| From:
"Teresa Kellerman" <tjk@azstarnet.com>
It
provides a network of support so wide that when I am faced
with a seemingly unique problem in dealing with FASD that
doesn't seem to have any answers, I invariably will find
at least one other family on Faslink with a viable suggestion,
and usually I receive many helpful responses.
It
provides me with ideas on dealing with children, schools,
and community professionals that I might not have thought
of myself. There is a rich field of perspectives and experience
that brings new ideas to creative problem solving.
It
provides a network of support for families who live in
rural areas, who believe they are all alone with their
struggles. Since I have a web site that offers resources
to families, I get many requests from people asking if
I know of anyone in their locale. I usually don't, but
I can certainly find out, just by posting on Faslink,
with a connection made within hours, that can make all
the difference to the isolated family, offering them hope
and support.
It
provides me with learning experience from the adults with
FAS and FAE who post on Faslink, insights that help me
in raising my child with understanding and compassion.
It
is my Family, who understands and accepts my children's
problems, my desperation, my frustration and anger, who
offer a shoulder to cry on, suggestions to make life better
for me and my family, and encouragement to carry on when
the burden becomes too heavy.
It
is only on Faslink that I find my peers. Because of Faslink,
I know I am not alone, that my battles are not lost causes,
that there is hope for my child's future.
Teresa
in Tucson, AZ - mother to John (FAS)
Come on over to... http://come-over.to/FAS
From:
Ron Jorgenson <ronpenn@island.net>
I
am a Special Education Resource Teacher in Port Alberni
on Vancouver Island. Faslink has been an invaluable service
in expanding my understanding and grasp of the situation
for children with FASD, families and the community. In
the last 25 years as an educator, I have had lots of information
shuttled my way. In that time I have met few resources
that had as much practical information, insight into the
impact on families and have helped to reframe my perspective
on a subject as this site has.
This
site and those who access it have influenced the manner
in which I work to support children with FASD in our schools.
More importantly it has helped me to see FASD as a community
problem. Information and materials accessed from this
site have enriched our school district and support to
teachers, families and most importantly children.
This
is a worthwhile and valuable service to the communities
across North America who have fewer accesses than even
we do here on the West Coast of Vancouver Island. Thanks
go to those with vision to see the possibilities in such
a site. Be part of a vision. The opportunity to continue
this resource under the capable direction of Bruce Ritchie
is a gift deserving of support.
Ron
Jorgenson
From:
HARGRLIN@aol.com
I
joined FASlink about 18 months ago. The parental experience
and knowledge is astronomical. There has been significant
help in the areas of emotional levels of FASD kids, IEPs,
schooling, discipline (and lack of awareness of it), major
pschiatric problems, major deficiencies, muscle tone and
strength and parenting. I consider this to be my main
support group with
continuous
availability of members. My son Andy is 8 years old with
FAS and ADHD. He will probably never live independently
- however he is one of the sweetest kids I have ever known.
He loves music and can't do math, loves dancing and singing
and can't write his name legibably. He loves people and
has the strong chance of being taken advantage of. I need
this group to help y son become the best that he can be.
Thank
you,
Linda
Hargreaves
Hargrlin@aol.com
From:
"Judy Sutton" <jmsutton@sprint.ca>
Until
I joined the Faslink family, I was struggling on my own,
raising a FASD child. This is the second child I was raising
with this totally preventable disability.
Faslink
welcomed me, answered any and all questions I posted to
the link, and for me, finally having someone who understood
that when I said my daughter had tantrums, were there
to support me and build me up when professionals didn't
believe that her tantrums were explosive and a threat
to her safety.
I
thank Bruce from the bottom of my heart to take on the
task of keeping FASlink alive for me and other parents
raising these children. We need the support of people/parents
living similar lives.
Thank-you
Judy
Sutton
Ottawa, Ontario, Canada
From:
Smlthings@aol.com
I
am the adoptive mother of three FASD children in Arizona.
For the last 14 years I've struggled to raise my kids
the best I could. The only information I had been able
to get was what caused FAS and some small amount of information
about how it may effect brain function. Other than that,
I was pretty much flying by the "seat of my pants."
Three months ago, I was given a computer. The first thing
I did was look up FAS on a search engine, and landed squarely
in the lap of FASLink. Suddenly, I had a wealth of information
and support from professionals, researchers, parents and
educators through conversation, links and experience.
I can't begin to tell you how this has changed the quality
of our lives. I've heard from parents all over the world
who have given me advise and support on how to deal with
everyday issues, medical problems, educational opportunities,
and behavior problems. I've been able to share my successes
and failures. Behaviors that were bewildering are now
recognizable. I've learned new approaches to everyday
struggles. I've joined an international organization aimed
at raising awareness and prevention of FASD. I've learned
how to access support services in the community. Finally,
after 14 years of struggle, I know that I AM NOT ALONE.
Please
consider supporting this invaluable resource that so many
families like my own depend on in their daily lives.
Thank
you for your attention,
Suzanne
M. Lucier
smlthings@aol.com
From:
Fasuk@aol.com
We
were up against a brick wall. We had been told that our
adopted daughter had Foetal Alcohol Syndrome, but in the
UK there was no information in the condition, nor support
for sufferers, parents, carers and teachers. We turned
to the internet. Whilst searching we came across faslink.
It was as if the flood gates to information had opened.
Before we knew it we were in conversation with professionals
and fellow parents who provided us with a wealth of invaluable
information and tips. We came to understand our daughter
Sinéad's condition and behaviour better. This has helped
us to deal with her and help her more effectively, as
well as explain her behaviour in a more appropriate way
to her brothers and sister so that they are able to relate
to her in a far more constructive way. She was well on
the way to destroying our family life, but now, thanks
to faslink, she enhances the quality of our family. We
have now set up a support charity here in the UK, to try
to provide the support services which we found so lacking.
We still rely tremendously on the support of our faslink
family. The information faslink has given us is now used
all over the UK to enhance the lives and education of
those affected by alcohol abuse in pregnancy. We, and
millions of others world-wide, need faslink to survive.
Bernard
& Jeanie Farrell-Roberts
From:
"Murrieta Creek" <mcrs@dconn.com>
I
am the guardian of a 21 year old young man with Fetal
Alcohol Effects (FAE). Rick has lived with me since the
age of four and he received his first tentative diagnosis
at the age of five. This diagnosis did not help me care
for Rick because I had almost no information about what
a diagnosis like that means. So I stumbled around making
many mistakes and causing terrible stress on Rick and
myself. Constant failure due to unrealistic expectations
has meant that Rick suffers from many of the secondary
disabilities that are very common in people with FASD
who are not properly diagnosed, treated and supported.
Secondary disabilities can include mental illness, expulsion,
criminal behavior, incarceration, deviant sexual behavior
and substance abuse. The cost to society in dollars is
nothing compared to the price paid in sheer human misery.
Obtaining information about FASD and emotional support
when coping with FASD is crucial to success and Faslink
is by far the best source of information and support I
have ever experienced. Like FASD, Faslink is there 24
hours a day, 7 days a week! Please help us preserve this
vital link. Thank you,
Eva
CarnerTemecula, California
(909)694-5534
mcrs@dconn.com
From:
"Pamela Thome"
Being
the parent of a child with FAS/FAE is the most challenging
and rewarding experience of my life. As a member of FASlink,
I have the opportunity to educate myself through the ideas
and experiences of other families who share the same challenges.
Most people cannot understand the unique problems that
children and families with FAS/FAE encounter. On FASlink
I have found a forum of understanding, information, suggestions
and support. Not only has this given me many options when
dealing with my son's problems but it also has given me
the ability and confidence to enlighten the educational
and medical professionals who work with my son. FASlink
is easy to access with a wide variety of knowledgeable
professionals who are willing to help with any problem
I might present to the group. This knowledge is priceless.
Pamela
Thome
Pamela
Joan Thome (Librizzi)
- January 8, 1959 - January 12, 2006 - Adopted mother
of Michael - of lung cancer. Pam was a long time member
of FASlink and was a major contributor to the discussions
with her humour, forthright commentary and passion for
life. She had adopted her husband's nephew, Michael, who
has FAS. Michael is now age 11 and doing well, primarily
thanks to Pam's incredible skill and dedication as a mother.
When she divorced, she gained sole custody of Michael
and has passed it on to her adult daughter, Angelique.
Angelique and her husband Marty will make excellent parents
for Michael in Pam's absence. Pam was an incredibly independent
woman and never let adversity slow her down, until now.
She had a zest for life, a passion for helping others,
and was an active member of the Society for Creative Anachronism,
taking Michael to events across the USA. She loved to
wear purple. It was her trademark, including dying her
hair purple for Angelique's wedding.
She
lived a varied and joyous life: beginning in a Polish
neighborhood in Chicago, traveling across the Midwest
on the dog show circuit and up and down the East Coast,
stamping her passport to see the Crown Jewels in London,
and making her home in a quiet neighborhood in Port Richey,
FL, while enjoying a creative and beautiful life as Her
Excellency Baroness Duva dea Pullea in a kingdom known
as Trimaris. Her resume lists many jobs, but first and
foremost was her dedication to her children, Michael (11)
and Angelique (28) of Port Richey. Also survived by a
brother, Larry (44) of Buffalo Grove, IL, and countless
people who called her "friend." Died after a
more than yearlong battle against cancer, but her humor,
love, and joie de vivre stay with us.
|
From:
PSOBA@aol.com My
husband is a Japanese national and I am a third generation
Japanese American. We are the uncle and aunt of three
children who have Fetal Alcohol Syndrome. Click
here for our story. These children are the natural
children of my husband's older brother and his wife and
they are our daughter's only first cousins.
We
first thought that our oldest niece might have Fetal Alcohol
Syndrome in 1992 when I found an article in the National
Geographic. I was devasted. In the beginning when we thought
our niece might have a mild case of Cerebral Palsy and
Infantile Spasms (a juvenile form of epilepsy), we could
accept the fact that many things happen to babies and
that this was an act of God. It is another thing to find
out that FASD is entirely preventable and to finally realize
that we had severe problems with drinking throughout both
sides of our family.
In
1996, I attended a Family Empowerment Conference in Wisconsin
and met a Canadian family who had raised a daughter with
FASD. I told them of the state organization on FASD information
that we and two other families were trying to start. And
I told them of the isolation of our family from all the
other families in our state. This separation was why we
had decided to start an information group rather than
a support group because we were so far apart. This family
suggested I join the FASLink, which was a listserv for
families dealing with FASD. It was a way to share information
and get support and encouragement, they assured me.
I
joined the Faslink the spring of 1996. My main objective
was to share the seven years of research and reading I
had done on FASD and other related topics. I have gotten
to do this but I also received a great deal more in the
way of support and encouragement, just as promised!
It
is very difficult to watch three FASD children grow up
without their parents having even the slightest inkling
of why their behavior is so strange. It is heartbreaking
to watch them being punished for things they cannot help
and even more painful knowing they are not getting the
special services that are so readily available in western
countries. On the days I have been so depressed and saddened,
the FASLink has proven to be a great and enduring source
of comfort.
It
is for this reason and the wonderful information that
is being passed on through the FASLink, that I have included
it in my information packets when I go to conferences.
I have given the FASLink address to a doctor in Shanghai,
the mental health department of the city of Hong Kong,
two researchers in Norway, a government worker in the
Republic of Ireland, the New Zealand FAS, and I will be
taking the address to Finland in the middle of May (1999).
I also pass on the informational and conference postings
(no personal letters are re-posted without permission
from the writer) to various FASD groups, researchers,
educators and families who may be interested.
The
FASLink is a temendously valuable resource for families,
researchers, and educators and by its very nature as a
listserve is fast becoming international in its scope.
From:
"Therese Bollerup" <MTB@ned.uscourts.gov>
FASlink
provides countless personal and professional benefits
to me both as a lawyer working in the United States court
system and as the parent of a thirteen-year old adopted
child with FAE.
For
our family, the information and support we derive from
FASlink is priceless. Families with FASD-afflicted children
are too often isolated and maligned because the children
create so many social, educational, emotional, spiritual,
financial, and health issues. FASlink is a refuge for
FASD families. We've all "been there, done that"
in our struggles, and we can encourage each other, educate
each other, ventilate with each other, and cry with each
other. In addition, because several of our members are
adults with FASD, we have resident experts to help us
understand how our children function and what difficulties
they will face as they mature.
FASlink
is also a professional resource for me. Almost on a daily
basis, I share items that I have found on the link with
the judge for whom I work, with medical professionals
of my acquaintance, with my spouse (a juvenile law lawyer),
and with professionals in other related disciplines. The
link gives us current research, digests past findings,
and suggests new areas to examine. In particular, my judge
has used research from the link in criminal cases when
attempting to fashion a just sentence for convicted individuals
with alcohol-related neurological disorders.
FASlink
will do very well in Bruce Ritchie's hands. He is the
parent of a child with FAS, and he is also an ardent supporter
of FASD causes not only in Canada but around the world.
The dedication he has shown in maintaining the FASlink
archives demonstrates the depth of his commitment to the
prevention and treatment of FASD as well as his masterful
technical abilities. His TRIUMF plans also establish that
he is an architect of hope for all FASD- afflicted children
and their families.
M.
Therese Bollerup
Attorney, United States District Court
P.O. Box 277
Omaha, NE 68101-0277
From:
"r.terry@ifad.org" <r.terry@ifad.org>
I
am an American living in Rome, Italy. Four years ago we
adopted two children from an orphanage in Russia. From
the very beginning I could tell there was something "different"
about my son. And even though we have spent much money
and time getting him tested, each time mentioning that
his birthmother was alcoholic, we could never get any
diagnosis beyond ADHD and possible Oppositional Defiance
Disorder. These so-called experts had lulled us into thinking
that my son was "normal" and had high potential,
that his developmental delays were just due to his institutionalization
for the first three years of his life. But things were
NOT getting better.
I
finally decided to do my own research on the Internet,
and as soon as I came across Fetal Alcohol Syndrome, I
finally knew what we were dealing with. It has been hard
to accept that my son has a permanent disability, but
at the same time I feel more focused, more able to plan,
advocate and deal with it. I have been able to offer more
information to his teachers which has helped in formulating
a more effective educational approach. He will still need
a medical diagnosis, but he matches so much of the criteria,
I believe it will be a proforma.
As
you can imagine, there is not much support here, for a
foreigner in a foreign country. If there are any doctors,
professionals or existing support groups, I do not have
the resources to ferret them out. I cannot begin to tell
you how important it has been to have discovered Faslink.
They
say knowledge is power; my whole family has been so empowered
by the knowledge that has been shared by the members of
the list. You can believe that it has made an enormous
difference in our lives, and, we had hoped, would continue
to do so.
You
can therefore imagine our distress and disappointment
at finding that the CCSA authorities are planning to discontinue
the list. I am writing to ask that you reconsider. Apart
from the emotional support that anyone can find there,
the factual and procedural information to be gained is
invaluable. The list sponsors and supports its every member,
be they young, old, male, female, FAS/FAE, or non, natural
or adoptive parents or relatives, rich, poor, layperson,
professional, Canadian, American or other nationality.
This is truly a unique and priceless service.
Faslink
has made a vast difference in the lives of so many. Knowing
that Faslink has been so instrumental in this should make
CCSA proud and encourage it to continue in these efforts,
rather than abandon such a necessary individual and community
service.
Thank
you for listening to a highly appreciative Faslink member
who, by the way, only joined a mere 6 weeks ago. We had
hoped to become not just a taker but a giver to the list
-- please allow us the opportunity to do so.
Roseanne
Terry
Ennio Elisei
(parents of Alex, a 7 1/2 year old kindergarten student)
From:
"Tom & Paula Kramer" <tkramer1@mediaone.net>
FASlink
has meant sanity in our world that is sometimes upside
down. Without the link, I wouldn't have been able to help
my sons (ages 5 & 6) thus far. I have gotten advice,
phone calls when I was sick, support through my sons recent
hospitalization in the psych-ward (tough putting a 6 year
old in). I couldn't have made it through the past 2 years
without it. Also info on meds, conferences & taking
anti-depressants myself.
Thanks
for it being here & thanks for you continuing it.
We are never alone with the link!!!!!!
Paula
Kramer
From:
aluna@zoomnet.net (The Armstrongs)
We
opened our home to foster children in August of 95. In
March of 97, we became the foster parents of three year
old twins, a boy and a girl, whose mother was hooked on
drugs and alcohol. Of course we didn't learn the full
scope of her addictions or it's effect on the children
until later. As we helped them overcome many of their
delays and learned more about the mom, we thought there
was a problem that went beyond neglect. We began to research
children who were exposed to drug and alcohol in the womb.
Despite the many commonalities in development, growth,
behavior, etc. we were unable to find a diagnosis or support
for a year and a half.
Since
that time, both children have been diagnosed with FAS
and scheduled for genetic testing (through a Children's
Hospital an hour and a half away). We found Faslink after
the diagnosis, but it has been wonderful to meet others
online who have been where we are. It has provided the
emotional and educational support that we have not found
locally. Through Faslink, we have been introduced to resource
materials we would not have found on our own. We are now
in the adoption process for the twins, and we are glad
to know that we have access to people who can help us
understand, cope, and work through and around the roadblocks
that alcohol has put in front of our children.
Kenda
and Alun Armstrong (Ohio)
aluna@zoomnet.net
From:
Bev Eastcott <gbkeastcott@mb.imag.net>
I
am a new member to the FASLINK family, as I only got my
computer connected to the Internet in January 99. However
I have been getting information from my friend Val Surbey
since she decided to get help for other families needing
support on FASD. So to say the least I have been helped
by "faslink" since it started. Now with my own
computer and printer I continue from where Val started
me -educating my other friends, foster parents, teachers
and anyone with an ear to listen. I continue to get valuable
information to help me raise my FAE/FDE adopted son and
my FAS foster son from the link. So not only do I get
support from "faslink" but anyone I have contact
with has benefited from my having joined "faslink".
This is an invaluable service that I have been proud to
say helps people around the world. From what I have read
in posts from Bruce Ritchie I know the good work and support
that this link provides will continue in his capable hands.
The support and the archives must continue as FASD can
be stopped with the education of future generations. The
word will spread one person at a time but it will continue
to spread! For now we "faslink" must help the
generation we are raising met their full potential, and
be there to support their care givers.
Bev
Eastcott - gbkeastcott@mb.imag.net
If it is to be it is up to me! Ten 2 letter words to think
about!
From:
"Susan Egert" <sue@webadnet.com>
Thank
you from the bottom of my heart. I was thrilled to see
that faslink will continue because of your effort to keep
it going. We really need a place to share info that is
totally neutral...Again thanks sooooooooooo much!!!
Sue
Egertsue@webadnet.com
ICQ 8620510
Altamonte Sp. Florida
web site at www.webadnet.com/fas |
