September 2009

• The ABC’s of Parenting a Child with an FASD
• Book Review: The Fatal Link: The Connection Between School Shooters and the Brain Damage from Exposure to Alcohola>
• Poem: I Will
• Submit an Article to Iceberg

Our first readers’ edition!

We are delighted to present the first Iceberg issue written solely by Iceberg readers.  Our readers include professionals working or researching in the field of FASD; birth and adoptive parents of those with FASD; and children, teens and adults diagnosed with FASD.  From this community comes a wealth of first-hand experience and knowledge about living with and helping those with FASD. We hope you enjoy this issue as much as we have. And, if you have a story to share, please send it our way.

---the FASIS Board

For more information about submitting an article to Iceberg, please see Submit an Article to Iceberg.

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The ABC’s of Parenting a Child with an FASD

By Anne Hedelius,  LSW

When my husband and I adopted a sibling group of children with FASD it didn’t take long before the honeymoon ended and we found ourselves in need of a specialized set of parenting tools.  We were experienced parents yet we found ourselves upended when everything we knew no longer seemed to work.   That led us to develop, through trial and error, the following list of skills.

Advocacy-We needed to advocate for our children with schools, doctors and therapists.   In order to become good advocates we attended trainings in our community, joined a support network and worked with a therapist.

Anger Management-Learning to manage our own feelings of anger and frustration enabled us to stay calm when dealing with our children.   We quickly learned that the more upset we became the more upset they were in response. 

Baby First-It is important to remember that the child with an FASD is a baby first.   They have all the same needs as any other child and their uniqueness is to be embraced and celebrated.   They are a child with an FASD not an FASD child.

Compassion-It is important to develop a sense of compassion for the child and their circumstances.  This is not pity but sensitivity to and appreciation for what they have survived.

Creativity-This is an important skill.  When things are not working it is important to be able to think outside the box and be open to new ideas.   We frequently ask ourselves what else we can try that hasn’t been tried before.  Decide on a time period for each intervention and at the end of that time evaluate how things are going and be prepared to make changes.   It is important not to get locked into patterns that are not working.

Confidence-Believe in your ability to successfully parent this child and do not accept blame when things are not working.   Blame is unproductive and blocks our ability to solve problems.

Control-“Control what you can control” has been one of our mantras.   There are a lot of things we can’t control but we can decide to establish predictable routines that provide security for all members of the family.   It is also important to recognize power struggles with the child early on and to find ways to disengage.

Chaos-There can be a lot of chaos when living with children that have an FASD or that have come from chaotic family environments.   It is important that parents decide what the atmosphere of the home will be and then take steps to make that happen.

Division of Child and Family Services-Learn how to utilize services and get to know key people who can help you access those services.  The child benefits when everyone works as a team.

Disability-The child with an FASD has a hidden disability.   This can make it very hard to get services for your child.   It is important to educate yourself about what services are available and how to qualify.  At times the process of getting services turns the focus more towards the disability and ignores the ability of the child.   It is up to the parents to advocate for balance and to identify the child’s abilities.

Despair-You may find yourself in a place where you are experiencing post adoption depression.  The child you have adopted is likely different than the child you thought you would be parenting.  It is important to acknowledge these feelings within a supportive relationship.

Discipline-What has worked with your other children may be very inappropriate for the child with an FASD.   Actively search out and learn new techniques to manage the child’s behavior.

Education-Children with an FASD will need involvement with special education.   Learn all you can about the process and how to advocate for your child.   Come to meetings prepared and bring medical records to support your requests.

Expectations-Learn to adjust your expectations, the child you are parenting is most likely not anything like the child you dreamed of before becoming a parent.   Parenting a child with an FASD requires a lot of flexibility.  Hanging on to pre-adoption fantasies and refusing to embrace the child you have will cause needless suffering for you both.

Family-Be sure to prioritize relationships with other family members.  It is important to keep balance and not be overwhelmed by the needs of your child with an FASD to the point that you alienate other family members.   They may not always understand what you are going through or see the child’s disabilities but you do need their support in whatever way they can provide it.   Parenting a child with an FASD is not a sprint but a marathon and you will need a strong support network.

Faith-Take care of yourself and your family spiritually.   Children with an FASD can benefit from the programs, love and support of being part of a faith organization.   A strong social network with people in the community can be protective for parents and children.

Finances-This is another area where balance is important.   Be careful to exhaust all community resources first before spending privately.   The child with an FASD has long term needs and it is important not to get caught up in therapies that offer an instant cure.   If medical insurance won’t pay for a therapy then there may be good reasons why not.  It may not be proven or effective.    It is important to have a will outlining who will care for your child with an FASD if you cannot, appointing a guardian and setting up a trust to care for the child’s needs.

“Fix What You Can Fix”-This had been another mantra of ours.   It is important to allocate energy efficiently to avoid burnout.   If you are experiencing frustration then you are probably trying to fix the unfixable with your child.   Accept limitations and put your energy into working with strengths.

Gentle Parenting-Children with an FASD respond best to a calm supportive style of parenting.   If this does not come naturally to you then learn some techniques and practice them until they become habits.

Grief-The stages of grief are often referred to as denial, anger, bargaining, depression and acceptance.   Expect to revisit this often over the years as you encounter new limitations with your child.   Your child has suffered significant losses and you are parenting a child very different from the child you expected to parent.  Learn to recognize signs of grief in yourself and your child and develop ways to cope as you encounter them.

Hope & A Sense of Humor-These are so important when dealing with a long term disability.   Maintain hope that things will work out for the best.   Plan regular times of fun for the family and as individuals.   Do not get so caught up in what is wrong that you forget to celebrate what is right.

Independence-Your child with an FASD will yearn for the same sense of independence that all children crave.   Help them master tasks and then allow them to do it for themselves.   At the same time be aware of their increased need for supervision and try to provide this in a way that is not intrusive.

Isolation-Be very careful not to isolate yourself.  It can be hard to find support but keep looking until you connect in a small group or with a few people who do understand. 

Information-Information can also be hard to find but keep looking until you find the answers you need.  

Juvenile Justice System-Be prepared to advocate for your child and hire an attorney to represent your family.   Be prepared to provide copies of current psychiatric and medical records to support your child’s needs.

Kinship-The child with an FASD may have relatives or siblings they need to maintain contact with.  Do what you can to support these relationships without sacrificing the integrity of your family.   These relationships are important to the child but should not be allowed to disrupt current stability.

Legal Responsibility-Your expectation may have been quite different when you became a parent but being a parent does not guarantee you a relationship with the child.   It does create a legal obligation to provide support and to continue parenting even if the relationship is not working.

Marriage-Make your relationship with your significant other a priority and set aside regular time for each other.   Do not allow the child’s behaviors to polarize you and do not blame each other when things go wrong.   Work together and believe that your child benefits most when the parents maintain loving control of the home.

Needs-Much of the time the focus will be on the needs of the child but do not overlook your own needs.  A capable parent is one who takes good care of themselves and schedules time for stress management, fun, exercise, education and adult relationships.  

Outlast-Often we need to persevere and outlast the child’s behaviors and agency policies.  It is important not to give up too soon.  Advocate for change but be prepared to endure until change comes.

Partnership-It is impossible to raise a child with an FASD alone.  You will need to partner with multiple agencies.  Learn how to put personality differences aside to get what you need for your family and your child.   Learn their language and dress professionally so they take you seriously.

Peers-Provide frequent supervised activities that are of interest to your child for peer interaction. 

Quit-“It’s always too soon to quit.”-Norman Vincent Peale.   You are running a marathon with this child and you will often be tempted to quit along the way.   There may come a time for giving up but not yet.

Respite-Respite can seem impossible to find but it is important to find a way to make it happen.  

Residential Treatment-Children with an FASD often will need times of residential treatment.  It is important not to view this as parental or child failure.   The child’s needs may become so overwhelming that they are best met in a medically supervised setting.  Use this time to learn new skills and establish balance in the family.

Reciprocity-The child with an FASD may not be able to reciprocate in the ways that other children do and parenting may feel unrewarding.   It is important to adjust your expectations of the relationship and to accept any small gestures the child can make.

Rural Regional Centers- Our children were never eligible for services but your child may be.  

Siblings-Your child with an FASD may have siblings within and without the family.   There may be biological, step and adopted siblings.   Help your child to navigate these different relationships and to understand their role in the family.   Be careful not to be so overwhelmed with the needs of your child with an FASD that the other children feel neglected.   

Temperament- Every child has a unique personality and way of reacting to situations.   Know your child and create a stable, predictable environment where your child feels safe.   Do not be overwhelmed by excessive displays of emotion by your child; stay calm and manage the environment until your child regains control.

Utilization of Services-Every community has multiple agencies that provide services to individuals with disabilities.   Get to know the agencies in your community and the criteria for eligibility.   Initially it may seem like a lot of work but once services are established the effort to maintain them is usually minimal.

Vacations-We are strong believers in family vacations and we plan several each year.   At the same time we are aware that the unpredictability inherent in vacations can be very upsetting to our children with an FASD.   Find a way to make it work so that you can anticipate having fun together.   At times allow the child with an FASD to go to respite so that other family members can enjoy a time apart.

Weekends-Weekends can be a time that lacks structure and becomes problematic when parenting a child with an FASD.   We plan structured activities for the weekends and try to stick to our weekday routines.

eXperience-There really is not a substitute for experience.   Over time we learned what worked best for each child and we were able to make plans that avoided most difficulties.   We spent a lot of time going to professionals and reading books but in the end we knew our child best and had to trust our instincts.

Youthful Energy-We sure could have used more of this while caring for our children with an FASD, but as older adoptive parents it was in short supply on our end.   We decided early on which behaviors we could manage at home and which behaviors would require a higher level of care.   Asking for help and allowing a child to go to a higher level of care is never easy but we often found it necessary for the safety of the child and other family members.

Yearn for Change-We have seen more awareness of FASD over the years and there is more support now than before.   There is still a long way to go.   Right now we have to work within current systems but we yearn for change and a time when children with an FASD will be entitled to the same resources as other children with disabilities.   We hope the journey will be easier for the families that follow us.

Zany-Maintain your sense of fun, think out of the box, be zealous in embracing new ideas and offer your child every opportunity to excel.

Anne Hedelius, LSW, is a licensed social worker completing an M.A. in Human Services. She and her husband are adoptive parents of eight children, three of which have FASD.

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Book Review:
The Fatal Link:  The Connection Between School Shooters and the Brain Damage from Exposure to Alcohol, by Jody Allen Crowe (2009; Denver, Colorado: Outskirts Press)

It is best to begin by stating this book is controversial.  Many concerned families believe it places children with FASD in a dangerous and prejudicial light.  However, families and experts that deal with FASD may find they need to know the pros and cons of this book.  As the general public learns more about the behavioral and physical problems of Fetal Alcohol Spectrum Disorders, it is important to know that “spectrum” does mean a wide range of behavioral and physical issues.  Defining FASD by a narrow set of problems that sensationalizes violence alone does a disservice to families and the community.

Mr. Crowe seems to have done extensive research on the backgrounds of several school shooters.  He makes a convincing argument that many young people who have committed violent acts have a family history of alcoholism with probable brain damage due to prenatal alcohol exposure.  Most of his sources are from the FBI and state and local police. However, portions of the book that cover the background research on FASD do not site sources.  The book does not have a bibliography; this calls into question the validity of the academic research that is mentioned.

What is lacking in Mr. Crowe’s book is a discussion of the wide scale of effects of Fetal Alcohol Spectrum Disorders – that is, the timing, duration and amounts of alcohol consumed.  He also does not address that along with general health, maternal age and genetic disposition, prenatal exposure to alcohol is very much an individual thing.  He fails to explain that physical and behavioral manifestations can occur in each child from the very severe to the very mild and no two are exactly alike. For these reasons, the book falls short of a complete and learned discussion of the multidimensional nature of Fetal Alcohol Spectrum Disorders and its relationship to behavior.

Reviewed by Peggy Seo Oba of The Fetal Alcohol Syndrome Information Network (www.fasin.org).FASIN provides free information to families, agencies and countries on FASD.  To date, FASIN has reached out to 40 countries on all continents except South America.

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I Will

I won’t do it right, because I can’t.
I will find success, watch me.

I will not feel a thing when it hurts, because I can’t.
I will see tomorrow as a new, bright day.

I won’t see what I did as wrong, because I can’t.
I will stand up and make you see me as a confidant person.

I won’t ask again, because I can’t.
I will not be ashamed to try over and over again.

I won’t say yes when what I mean is no, because I can’t.
I will shout from the rooftops, “I’m normal”!

I won’t feel bad about myself, but I do.
I will look in that mirror and smile.

I won’t try to feel that I need to be perfect, but I do.
I will only do what I can.

I won’t say that I’m broken, but I am.
I will find the pieces and put them back together.

Today is your day, my day, there day.

Today we will change the world, shape it and recreate it

To make it fit in our lives.

We are different, but we will stand and together we will

Feel free to be you, them, and me.

This year's FAS Day celebrates the 10th anniversary of this incredible international day of awareness

Written by Jennifer Woodward, who has been diagnosed with FASD.

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Submit an Article to Iceberg

Our goal at Iceberg is to publish current information impacting those with FASD, their families, caregivers and professionals. We strive to include a range of voices in our articles. If you have a compelling story to tell about FASD, please submit an article for our pages. Email it to iceberg_fas@yahoo.com with your article included as a Word attachment. We look forward to your contributions.

Thank you.