Parenting tips after nineteen years on
the job
Part 1 of a 2-part article by Lindy Dunagan-Groger
When I first met the Dunagan-Groger family in 1992,
Michael was a small, thin, wiry nine-year old. He had been diagnosed
with a variety of conditions including language and learning disorder
(LLD), attention deficit hyperactivity disorder (ADHD) and FAS.
He could focus for fewer than three minutes before he was on the
move. Testing him was a challenge.
Now he is close to six feet tall and he can spend
three hours working and chatting. He looks like many teenagers his
age-an attractive young man with a trendy haircut, “in”
t-shirts, low-slung baggie jeans, and earring, and a high school
graduation ring. However, once the conversation gets beyond polite
pleasantries, it is obvious that he remains vulnerable because he
doesn’t understand complex directions or verbal jokes and
he reads, writes, and does math at a first- to second-grade level.
Michael’s family has been successful raising
him to a young adulthood because of caring, intelligence, and creativity.
Michael is a good citizen and a true friend who is kind and hard-working
Lindy has worked hard to make “life” work for Michael.
I thought the family’s ideas and concerns would help others
who are approaching or forging through that big transition to adulthood.
Sandy Clarren, Ph.D.
How little I know when I carried Michael home from the hospital.
I can still vividly recall when we got a call saying, “Your
baby has been born.” For anyone who has adopted, you know
what that phone call means. A new life is waiting for you to take
care of it. Then I was holding him; he was nine days old, very sick
and all mine to bring home.
Would I have done it again? You bet?because when I walked out of
that neonatal intensive care hospital room I already knew three
things:
1) I loved him already! It was love at first thought!
2) He’d be the biggest thing I’d ever do with my life.
3) I felt chosen to have been given him.
Ignore the usual expectations for child development
Throw out expectations. Do not listen to what you’ve read,
heard, or been told by other people. Stop comparing. You will only
be disappointed an frustrated. Once I threw out the charts that
said where my child was supposed to be, I really started to enjoy
teaching and parenting him. There can be tremendous pressure on
a mom and the whole family to have your child “keep up.”
Children with FAS/E are going to learn and improve at their own
pace. Period.
Important note: These kids are on a delicate fragile path where,
when pushed, you can lose them. If their behavior tells you they’ve
had enough (hitting the walls, kicking?anything injurious or violent),
then it’s too much pressure. Back off and take a break. Wait
till things calm down before you try again.
Like your child (this isn’t always easy!)
This sounds so simple. It isn’t. I cannot tell you haw many
times I’ve seen parents’ and teachers’ relationships
fail with these children because they didn’t do one thing:
they did not like them.
These children are very sensitive. Many times a day then know they
aren’t keeping up and doing wheat needs to be done. Michael
actually said to a teacher, “I don’t like myself today,
but it’s okay, because my mom does.” Believe in those
kids. It caries them through.
Find a doctor and other professionals ASAP who understand children
with FAS. Your child’s doctor is your friend. You will learn
that your option as a parent matters little, unless you have a doctor’s
note and recommendations written and with you. Getting a diagnosis
isn’t always easy either. It took me nine years to get and
FAS diagnosis (and I had gone to some top people!). I remember bursting
into tears when the doctor finally said, “He has full-blown
FAS.” I wasn’t crazy. There had been something wrong.
Educate yourself and then you can educate others
Learn as much as you can about FAS and ways to help children with
disabilities. Ask questions and keep asking. Talk to your social
worker, your doctor, and other parents with similar issues. Get
on the Web, get on the phone, and tell others to keep their ears
open at the library. I am a library hound. When I walk into my local
library there’s a kind of hush?”She’s here.”
Watch for the life-changing moment
Every now and then you read, hear, or see something that changes
your life. That happened for me one day when I picked up an autobiography
of a young man with quite severe learning disabilities. His “flashback”
told of what it had been like to grow up with peers, a family, and
adults who were constantly criticizing h8im and letting him know
how stupid he was. It was a heartbreaking book to get through.
Instead of the usual book where the adult or professional describes
what it’s like to work with a disabled child, this book described
what it’s like being that disabled child; being at the mercy
of those who, though caring in their own way, treat him terribly
in the process. He writes “I knew they loved me, but did they
have to be so hateful and mean all the time?” I made up my
mind that I would be Michael’s help-mate, not his hurt-mate!
Wherever Michael was going, however he needed to get there, whatever
friends and professionals were along the way, we were going there
together in a positive way. Eventually, he would know I had been
there for him, not against him. This approach must be working because
he has pretty high self-esteem. A teacher’s aide told me once,
I’ve never seen a kid with so many problems who feels so good
about himself!” She then apologized because of the way it
came out. I still treasure that comment to this day. It proves there
is a better way. Even with his problems, others could tell he felt
good about himself. I was succeeding!
Get, find, or buy a sense of humor
I find my son to be a riot. The only way to enjoy and love these
kids it to see the humor in them. He makes me laugh all the time.
Be silly with them. They need buddies. Rarely do these children
have many (if any!) friends. They can’t learn better social
skills until they have someone to practice those skills with. You
can be that person. You’re not just laughing with them, you
are teaching them how to be a socially acceptable, confident person
who others will want to know.
Use faith and/or prayer
I pray every day. When I do not pray, my world falls apart. While
we are not churchgoers (it is very tough for my son to keep it “together”
for two to three hours at a church service), you will need faith
to get through this.
Provide quiet areas
I cannot put enough emphasis on providing an easily available quite
area, filled with your child’s favorite calming things. Michael
loved tapes, nature books, hot wheels, Logos, etc. These areas should
be at home, at school, at grandparents, at daycare, etc. With a
quiet area, the child will learn to calm himself. You can keep on
with your task and the child won’t be ostracized or yelled
at. It isn’t a “time out” corner?it’s a
cal-yourself-down area. “When you have calmed down, you may
come back and participate.” The quiet area is great for “bad”
days.
Role-play everything – they don’t get it!
Role-play everything before you get to the activity ahead. Never
assume that the child will figure it out. Wherever you need to go,
before you start out, write down, say, act out, and rehearse appropriate
behavior. They don’t figure out situations on their own. Most
parents and teachers will tell a child “Stop doing that,”
bug then forget to say “Do do this.” These children
have to be taught not only what not to do, but what to do.
Try bribery and rewards
During Michael’s childhood, many said it was unrealistic
to carry stickers, gum, and other things as rewards. All I can say
to that is my child is the most polite and well-behaved child with
FAS that I’ve ever seen. I can take him anywhere and be proud.
He learned “baby steps” of appropriate behavior with
small rewards along the way. The size of the reward matched the
size of the accomplishment. What did Michael learn? He learned that
with appropriate behavior and by accomplishing tasks, he could “do
it.” Phooey to my critics.
Act like a professional representative for your child
Act like a professional caregiver at all times. When you are discussing
your child with anyone, remember that they will confide in you ,
trust you, and believe you more easily if you aren’t hysterical
all the time. Who wants to discuss important things with a parent
who’s a wreck or angry? Not me?and not them! You are representing
your child’s needs to others who can help. Act accordingly,
and they will treat you with respect thereby keeping the lines of
communication open.
Serve as a “bridge” when the child interacts with
others
A parent or another adult has the power to act as a “bridge”
from where a child is and where he or she needs to be. It won’t
happen without us. Examples of acting lie a bridge include: talking
about your child to the parent of another child in his class or
activity; explaining “special” needs to other children
so they understand (and, therefore, might give this kid a chance!);
or directly explaining “recess behavior” to a child
with FAS who doesn’t “get it.” Teachers, parents,
recess helpers, and counselors all have the power to be the essential
bridge.
I created what I call “interest cards” to help other
people understand what made Michael tick. I sent an index card with
Michael to school, daycare, or a relative’s that described
things Michael enjoyed and would find familiar and comforting—toys,
colors, books—as well as things he didn’t like. Getting
a special child to do anything can be difficult, but an index card
filled out by the parent (and the child!) can help with many a difficult
day.
Say thank you — all the time
Say thank you to everyone who helps with your child. Every chance
you get and every time you can. People who work with kids who have
special needs don’t get thanked often. Show your appreciation
for those who work with your child.
Take care of yourself — first!
When someone first told me this I thought it was the most selfish
thing I’d ever heard in my entire life. Then I didn’t
do as she had suggested and I collapsed due to emotional and physical
exhaustion.
You must take care of yourself, or both you and your child will
suffer. I don’t care if this means leaving your child at your
friend’s, the neighbor’s, day care, grandparents, or
going to the playground, McDonalds while they eat a happy meal and
play on the equipment. Whatever it takes, do it! You must have time
to yourself to regroup.
I also recommend a support group of some kind. Being isolated can
be emotionally destructive for both you and your child. Mommies
need to play, too. We matter!
Lindy Groger-Dunagan will describe recent experiences
regarding the transition to adulthood in the September issue.
Sandy Clarren, Ph.D., is an educational psychologist
in private practice an and associate of the FAS Diagnostic and Prevention
Clinic at the University of Washington.
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Being a Kid is Tough
By Jason Lawniczak
Being a kid is tough, ‘cause they
Can tell you what to do.
Nothing is completely yours.
Your jail is your home.
People love you—that’s okay—
And do nice things for you.
But what you want are open doors
To fields where you can roam.
Jason Lawniczak is a young poet whose poems
appear in this issue. Jason is currently a student living in Ohio
who aspires to join the military and to become a member of the military
police.
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Longtime advocate receives Nichols Leadership
Award
By Dr. Ann Streissguth
Marceil Ten Eyck, founding member of the Fetal Alcohol Syndrome
Information Service (FASIS) and this publication, Iceberg, was the
recipient of the Nichols Leadership Award on December 14, 2001.
The award is given annually to a person or group in the Seattle-area
community who has demonstrated consistent advocacy on behalf of
chemically dependent women and their families. Marceil was honored
in a public reception at Residence XII, a premier residential program
serving that population, with friends, admirers, and her family
present.
Marceil was especially commended for her tireless efforts as an
educator and advocate for those living with fetal alcohol syndrome
and fetal alcohol effects. In particular, the treatment community
was grateful for her leadership in sharing her personal experiences
as she guided her own daughters with prenatal alcohol exposure through
adolescence and into adulthood.
Her willingness to travel great distances to help other communities
understand how women who have produced children with FAS/FAE can
change and grow, and her ability to be a “creative, courageous
and innovative” parent to alcohol-affected children and adults
were especially noted. Marceil’s own writings and those of
her daughters were cited as important educative examples of her
leadership role.
One of those giving testimony was Marceil’s daughter, Sidney,
who acknowledged her own appreciation of her mother’s support
and understanding. Jim Fox, Marceil’s husband, described her
strong desire to help other alcoholic women stay clean and sober
and to make a full life for themselves.
Marceil was one of the first women in recovery to reach out to
other alcoholic women whose children have been impacted with prenatal
alcohol exposure. A tireless educator and mentor during the world’s
growing awareness of FAS/FAE over the past 25 years, she has inspired
other women to become role models for their families and communities.
We have all learned much from Marceil and her family and are honored
to have her as our friend and colleague.
Ann Streissguth, Ph.D., is a founding member of the iceberg editorial
board and director of the Fetal Alcohol & Drug Unit at the University
of Washington in Seattle.
[“I Didn’t Know (A Birth Mother’s Story)”
appeared in the first edition of Iceberg in February 1991. Subsequently
published articles by Marceil and her daughters, Stefin Pummell
and Sidney Guimont, are available in “From the parent and
family” reprint packets.]
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Yukon's programs for adults with FAS-a model
for small communities
By Judy Pakozdy
A private, nonprofit board, Options for Independence, runs an apartment
building for adults with FAS. This is a three-year pilot project,
which ends in November of this year. Funding has been very difficult
to obtain throughout the project. There are four two-bedroom and
one bachelor apartments and seven adults with FAS live there. A
support person is in the building from 5:30 PM to 1:00 AM every
day, and, at the residents’ request, a private security guard
checks the building regularly until 6:00 AM.
During the day, residents work, spend time at day programs with
government support staff, or engage in other activities. In the
evenings, residents can gather in the office (a renovated apartment)
to watch videos, play games, talk, or eat supper with the support
staff. Research data reflecting the difference that stable, supported
housing has made to these individuals should be available by November
of this year. It is hoped that this project will serve as a model
for communities throughout Yukon to develop something similar and
for additional programs to be offered in Whitehorse.
Another program is a seven-week supported activities program run
by the Fetal Alcohol Syndrome Society of Yukon (FASSY) in conjunction
with the Committee on Abuse in Residential Schools (CAIRS). Every
Tuesday evening, 17 adults with FAS are picked up from wherever
they live by a support worker in a van/taxi and are brought to the
CAIRS craft rooms. Supper is provided. They then spend three to
four hours with instructors working on projects of their choice—sewing,
rattle making, woodcarving, clay pipe making, knife making, and
beadwork. They get to take home whatever they make and many have
made gifts for family and friends.
Each workshop has two FASSY support staff and two teachers, as
well as two or three support staff who may be mandated to stay with
their clients. Everyone participates, laughs, works, talks, and
has a good time. At the end of the evening, the van/taxi with the
support worker takes everyone home again with promises to meet again
next week. Feedback from participants is that they would like this
program to continue as it gives them a chance to have fun and to
learn new things. We have applied for funding to continues this
program for the next year, but have not yet heard back.
Two of those participating in these Tuesday evening workshops are
also participants in another program. FASSY sponsors a program of
one-on-one support for three adults with FAS who live independently
in the community. One of these adults ia a young woman whose four
little girls live with her ex-husband but spend every weekend with
her at her apartment. Another is a 32-year-old man who has spent
the past 15 years on the street. The third adult is a young woman
who has recently lost custody of her daughter.
Two support workers spend whatever time is necessary to help their
clients succeed. Two clients not only required safe housing to be
found and secured for them, but needed support to access funding
to pay for it. Finding furniture, helping with moving in, providing
transportation and support at meetings, helping to find and keep
a job, etc., requires contact every day of the week. Finding opportunities
for positive social activities is also one of the tasks in helping
clients succeed.
FASSY also has a discretionary fund developed through private donations
that provides for groceries when the money runs out, bus passes,
swimming pool passes, movie passes, and other expenses that no one
else seems to fund. This fund has also been used to pay for pre-mixed
iron-fortified formula for a mom with FAS whose one-month-old baby
was not breast-feeding well enough to maintain her birth weight,
but who could not access funding for such an expensive formula.
Judy Pakozdy is the executive director of Fetal
Alcohol Syndrome Society Yukon (FASSY) in Yukon, Canada. FASSY is
a nonprofit, non-government organization of parents, advocates and
concerned individuals whose mandate is “to make a difference
for people living with FAS.”
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Here Are the Stars
Jason Lawniczak
Here are the stars!
Take a chance,
and seize the day.
Here are the stars.
The ones you wish upon,
and the ones you dream
upon.
Here are the stars!
On a midnight clear,
they twinkle and shine.
Brightening the towns,
and the crowds.
Go and see,
the illumination from
Above.
When you dream,
the stars are there.
They capture your
heart’s inner desires.
Holding them till the day,
you wish to claim them.
Take a deep breath,
and think of my words.
Bring them into
your mind and soul.
Will you search
For your star above?
Come out to see,
and you will not disagree.
It is your star
for all to see.
Let it shine
and open your mind.
When your mind
is open to the world
your dreams and hopes
will come to you.
All you need is
the will and initiative.
Here are the stars!
Take a chance,
and seize the day.
Here are the stars.
The ones you wish upon,
and the ones you dream
upon.
Here are the stars!
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