body. Alcohol consumption was linked to more than 60 disease conditions. In the developed countries, 9.2% of all the disease burden is attributable to alcohol, only exceeded by the burden attributable to tobacco and blood pressure."
Financial security, succession planning
One of the greatest concerns for parents of children with any disabilities is "What happens after I die?" "Who will look after my disabled adult child for his/her lifetime?" "How can I preserve my few remaining assets so my child can benefit and governments won't relegate them to abject poverty or life on the streets?"
For example in Ontario, ODSP is not available until the disabled individual's assets drop below $5,000 and then the maximum ODSP payment is $12,480 per year. That is reduced by 24% if the disabled individual lives with a family member. So if there are any family assets inherited, they have to be completely used up before the disabled individual is entitled to any government support, far below the poverty line. This, of course, is very distressing to the parents who have spent a lifetime trying to protect their child.
These concerns place tremendous emotional pressure on our families. Disabilities mean high needs dependents and often mean one parent must drop out of the work force, perhaps losing $30,000 to $60,000 or more annually from the family resources.
Disabilities also cause enormous stress on marriages and lead to marital breakdown and single parenthood with its attendant heightened emotional and financial stresses. In Ontario 85% of support orders are in default. If you can't support one household on the available income, how can you support two? Disabilities often mean complete destruction of the family finances, no retirement pension, stress-related / distress-related physical and mental illnesses of the caregiver and the dependent.
When the parents are going through excessive stress, that can reflect back on the child and amplify the child's problems. For example, it can be highly stressful to have to battle bureaucrats to obtain the services to which your child is entitled. It is even a struggle to find out what services are available. They tend to be well kept secrets.