March 2003

• Family stress in parenting a child or adolescent with FASD
• Poem: I Sit and Watch
• Successes: Grant develops free computer games and songs to help children with FAS

Family Stress in Parenting a Child or Adolescent with FASD

By Julie Gelo and Kieran D.O’Malley, M.D.

The impact of a child or adolescent with fetal alcohol spectrum disorder (FASD) on a family is multifaceted. The stress of care can be described in four broad categories:

• The physical health of the child/adolescent.
• The mental health of the child/adolescent.
• The financial stress of care giving on the family.
• The emotional stress of care giving on the family.

The physical health of the child/adolescent with FASD

Prenatal alcohol exposure may cause alcohol related birth defects (ARBD), which include kidney, liver, cardiac, and feeding problems and a range of birth defects such as eye defects and cleft lip/palate. These physical problems require medical care themselves but may also complicate the child’s response to medication, e.g., the risk of cardiac, liver, or kidney toxicity.

Therefore, the involvement of a primary physician or pediatric specialist, familiar with FASD medical problems, is an essential part of the clinical management team.

The mental health of the child/adolescent

These children and adolescents show complex mental health problems with overlapping diagnoses. Our diagnostic system, the DSM IV, is based on criteria, and children and adolescents with FASD may meet the criteria for a number of diagnoses.

The mental health problems are a mixture of organic brain dysfunction and a psychiatric disorder with the developmental disability collectively being called a dual diagnosis. Thus, it is not unusual to see features of ADHD with co-morbid anxiety or mood features in a child with FASD, as well as developmental delays in areas such as gross or fine motor, language, intellectual and social functioning. This is the essence of their neuropsychiatry disorder.

An adolescent may offer features of a triple diagnosis with a combination of developmental disability, psychiatric disorder, and addictive disorder. In this case, he or she may present with a mixture of affective instability, intermittent explosive disorder, combined with a developmental delay and a substance abuse disorder. The limitations of the DSM IV diagnostic system prevent us from distinguishing those with FASD who may have one core problem, organic brain dysfunction, from those who have inherited traits that can be expressed as the independent diagnoses of ADHD, depression, bipolar and anxiety disorder. Because of this limitation, adolescents with FASD who manifest symptoms that are consistent with many other psychiatric disorders are diagnosed with "personality change secondary to prenatal alcohol exposure.” In fact, sometimes the clinical presentation is a mixture of inherited and prenatal alcohol acquired psychiatric disorders.

The use of medication in patients with FASD is a further complication because of the potential atypical response of an alcohol-damaged developing brain to any psychotropic agent. If the symptoms are all related to the core problem of brain damage, responses to stimulants for ADHD, antidepressants, or mood stabilizers may be marginal. Others may have a better response to psychiatric medications if they truly have a dual diagnosis.

The optimal approach is to have a mental health professional who can consult with a child/adolescent psychiatrist. Also, a multi-disciplinary educational team, including a language specialist, should be available to address the developmental disability component of the disorder.

It is worth acknowledging that an appropriate mental health, language, or school intervention can have a marked positive effect on a child or adolescent with FASD.

The financial stress of care giving on the family

Financial stress is often not discussed directly, but may become overwhelming Family stress. The constant balance of need and resources (fiscal or human) is an ever present part of the management of these complicated children and adolescents with FASD.

A post-adoption financial agreement is an essential part of care planning for the adoptive parent. If the child remains with his/her birth parents, they also need financial support for care giving.

These children or adolescents impact many different systems throughout their life span. Each system involvement has financial implications for long-term care. The systems that can become involved include:

• Health care system
• Mental health system
• Education system
• Child welfare system
• Vocational /rehabilitation system
• Disability system
• Chemical dependency system
• Criminal justice system

An example from Washington State is given below to highlight the financial problems associated with adopting a previous foster child.

Before July 1996 when a foster parent adopted a child with special needs (such as a child with FASD), the adoption subsidy was limited to continued Medicaid, psychiatric benefits if pre-approved for the future, and a monthly stipend amount capped by the legislature that was equivalent to about 90 percent of the basic foster care rate.

In foster care, the foster mother received the following amount for a child with FAS (Julie Gelo, personal report):

• Basic rate ........$296 /month
• Special rate ......$141 .50 /month
• Exceptional ......$300 /month
• Respite care ......16 hours /month
• Day care ........$140 paid/month
• Mileage .........31 cents /mile

The total reimbursement for this female child with FAS was $1270 per month, but when the child was adopted this monthly amount changed to $285 per month. This was a monthly decrease of 77.6 percent. This obviously is a huge financial penalty for wanting to adopt any special needs child with FASD.

The common problem appears to be one of “emotional entrapment.” So the adoptive parents inherit a marked financial burden for fear of losing a child to whom they have become attached. Theoretically, Washington State (and other U.S. states and Canadian provinces) want adoptive parents to have the same lifestyle as they did as foster parents, but the immediate financial burden of changing status from foster to adoptive parent has a marked and significant impact.

It is, therefore, important to establish a clear working relationship with a local social worker involved with children with special needs. This relationship will help to clarify financial impact of such a child or adolescent in the home and also acknowledge the ongoing role of post-adoption funding. It will, as well, create avenues of extra funding for birth or foster parents, which are needed for management issues such as transportation to a medical specialist or respite care support.

The emotional stress of care giving on the family

This emotional stress is one of the unspoken problems in taking care of a child or adolescent with FASD. The demands of nurturing are constant and ever changing.

The parents can develop what is called “compassion fatigue.” This was initially described in mental health therapists and has its origins in the term “burnout.” However, the description of compassion fatigue seems to have direct applicability for parents of a child or adolescent with FASD and special needs. The initial symptoms may be mild, such as headaches or backaches, but gradually more severe symptoms occur which can progress to severe depression and can precipitate marital discord.

Compassion fatigue in parents is often exacerbated by mental health professionals’ reactions to the complex needs of a child with FASD. The hopelessness and helplessness the medical community sometimes shows often disconnects and invalidates the parent’s need to have the problems of the child understood. Blame becomes an unfortunate common issue. This shows itself in different ways, but one of the most destructive ways is a perception that the parent is over responsive and is seeking to have his/her emotional needs met through the child or adolescent. Pejorative comments by the mental health professionals about the parents making up problems can sometimes lead to blaming the parents, even to the extent of suggesting Munchausen’s syndrome by proxy.

Also, the family unit is challenged by the acceptance of a child with FASD, so they sometimes need to grieve the loss of an “idealized” family. The stages of grief from Kubler-Ross are useful in therapy. Denial, anger, despair, bargaining, and acceptance are often seen in families, and family members often fall on different levels of this grief continuum. It is useful for them to clarify where they are on the continuum towards acceptance.

The complexity of mental health and physical needs of a child with FASD are ever present, and the parent is often the one person who fully understands their complexity. The pediatric or psychiatric specialists often see particular parts of the child’s problems, but not necessarily the totality. So it is essential that regular case management meetings, which include parents and medical specialists/mental health therapists, be held to clarify the current level of the child’s disability and the impact of therapy. This pragmatic approach commonly protects and validates the parents as they perceive subtle but significant changes in their children’s medical and mental health progress. Knowledge of compassion fatigue acts as a protective factor against its occurrence when parents and professionals are sensitive to its possible development.

Taking a holistic approach

The holistic approach to treatment for the caregiver clearly shows the potential for decreasing the compassion fatigue or emotional stress in the parent by helping to maintain the parent/child bond.

This approach also serves as a way to break the cycle of abuse and alcoholism so intimately intertwined with each case of FASD. The tragedy of trans-generational repetition of alcohol/substance abuse is a legacy of FASD. Only a therapeutic approach which involves many systems, empowering the parent/child or parent/adolescent bond, can really loosen this compulsion to repeat and to continue the vicious cycle.

It is essential to understand the stress of care giving and its emotional risk to the parents who often have many roles such as mother, father, advocate, teacher, and therapist. It is important for the mental health professional to support and validate these roles especially nurturing the parent/child bond. Compassion fatigue is very real and sometimes subtle.

Respite care is essential to allow the family to have time to nurture themselves. Ideally, it should be only with trained caregivers and at reasonably frequent intervals, e.g., two to four weeks. Respite care should be regularly planned, as seen in some cultural communities, such as Native American, where the child goes to an aunt or uncle.

This offers fewer transition problems for the child. In other cultures, it may be less disruptive to have a respite care worker come into the urban home, thus letting the parent leave for some relaxation time. Parents should negotiate to keep respite care time even if a teenager with FASD has become involved with a youth worker.

Families raising alcohol-affected children or other chronically disabled children must contend with the exhaustion of the care taking role. It is essential to plan ahead for financial needs, respite care, and psychological or mental health services. Taking time for themselves individually and as a family is a necessity. The details of their families may differ, but the theme of complexity is a common thread that runs through all their lives.

The authors wish to thank Heather Carmichael-Olson, Ph.D., at the University of Washington FAS Diagnostic Prevention Network Clinic for her encouragement and initial work on this article, which began over two years ago! Also thanks to Joan Sienkiewicz, research advocate at the Fetal Alcohol and Drug Unit in Seattle, for her perceptive comments.

Julie Gelo is the family advocate at the University of Washington FAS Diagnostic Prevention Network. She is also the birth mom, step-mom and adoptive mom of thirteen children. Eight of these children have been diagnosed with FASD.

Kieran D.O’Malley, M.D., is acting assistant professor at the University of Washington in the Psychiatry and Behavioral Sciences Department and Jackson School of International Studies. He also has a small community psychiatric consulting practice in Calgary, Canada, dealing with patients who have FASD or autistic spectrum disorder.

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Poem: Ich sitze und sehe zu (I Sit and Watch)

By Ann Gibson, September 22, 2002

• In the origional German
• Translated into English

Ich sitze und sehe zu

Ich sitze und sehe zu, wie meine 14-jährige Tochter ihre Matheaufgaben macht, mein Herz zerbricht weil sie nicht 4 von 5 abziehen kann, ohne die Finger zu benutzen.

Ich sitze und sehe zu, wie sie ihre Hausaufgaben liest und merke, dass sie liest wie ein 8-jährige.

Ich sitze und sehe zu, wie sie ihre Haut vom Fuß abpult, und weiß, dass sie nicht mal humpeln wird mit dieser großen Wunde.

Ich sitze und sehe zu, wie sie wie ein Nichtschwimmer im tiefen Wasser reagiert, wenn sie mit Mädchen im gleichen Alter zusammen
ist.

Ich sitze und sehe zu, wie sie auf mich zukommt,
Kopf nach unten, so dass keiner ihr FAS-Gesicht sehen kann.

Ich sitze und sehe zu, wie sie ihre Arme über ihren Brustkorb hält,
um die fraulichen Merkmale an einem Körper zu verstecken,
der nicht im Einklang mit ihrem Gehirn ist.

Ich sitze und sehe zu, wie sie da alleine steht,
und zuschaut, während andere Kinder Spaß haben.

und dann...............

Ich sitze und sehe zu, wie sie einen Springparcours erfolgreich hinbekommt,
wo ältere Mädchen die kein FASD haben, ausgeschieden sind.

Ich sitze da und sehe zu, wie sie den 11. Platz bekommt von 50 Teilnehmern,
und mein Herz ist fast am Platzen, da ich so stolz bin.

Ich sitze da und sehe, wie sie lächelt als eine Rosette an ihr Pony gesteckt wird,
und ich möchte ganz laut schreien,

"das ist MEINE wunderbare Tochter!"

I Sit and Watch

I sit and watch.

I sit and watch my 14-year-old daughter
   doing maths.
My heart breaks that she can’t take 4 from 5
   without using her fingers.

I sit and watch her reading her homework,
and realize that she reads like an 8-year-old.

I sit and watch her pick the skin of off her feet,
and know she won’t limp with the pain
   of her wounded foot.

I sit and watch her, like a swimmer
   out of her depth,
when she’s confronted with girls her own age.

I sit and watch her come towards me,
   head down,
so that no one will notice her FASD face.

I sit and watch her, arms crossed over her chest,
to hide the signs of womanhood on a body
   out of sync with her brain.

I sit and watch her, standing alone,
watching other kids having fun.

And then ...

I sit and watch her complete a horse riding event,
where girls older and without FASD are
   disqualified.

I sit and watch her get eleventh place from
   almost fifty competitors,
and my heart swells with pride.

I sit and watch the smile on her face, as a rosette
   is pinned on her pony,
and I want to shout out loud,

“THAT is MY wonderful daughter !”

Ann Gibson, FASworld Germany
www.fasworld.de

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Grant Develops Free Computer Games and Songs to Help Children with FAS

by Dorothy Strickland, Ph.D.

Research with the National Institutes of Health developed simple computerized games for children three years old and up to let them practice recognizing these two types of dangers: a fire in the home and street safety hazards like crossing at a crosswalk. Following good teaching techniques, all games are divided into short parts, such as first practicing getting out of a home with a fire, then practicing what to do if there is smoke.

When it comes to personal safety issues, children with FAS are often at higher risk from everyday dangers than are other children. Their seeming lack of fear, combined with a short attention span and hyperactivity, can make them vulnerable while also making it more difficult to explain the abstract concepts of appropriate actions.

When a group of therapists, teachers, and educators asked parents of children with special needs what their main safety concerns were for their children, fire and street dangers were always mentioned. The normal recommended teaching method for these use booklets to explain the safety ideas. For children with FAS, repeated practice with concrete examples and continual reinforcement are often necessary to learn and retain skills.

The child is placed in the chosen scene and can move around the virtual world freely with the use of a mouse or the four keyboard directional keys. An animated character inside the virtual world demonstrates the right actions, tracks the child’s motions, and encourages or corrects with words like “good job” or “try again.” If the child does an action that could be dangerous, such as walking into a fire or stepping in front of a car, the screen goes black, the danger is explained and the child is placed back in a safe place and must restart play. Wrong actions never lead to any positive reinforcement, and the only punishment for wrong answers is restarting the play.

Once the child learns to do the action with guidance, he or she can practice alone in the virtual scene and receive verbal prompts and points on a reward screen score bar. Menus allow the caregiver to customize play for the interest and abilities of the child.

A recent pilot study at Emory University, using the Fire Safety game with children with FAS under eight years old, showed most children were not only able to learn the correct responses in the virtual world, but were then able to show the same actions in the real world.

The games are available free at www.do2learn.org (click “Games” on the navigation bar at the top of the page). Because children with FAS often benefit from several different modalities when learning, songs with Flash animations to show each safety step are also available on the Web site.

In addition, there are picture cards and coloring pages that can be printed for reinforcement of the safety rules. The site contains several thousand pages of printable material, including over 380 picture cards, and homework and organizational helpers, as well as information on FAS.

This project is supported by Grant R43-AA13362-01from NIAAA, National Institutes of Health.

Dorothy Strickland is president of Virtual Reality Aids, Inc., the company that is presenting the Web site. Her work using virtual reality to help children with autism began five years ago and has been expanded to this NIH funded project, where she serves as the principal investigator. She holds a Ph.D. in computer engineering from North Carolina State University concentrating in computer graphics, where she is currently an adjunct faculty member.

If your children use this site, we encourage you to provide your comments, feedback and suggestions to contact@do2learn.com.