June 2002

• Parenting tips after nineteen years on the job
• Poem: Being a Kid is Tough
• Longtime advocate receives Nichols Leadership Award
• Yukon's programs for adults with FAS-a model for small communities
• Here Are the Stars

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!