192 Sandpiper Drive
Canada N7S 0G1
Phone: (519) 331-6408
you drink, baby drinks too.
FASlink around the world.
CCSA - Canadian Database of FASD Resources
NOFAS - National & State FASD Resource
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
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
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".
submission to WHO survey on health problems
related to alcohol consumption.
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.
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
the FASlink Discussions.(.....more)
"Kalee" by SanGia
Family Caregivers Unite!
with host Dr. Gordon Atherley and
Young adults, Mental Health
and the Justice System
Aired September 27, 2011
about the advice thatís given to family caregivers
Dr. Dave Travland
and Bruce Ritchie
Originally broadcast August 10, 2010.
Caregivers and Fetal Alcohol Spectrum Disorder
Teresa Kellerman and Bruce Ritchie
Originally broadcast April 13, 2010.
Money Management of Disability
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
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
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
and intensive, appropriate intervention can make an
enormous difference in the prognosis for children with
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
Ritchie received the St. Michael's Hospital
"Award for Pioneer Work in the Area of Fetal Alcohol
Mary Cunningham, Ernie Parsons MPP, Margaret
Sprenger, Bruce Ritchie
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
FASD Diagnostic Clinic - Booking Office: (416) 867-3655
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.
ďHere is your baby's brain on
Some ideas for
effective interventions to reduce health
problems related to prenatal alcohol
Teach physicians and
other health professionals to screen, diagnose
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
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
Folic acid should be
added to all beverage alcohol. See Dr. Bushan
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
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
programs. Treat the entire family to help
prevent relapse. Intensive family and
social service supports for FASD and
Poverty is a result
of, and breeds, substance abuse. Deal with it.
The beverage alcohol
industry pays less than 1% of the total
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
All tax revenue to be
returned to support rehabilitation programs
victims of alcohol.
Remove all incentives
for governments to promote beverage alcohol.
End all government
supports for the beverage alcohol industry,
"wine and beer tourism".
End all alcohol
Alcohol must be served
Require public access
single use breathalyzers in all alcohol
so at a minimum patrons can test their BAL
Ban alcohol sales
incentives, contests, games.
Ban "Happy Hour"
discounted promotions. They encourage binge
Educate the public
that addiction is a medical issue not a moral
Educate children from
a very young age about dangers of alcohol.
Have youth design
anti-alcohol programs targeting youth.
tools for the full range of FASD damage.
True incidence and
scaling of FASD damage.
addiction center in brain.
Acid in the Drinking Patient and the
Expectant Mother" by Dr. Bhushan
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.
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
Screening for prenatal alcohol
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
(FAEEís). 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 fetusís meconium
and can then be detected and
quantified from the newbornís 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
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.
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.
test for fetal alcohol exposure when
there is no treatment available?
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.
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
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
"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
"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."
Adoptive Mom to 2 children
with FAS and
advocate/trainer at MOFAS,
the Minnesota Organization
on Fetal Alcohol Syndrome
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
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
|The World Health
Global Status Report on
Alcohol 2004 - Health
effects and global burden of
"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."
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
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