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Home Contact Understanding Fetal Alcohol Disabilities |
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“We all take
different paths in life, but no matter where we go, we take a little of
each other everywhere”
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Understanding Understanding FAS and it's Effects The following information comes from a conference sponsored by the Hawaii State Foster Parents Association and Catholic Services to Families held in the fall of 1994. What is FAS? FAS (fetal alcohol syndrome) refers to a pattern of birth defects that may develop in children whose mothers drink alcohol during pregnancy. FAS is characterized by facial abnormalities, low birth weight, mental handicaps or learning disabilities, central nervous system dysfunction (such as poor coordination, hyperactivity, attention problems), and varying degrees of damage or malfunction of body organs. What Is FAE? FAE (fetal alcohol effects) refers to the effects of prenatal exposure to alcohol on children who exhibit some, but not all, of the problems found in children with FAS. FAE is not a less severe form of FAS, but a child with FAE does not exhibit all the physical abnormalities of FAS. FAE is harder to diagnose, but is more widespread and can be just as debilitating as FAS. FASD IS:
General profile of developmental skills It’s important to realize that not all children with FASD have all of the following characteristics, nor are these characteristics unique to FASD. FAE is a medical diagnosis that can only be made by a trained physician. This list of characteristics can help guide parents to professionals familiar with FASD. Infants are usually small in height and weight. They may be jittery and tremulous, such weakly, have feeding difficulties and erratic sleep patterns, and exhibit increased irritability. They may have difficulty getting used to stimulation and be slow to reach developmental milestones such as walking and talking. Pre-schoolers are often short and "elf-like" in manner and appearance with "butterfly-like" movements. They can be excessively taIkative or speech-delayed. They may have severe temper tantrums and difficulty making transitions. They can be hyperactive and oversensitive to touch or other stimulation and can have attention deficits, fine motor difficulties and developmental delays. They are often unable to comprehend danger and don’t respond well to verbal commands. Early school year children are often hyperactive, distractible, and impulsive and have memory difficulties. They are usually affectionate and interested in those around them, though they often lack social skills to make friends or stay away from strangers. They have trouble with transitions and predicting consequences of behavior (cause and effect). Developmental deficits may result in academic problems such as the "flow through" phenomenon, in which information is learned, retained, then lost. Poor performance may seem deliberate. Middle schoolers and adolescents reach plateaus in academics and daily functioning. There are increased problems with attention deficits, poor judgment and impulsivity. They are easily influenced and victimized. Reading comprehension is poorer than word recognition, and there is difficulty with math concepts. These youngsters are at risk for serious life adjustment problems. How Does Pre-Natal Exposure to Alcohol Affect the Likelihood of Mental Health Diagnoses Do kids with prenatal exposure to alcohol (and other substances) have higher risks for mental health diagnoses? Yes. Names such as ADHD, Depression, OCD, Autism Spectrum Disorders, RAD and Attachment Problems, Developmental Delays and the rest of the alphabet soup of diagnoses may be in a child's social history, or may be in the child's future and not known at the time of adoption. Is it scary to think about this as you plan for adoption? You bet it is. Should this turn you away from adoption? NO! Whether adopting domestic or international, infant or older child, you should be aware that these issues may quite likely affect your child to some degree. Just because the social history does not say "Prenatal Exposure to Alcohol or other drugs"... always assume there is a high likelihood of prenatal exposure to substances. If I adopt as young as possible, will I lessen the risks of mental health problems for my child? Not necessarily. One of the things I stress is that ‘Younger does not mean easier. Younger just means we do not know as much.’ Some of the hardest children I know were infant placements. With older children, we know more, we can do assessments that are more accurate. We know more of how they are developing. I find that the diagnoses occur earlier and are more serious for the children who have had prenatal exposure, trauma and losses early in life. All of these things affect brain development. Many medical providers may not be willing to diagnose or even treat young children with medications. Change providers! Be very aware of depression in late elementary and early Junior High. Even for children whose only diagnosis is ADHD, especially in girls, depression emerges in adolescence as an additional diagnosis. Newer research is showing the different ways ADD/ADHD manifests itself differently in girls than with boys. So, what can you as a parent or potential parent do to prepare yourselves and help your child grow to be the most functional human being possible? Empower yourselves with the best pre-adoption training you can. However, the learning will not stop when you finish your last class. Think of building a family through adoption as a lifelong journey of learning. Here is what you can DO as you adopt... 1. Get the VERY BEST history on your child you can. Have the social worker look at child protection and court records with a fine-toothed comb for any indications of existing mental health histories. Chemical dependency and alcohol use are often self-medicating behaviors masking mental health issues. Look up the Medical Assistance historical record in your state to make sure all of the clinics the child ever visited are noted. How many vaccinations has the child really received? Birth information from the hospital files should be reviewed. Sibling history can also be very relevant for your child. Remember, later siblings usually have increasingly obvious effects of pre-natal alcohol exposure. 2. Get the earliest and most competent assessments and intervention possible. Talk to other parents and social workers, and find out who really can work the best with your child. 3. Advocate with your health care provider, school district, early childhood education, and preschool. Educate yourself. "Home schooling" happens 24/7... so make it work for you and your child. You are your child's most constant teacher. 4. Provide the greatest environment for emotional stability possible. BE with your child. Fewer transitions are better. Constancy, consistency, structure, and predictability will empower your child and allow their energy go toward mastery, not coping. 5. Supervise more carefully than you would with other children. For safety yes, but also for exposure to influences that these children may not be able to filter in the same ways that other kids can. 6. Consider a variety of interventions to help the child function to their maximum and train the brain to work as effectively as possible:
7. Consciously focus on ways to encourage attachment. Prenatal exposure alone can cause difficulties with attachment. When we add in separations, loss, and trauma , adopted children always have a higher likelihood of attachment problems. Do you have competent attachment therapists in your area? Use them. Some wonderful books are available that address attachment and adoption. If you are able, plan to reduce work hours or take maternity/paternity leaves. 8. LEARN... we are learning more and better ways to work with prenatally exposed brains everyday. You cannot do it all yourself. You may have to teach those who are working with your child. 9. GET SUPPORT from those who know! Find other adoptive parents and other parents whose children are challenged by brains and bodies that do not regulate themselves well, those children who may look normal, but who have developmental delays or gaps. 10.Get as much support from the adoption assistance program as possible. Find out what benefits your child may have before the finalization occurs. Sometimes you can get more services before finalization. 11. Consciously teach coping skills, "decompression" skills, self-regulatory approaches and self-awareness to kids. Teach them to hook up their feelings in body and mind with the words. These are the tools for mental health for all of us. The job of any parent is to help their child grow into the best they can be. Even if our adopted kids may face an increased likelihood of challenges, we can still find creative ways to help grow and develop them using a teambuilding approach. Parenting is always the most challenging thing we can do as adults and definitely not for sissies. Find the humor in everyday small things. This will carry you through almost anything. As a friend of mine once told me, if you do not have a sense of humor now, you better go out and get one. Parenting through adoption is rewarding and definitely worth it. Your lives will be enriched in ways you never imagined. Cathy Bruer-Thompson Attention Deficit vs Fetal Alcohol – How can you tell the difference?
Making the determination between ADD/ADHD and FAS/FAE is critical in order to establish appropriate expectations and treatment directions. Source: FAS Times, Summer 1997, ARC Northland, 201 Ordean Building, Duluth, Minnesota 55802. e-mail arcdu@aol.com
Is it
that the child won’t? or Is it that the child can’t? Beliefs dictate behaviors. The belief that many primary learning and behavioral characteristics which may reflect the underlying neuropathology associated with FAS/FAE are the result of willful, volitional or intentional behaviors often leads to punishment of these symptoms. Inadvertently, this may in turn result in the development of an array of secondary defensive behaviors. The chronic lack of a good ‘fit’ between the needs of those with FAS/FAE and their environments may lead to tertiary characteristics of school failure, mental health problems, running away, or trouble with the law. These are all believed to be preventable. The key to prevention is linking the idea of brain dysfunction with presenting behaviors, reframing perceptions, and moving from punishment to support. The shift is from seeing a child as one who “won’t” do something to one who possibly “can’t”.
Diane Malbin, M.S.W., is a clinical social worker, program developer, and consultant who provides information and services for individuals, families, and agencies. Preliminary findings of improved outcomes for people with FAS/ARND based on her work have been presented nationally and internationally. She teaches and consults with parents, educators, health and social service providers, treatment professionals and others across the US and Canada. She is a published author and parent of a child with FAE. FASCET website is located at: http://www.orednet.org/~dmalbin/fascets.html
Factors to Consider for Adolescence and Adults In The Court System with
Fetal Alcohol Spectrum Disorders Accountability Aberrant behaviors have a basis in organic brain dysfunction, over which the individual has little control. Destructive and/or dangerous behaviors are reinforced in a maladaptive environment. It is unrealistic to expect a person with the functional abilities of a child to be accountable as an adult. The person with FASD is often not capable of understanding the system well enough to be found competent. Arrested social development Dr. Ed Riley's research (San Diego State University) shows that regardless of age, regardless of IQ, the person with FASD/ARND may have stunted social development, about that of a 4 to 6 year old child. Delayed emotional development Individuals with FASD disorders may be immature and emotionally volatile. They may go through normal childhood stages along a slower timeline. The emotional development might be at an age level of half the chronological age. Individuals with FASD disorders may not plateau emotionally until age 25 or 30. Communication skill deficits Although persons with FASD/ARND have good expressive language skills, their ability to comprehend may be lower than would be expected, and their inability to read social cues accurately may interfere with their ability to understand the expectations of others. Their writing skills may also be lacking, making it difficult to fill out forms or keep records. Co-occurring conditions Persons with FASD/ ARND are at high risk of having psychiatric conditions, such as bi-polar disorder, clinical depression, Reactive Attachment Disorder (RAD), or Sensory Integration Disorder (SID). Many also have Attention Deficit Hyperactive Disorder (ADHD). Some persons with FASD/ARND are misdiagnosed as having Cerebral Palsy (CP) or Asperger's Syndrome (mild Autism). Symptoms of these disorders often mask the symptoms of FASD/ARND. About one-third of individuals with FASD have some degree of mental retardation, but this is often not recognized, even with court evaluations. Attention deficits Although not all persons with FASD/ARND have ADHD, they most likely have some attention deficits, which interfere with ability to listen, learn, remember, and apply information adequately. Sensory integration disorder Most individuals with FASD/ARND have some degree of sensory integration disorder (SID), due to overload of the senses, causing difficulty with processing incoming information. They may overreact to noises, lights, touch by becoming disruptive, anxious, or even aggressive. Medications Most persons with FASD/ARND benefit from medications to help balance brain chemicals that might be out of kilter. If medications are withheld (as they may be after arrest), or if they are not taken, this greatly diminishes the individual's ability to control impulses and behavior. The most beneficial combination of medications is a stimulant (Ritalin, Adderall, Dexedrine) plus an anti-depressant SSRI (Paxil, Prozac, Zoloft). If the person has underlying psychiatric conditions, then other medications might be more helpful. Pregnancy and paternity The lack of good judgment and inability to control impulses means the person with FASD/ARND is at greater risk of pregnancy or paternity. The use of alcohol increases the risk. The individual with FASD lacks the ability to be responsible for daily use of contraceptives. The individual with FASD also lacks the ability to parent a child, unless there is continual support, as that of an extended family for instance. Sexuality issues The person with FASD may function emotionally at the level of a child. Physiological sexual development is usually normal. This is like putting a six-year-old child in the body of an adult. The poor judgment and lack of impulse control and difficulty understanding social cues results in increased vulnerability, putting the individual with FASD at higher risk of becoming a victim or a perpetrator of sexual assault, or both. Money management Persons with FASD/ARND usually have difficulty with abstract concepts like time and money. Ten dollars may have as much value as Ten thousand dollars. They may not be able to pay bills or follow a budget. They may not even be able to figure change when paying for a $2.99 bottle of milk with a five-dollar bill. They may appear to be intelligent enough to handle this, but can't. Behavior issues Individuals with FASD are generally immature, have a grandiose sense of themselves, but have an unrealistic view of the world. They have difficulty handling everyday stress, and when overwhelmed, they may react by withdrawing or by becoming aggressive. They may have trouble controlling their temper, and may be self-abusive. They may be unable to assess risk or danger, but may have unreasonable fears. They may have difficulty accepting the limitations of their disability. Information processing deficits Information is not filtered properly through the senses, information may not be organized mentally, and there is usually difficulty with memory. Information that can be retrieved at one time may not be there at another. The ability to process information is sporadic and unpredictable. Independence The person with FASD/ARND requires guidance, mentoring, structure, and supervision. Even in the best of circumstances, with good role modeling, effective medications, verbal and visual cues, and a supportive environment, when the person with FASD is left on his or her own, eventually there will be failure due to poor judgment and they will act on impulse without regard for the consequences. The high risk of making the same mistakes over and over require close monitoring 24 hours a day, 7 days a week. Independent living programs are rarely successful. It has been said that "Self-Determination" for the person with FASD becomes "Self-Termination." |
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Foster and Adoptive Care Association
of Minnesota |
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