FASD and Academic Achievement
letter was originally sent to the members of the FASlink Discussion
Forum in January 2010.
My son, David, graduated from high school as an Ontario Scholar
(minimum requirement of 6 university preparatory courses with
over 80% average in each) and the Principal's Gold Honour
Award (minimum of 6 university preparatory courses with over
85% average in each). We were all shocked by the awards, including
David, and absolutely delighted.
He is now studying through Athabasca University (Edmonton,
Alberta) online, living at home in Bright's Grove, Ontario.
Here are some thoughts about my journey with David over the
20 years since his birth.
When he was first diagnosed with Fetal Alcohol Syndrome (FAS)
shortly after birth, the future looked bleak and incredibly
challenging. David's birth mother, my wife, a family physician,
was addicted to alcohol and prescription drugs. During the
pregnancy she was involuntarily committed five times for treatment
under the Mental Health Act.
David had microcephaly, short palpebral fissures, flat mid-face,
short nose, thin upper lip, flat philtrum, frequent micro-seizures,
night terrors, failure to thrive, poor suck reflex, poor tongue
control, was at 3 percentile in weight and 5 percentile in
height. He had sensory integration issues with hyper-sensitivity
to food taste and texture as well as hyper-sensitivity to
small pain (slivers, small cuts) and dangerously high tolerance
for major pain. He has extremely acute hearing (his MP3 player
is at a volume of 1 out of 10). He can hear a whispered conversation
from a long distance. He cannot tolerate a noisy environment
As an infant and toddler, he was developmentally delayed,
had no short-term memory, and had attention deficit hyperactivity
disorder (ADHD). At age 2, he was 6 months delayed in almost
every "category". The list goes on and on. His pediatrician
would not start a child on meds until after age 6. In David's
case he knew he had to make an exception. David started on
Ritalin at age 2 1/2 and changed to Dexedrine short-acting
tabs at age 3. He now takes Dexedrine occasionally, only as
When David was 4 months old, it had become so dangerous at
home that I packed him up and moved. I later remarried. David's
birth mother was never able to beat her addictions. They eventually
killed her. It was a tragic loss.
While my son may have been born holding the short end of
the stick, I was determined that nothing else would be allowed
to disable him further. In 1991, I became a founding Director
of The Fetal Alcohol Support Network which grew and evolved
into FASlink Fetal Alcohol Disorders Society. Many other FASD
support groups had their origin in FASN.
Here are some ideas that seem to have worked.
1. Psalm 23, subsection 4b. "Yea though I walk through
the valley of the shadow of death, I will fear no evil, for
I am the meanest SOB in the valley."
children have disabilities, but their biggest handicaps
are the battles we have to fight to get the services to
which they are entitled.
the services and funding required for our children are controlled
by politicians and bureaucrats. Their mandate is to provide
as little as possible to anyone and spend no money on things
that don't tickle their fancy, or get votes. Every support
is hidden or blocked and if you find out about them, there
is an immense minefield to cross (no map) to squeeze out
the minimum. Our children don't vote and families raising
children with severe disabilities have an 85% probability
of falling apart, mine included, with the child being raised
by a single parent, who will have severe financial challenges.
Most poor folks don't vote and are consequently ignored.
Lip service is paid to the issues, but only lip service,
example, the federal government designated $15 million for
FASD over 3 years. Not a penny of it got to the grass roots
where the real work is being done. All of it was sucked
dry by the existing bureaucracy by renaming existing non-FASD
programs or creating short term projects that promptly died
when the funds ended.
example is FASlink. We provide information, support, research
and communications about FASD for more than 400,000 people
annually. Our website resources provide more than 130,000
FASD related documents, free. FASlink does not receive a
penny of government funding. We are politically annoying.
Truth can be politically uncomfortable.
are your child's advocate. You have to become tougher than
you ever believed you could be. You must seize the high
ground and constantly fight for your child's survival, not
just for today, but also for the time when you will be too
old, too feeble or too dead to protect them.
you need to know about:
the Infant Parent Program to age 2
Special Services at Home
Assistance for Children with Severe Disabilities (ACSD)
Ontario Disability Support Program (ODSP) (age 18+)
for post secondary education, you need to know about online
learning programs (college and university) and
Bursary for Students with Disabilities and
Student Grant for Services and Equipment for Persons
with Permanent Disabilities .
study and learn the "Accessibility for Ontarians
with Disabilities Act". It is a critical ally in
2. Learn everything you can about FASD.
the articles on the FASlink website at www.faslink.org
a local FASD support group.
FASlink online, particularly the Discussion Forum. Actively
participate. This is a huge resource for support, ideas
and research. These are the real people who deal with FASD
daily, not academicians whose only contact is in an office
or through course work. These are the people who navigate
prepared to teach about FASD to your family, friends, physicians,
teachers and everyone who has influence on your child's
future. You have a HUGE education project to do.
that the most prevalent disease in the human species is
MD, Massive Denial. It ranges from the refusal to see the
elephant in the livingroom to the brick wall surrounding
the support services you will need for your child.
children learn differently, at their own pace.
don't fit a cookie cutter system, although I wonder how
many children really do. While we may not be able to "cure"
prenatal alcohol related disabilities, there are things
that seem to help dramatically. The key is to develop coping
strategies and work-arounds. I don't have wings to fly but
I can drive.
be uptight about scheduled milestones. Our kids don't do
abstract. Time is abstract. They will always be late because
time has no meaning to them. Live with it. Find work-arounds.
They don't like watches. They are uncomfortable. Cell phones
have clocks and can schedule alarms. For younger kids who
remain close to home, FRS radios are a cheap alternative
- an electronic leash.
all abstract concepts to concrete, hands-on learning. Our
kids can learn, but they learn differently.
your child on a computer as soon as s/he can hold the mouse.
children with ADHD, the computer screen is the size of the
world they can handle. They can focus on 18" but not
on 360 degrees around them. The game sounds can help block
out distractions. Many computer games are both educational
and fun. Let them play. Computer games are repetitious,
colourful, and much more patient than humans. Your child
will develop fine motor skills, strategy, planning and the
concepts of success. They will learn to buy, sell, negotiate,
co-operate, play in teams (guilds) and compete.
kids can have difficulty making and sustaining friends,
often because their behaviour can be odd or at a maturity
level different from their chronological age. Online gaming
(teens+) lets them communicate with people at their own
maturity level. Parental supervision and guidance is important
to protect them from predators. There are also predators
on your neighbourhood streets, so parental guidance and
supervision is always wise. Stay involved. No excuses.
Beacon Teaches Typing is a great keyboarding program and
fun to learn. David now types about 80 words per minute,
much faster than I can. The constant brain stimulation will
help develop neural pathways. Repetition will help make
those pathways permanent.
fine motor skills were very poor and his handwriting terribly
slow and illegible. We bought an AlphaSmart keyboard that
he used throughout elementary and high school. The AlphaSMart
has a 6 line LCD screen and 8 memory folders. It will run
for a month or two on 4 AA batteries. It saves every keystroke
continually. Each subject had its own folder. At night,
I would download the files onto my computer, print, punch
and add them to his binder. This helped me keep up to date
and gave him a hard copy of his notes. The downloads were
saved to an Asksam free-form database. I would then clear
the AlphaSmart folders. The AlphaSmart also has spellcheck
which continually improved his spelling. His exams were
done on computer. We still use the AlphaSmart to communicate
with my deaf sister.
your child to read using the computer game instructions and
NOT LEARN TO READ BY ROTE. Phonetics let the child learn
word structure and meaning. Reading game instructions and
rules means they get to play the games and succeed. Motivation
-> learning. Reading becomes incredibly rewarding. David
began on the computer before age 2.
use the knee jerk reaction of many parents by seriously limiting
access to the computer.
may control access to some types of games and websites,
but they will have access at their friends' homes. Better
to teach them about respect for themselves and others and
what is appropriate and what is hurting and exploiting others.
Teach them not to be victims or victimize anyone else.
them read what interests them.
love adventure tales, magic, dragons, wizards, "choose-your-own-adventure"
books, etc. Books are usually chosen by women using a female
brain. Those may work for girls. Boy brains think differently
and books that interest girls often have little interest
for boys. That is not sexist. It is fact. Live with it.
when he was very young, I had trouble getting David to go
to sleep. He wanted to read. He would hide under his blanket
with a flashlight just to read his books. He can even easily
read upside down, a good thing for spies, diplomats and
sales. Career direction? Reading has given him worlds of
"socialization" when he was not accepted by his
is a hard and fast rule in my household. Our children are
in school 6 hours per day, 5 days per week. They must have
a life outside school. If they want to read for interest
about something that they are learning in school, that is
not a problem, nor is it homework. They need time to play
and develop their own interests. Organized sports are vastly
over-used and over-rated.
is logical and mathematical as well as abstract and sensory.
It works both sides of the brain. Children are natural musicians.
They can sing songs long before they can read music. In
fact some of our greatest musicians can't read music. Playing
an instrument is simply learning a set of skills through
basic instruction and playing. They already know how to
feel and create music. Encourage it. Don't kill it. Lessons
are very helpful, if they are not rigidly theoretical and
if they use the music that has meaning to the child. I am
a Director of the International Symphony Orchestra and often
take David to concerts. He took music courses in high school
(trumpet and flute - his choice) and I taught him to play
keyboards, piano, organ and guitar. However, the music he
plays is rarely classical but is often show tunes, such
as from Phantom of the Opera. He loves music, with the exception
of migraine music, nasal country, and punk. His hearing
is too sensitive for brainblasters.
playing (no practice - practice is work, playing is fun)
but not on a rigid schedule. Positive flexibility is good.
kids have trouble making and keeping friends, often because
their maturity level is younger than their chronological
age. Scouting provides group activities where friends are
made, adventures are enjoyed and very practical skills are
learned in a fun environment. Those skills will last a lifetime.
When David joined Cubs and then Scouts, I joined as a Scouter.
Scouting had also been part of my youth when
I earned the Queen's Scout award with Gold Chord and Bushman's
Thong. That only means something to other scouts. Needless
to say, Scouting has been a wonderful, positive influence
on both David and me. It has also influenced his career
direction toward a non-office oriented profession, such
as naturalist photographer.
11. School Council
we have School Councils that provide advice to the Principal
and the Board of Education. The majority of members are
parents. They are distinct from School Parent Associations
that fundraise. Join the School Council. Be involved in
your child's school. My job is to help both my child and
the teachers have the best possible experience at school.
The teachers know I will do whatever is possible to help
make their job easier and I expect them to understand that
I know my child better than anyone. I know how he thinks,
learns, reacts, succeeds and fails. I know his strengths
and weaknesses. Therefore, I can help make life easier by
coaching the teacher on how to get the most from my child
while both are having fun. Again on the homework issue,
no homework. If work has to be done, it must be done at
school. David must have a balanced life out of school too.
And I occasionally have had to point out that I have a son
who LOVES SCHOOL. Don't screw it up. I am very accommodating
and helpful, but Psalm 23, sub 4b (above) always lurks in
the background. As a result, David's teachers always loved
him, were delighted with his enthusiasm and often floored
by his questions.
should be a happy, fun experience. Everyone learns better
when they are having fun. Any teacher who doesn't live and
breathe that philosophy is in the wrong profession.
was always the peacemaker and would not tolerate bullying.
He is a lover, not a fighter. He was bullied at one school,
until he pinned the bully to a tree and thumped him. The
bullying ended. He paid attention to all the anti-bullying
sessions at school and the students stuck together to prevent
become your friends. Good company enhances growth. Bad company
is a road to disaster. David has a small core of good friends;
three are particularly close. They spend a lot of time at
each others' houses. I know the parents. All are good kids
with a good, stay-out-of-trouble attitude. They are polite,
respectful and ambitious. One, Casey, joined us on the Great
FASD Horseback Ride and Trek Across Canada. David does have
many online friends and enjoys online gaming. He is also
shy until he gets to know someone. He has joined the Celebration
Singers, a group at our church (mostly adults) who sing
at various events.
opportunity to grow.
child is different. But what is consistent is that your
child has given you the greatest opportunity you have ever
had in your life. You are their best hope for survival and
a successful future. You have a very few years (we are all
mortal) in which to change your world. You will develop
strength you never knew you had. You will never again take
anything for granted. You will be pushed to what you think
is your limit, and yet you will develop the courage to carry
on to even further limits. And you will do it again, and
again. You will not only shape your child and yourself,
you will also shape everyone who comes into contact with
either or both of you. And at the closing curtain, you will
be able to look back on a life well lived and a child who
has a good shot at succeeding at life. Be grateful to your
Be patient. Be forgiving. Be understanding. Cut them lots
of slack. There are times for gentle guidance and times
for Drill Sergeant restraints. Learn when to use both and
have the courage to do so.
the courage to stand up against those who would harm your
child directly or by denying supports or services. Have
the courage to stand up against your child's unreasonable
demands. Every child tests the boundaries, continually.
That is how they learn and grow. Be prepared to expand the
boundaries as they can handle new challenges. History is
rarely made by well behaved people. Understand that nobody
walks on water, including you. We are all constantly learning
on this journey and we will all mess up regularly. Accept
it and move on. Never, ever quit.
must provide the environment in which your child can grow.
They must do the work of growing and be recognized for their
successes. They deal with enough negatives in their life.
Don't be one of the negatives. Be encouraging and accepting
for who they are. Do not be demanding. Being demanding sets
them up for failure.
as happy as we decide to be. People grow and achieve when
they are positive and are encouraged. Teach that for every
pile of horse manure they step in, there is a horse for
them to ride. When life serves you a lemon, make lemonade.
2448 Hamilton Road
Bright's Grove, Ontario N0N 1C0
Phone: (519) 869-8026