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Interventions That Work in 2008
From the FASD Wisdom of Practice
Reprinted from FAS Times, Spring 2008
By Jocie DeVries
Before any program or service can be successful, FASD must be diagnosed or at least acknowledged as highly likely and then taken into account as modifications are made. Assessments need to be made as to whether or not more than one “T” issue is involved.
1. Traumatized Teens with FASD
When a youth has problems that severely interfere with daily life or they repeatedly display disruptive behavior without any obvious predatory intent, a complete mental health evaluation needs to be made to determine the cause of the presenting issues, whether it be abandonment, current or past abuse, and/or some other trauma. Standard approaches to healing these memories may work. Some parents report excellent results with alternative/complimentary approaches that work through the subconscious.
2. Tipsy Teens with FASD
Outpatient treatment programs may work for a few teens with substance abuse problems, as long as they are cognitively able to understand it and willing to cooperate with changes in their environments, activities and friends that have contributed to the situation. If not, or if withdrawal is a concern, inpatient treatment program may be necessary. Either way, long term supports, like supervision and accountability will be needed. 12-Step programs can be helpful, if they connect with a trained mentor.
3. Truant Teens with FASD
Diversion programs can be very effective with realistic requirements, good supervision and accountability, with the understanding that if they violate the terms, they will go to jail for a few days. If school truancy is involved, then their academic and school-based social issues also need to be addressed. Many times the reason teens with FASD fail in school is more social/behavioral than academic.
4. Troubled Teens with FASD
When co-occurring mental health disorders are suspected, we recommend a full neuropsych evaluation, done by a neuropsychologist who understands FASD. Follow-up therapy can be provided by any mental health professional who understands FASD and co-occurring disorders. It works best when professionals gather information from and consult with the family in this process. Based on the evaluation and consultation results, professionals can recommend the type and length of medical treatment and/or psychiatric therapy with specific timelines and goals, not to just “stabilize them” and send them home with more medications and no behavioral supports.
5. Treacherous Teens with FASD
Since violence and predatory behavior are not core FASD traits, if this type of pattern exists, a secured facility will be needed to keep themselves and others safe until the co-occurring disorders can be addressed and treated. The most important things to remember are (1) just because they are violent at this time, it doesn’t automatically mean they can’t change with appropriate treatment and (2) it is critical that a family member or someone continues to love them through this process. Unconditional love makes miracles possible!
Riding the Wave of FAS Awareness
By Delinda McCann
Last weekend my family went to the ocean. On the only sunny afternoon we sat on the beach and watched the surfers. I noticed they rode in front of the crest of the wave. As I watched I thought about my life and realized that much of my angst has come from surfing the wave of FAS.
I was raising my daughter before there were parent support groups. She was 15 before Ann Streisguth invited parents to a conference about FAS for the first time. She is a settled adult now with issues that most of the parents I know are not yet facing. The side of this coin that I keep forgetting is that I am a wee bit older than most of my friends who are raising kids and young adults with FAS. I am surfing the wave of knowledge about parents my age with middle aged kids with FAS. (Hint: If you thought FAS with puberty was bad…FAS with menopause is coming.)
This age thing is one of the reasons I love Linda LaFever who is a couple years older than me and Jocie DeVries who is some months older. . It was at Jocie’s “no more chemo” party that the shock of surfing that wave hit me. Linda mentioned something about her stay in the hospital when she stopped breathing. This was Jocie’s party so I was really really downplaying the fact that this was my first trip away from home after having a stroke.
Hey! We are not that old! We sound like a group of octogenarians. We are not ready to retire yet. It will be years before I am eligible for Social Security.* What is going on here?
I found part of my answer to what is happening to me in the office of my stress management doc. The first step in my stress management program was a lesson in biofeedback. For those unfamiliar with biofeedback, the machinery is similar to a complicated computerized polygraph. I was supposed to try to lower the little green lines on the computer monitor by relaxing. I was actually pretty good at this exercise. I kept working at relaxing and the lines went lower.
The doc asked me about my gardens and the lines went lower. I talked about my dogs, poodles, and the lines went lower. The doc asked about my daughters and the lines made a little blip then went lower as I talked about my birth daughters. Then the horrible rat of a meany doctor asked me about my foster daughter. He fully deserved what happened next. The little green lines shot straight up to the top of his monitor and his whole system crashed. Ha!
Can we say I have a huge load of stress from years of 24/7 supervision of my foster daughter with FAS? Yes, I am learning to consciously relax and my blood pressure is not nearly so volatile but it is taking huge sums of money for doctors and a challenging level of self awareness for me to gain a fragile level of health.
Looking at my experience and that of those who were raising kids the same age as mine, the topic of “Family Preservation” takes on a very fundamental meaning. Like Jocie’s and Linda’s families mine came very very close to loosing their mother.
Will the earlier support available to families today help alleviate some of the stress? I am not sure. Support is good but parents are still working 24/7. It is the constant pounding stress of thinking you have solved a problem only to find a new bigger uglier problem take its place. It is the grieving over and over for who the child could have been. It is the battering of our hopes that are raised with one success only to have them dashed again and again by this disability and the wall of ignorance and discrimination our kids face.
My question is whether or not we can intervene at this fundamental level of family preservation so that parents raising children with FAS can live out their full lives with some level of health. What will this intervention involve? Perhaps some research to document that what I am seeing is real. It will involve the collective family experience in finding interventions that work to relieve stress while keeping your eyes on your teenager. Ugh.
It will involve documenting realistic expectations so we do not have our hopes destroyed over and over. It will take community education and awareness to eliminate the barriers of ignorance and prejudice. I think together we can preserve our families at this most basic level. I at least am willing to take on the challenge as long as I can take breaks for my breathing expercises.
*Okay maybe I exagerated a bit on how long it is before I’m eligible for Social Security,
September 9, 2008
A Diagnostic Protocol for ARND
Jocie DeVries
Reprinted from FAS Times, Spring 2008
According to the weather bureau, the community of Everett, WA is the convergence zone of the Pacific Northwest because the sky over that city is where the various weather systems merge after blowing in from the Pacific Ocean and moving up, around and over the Olympia Mountains. After the September consult on FASD and co-occurring disorders, I will never quite listen to the weather report in the same way because the Convergence Zone was exactly the process we experienced listening to 24 hours of workshops from the state of the field of FASD.
I felt a little sad for the speakers who had to come and go so quickly and couldn’t stay for the whole process because they would have loved to hear the sum total of the outcome. It was so full of hope. In this process we heard from the people in the state of Washington who have been–in our experience–the most sensitive to the needs of affected individuals and their families. The take home value for families is that the neurological brain damage of prenatal alcohol exposure can now be medically documented in everybody from newborns through adults.
Doctors Ann Streissguth, Fred Bookstein and Paul Connor from the Fetal Alcohol and Drug Unit (FADU) at the University of Washington shared the culmination of their behavioral research. We learned about the new science of detecting affected adults through MRI imaging of the corpus callosum and we learned that newborn babies who have corpus callosum damage can be identified through ultrasound images of the fontanel. These remarkable discoveries provide concrete evidence of brain structure abnormalities and are critical to psychiatrists and neuropsychologists who have the job of trying to professionally separate those individuals who “only” have mental health conditions like Bipolar, ADHD or Post Traumatic Stress from those who have structural brain damage, developmental disabilities or some combination of these conditions. The Collective Family Experience that we provide, helps the family sort and sift through the child’s family history and behavioral and medical records as a basis to provide advocacy, mentoring or referral, as needed.
Since the consult I have interviewed Kay Kelly, Director of the Legal Issue Resource Center at FADU. Kay works closely with the four specialists who have developed a forensic assessment team (FASD Experts) to diagnose FASD conditions in individuals who are legally involved in serious capital offenses. After the initial intake, Dr. Natalie Novick Brown begins a sequential 4-step diagnostic process that involves an extensive functional and behavioral assessment of the client’s history, including analysis of the extent of prenatal alcohol exposure (Step 1). Some tests (e.g., for adaptive skills) and collateral interviews are also conducted. If the results indicate problems due to fetal alcohol damage, Dr. Brown refers the client to Dr. Paul Connor for neuropsychological testing (Step 2). If his results also indicate the likelihood of FASD, all data are provided to Dr. Richard Adler, the team’s psychiatrist, who does a physical exam of facial abnormalities and growth deficiency.
After reviewing all data, including reports from Drs. Brown and Connor, Dr. Adler renders a diagnosis (Step 3). If the diagnosis involves FASD, Dr. Fred Bookstein conducts a computerized statistical analysis of the client’s corpus callosum. (Step 4). If damage is found, a case can be made for FASD as a primary factor in the client’s criminal behavior. Once the entire process is complete, the team testifies about their findings in court. FASD Experts is the only known diagnostic team in the world that specializes in forensic assessment of FASD within the legal context and one of the few assessment teams that specialize in adolescents and adults with FASD.
According to the Collective Family Experience, this type of process* is the most efficient and cost effective method to diagnose both FAS and ARND that there is to date. The convergence of this body of information gathered at the 2007 consult is a state of the field that is hopeful and helpful to families.
* For similar diagnostic criteria and protocol, see FAS Times, Spring 2005, p. 9, or the Appendix of our photo book, Nurture: The Essence of Intervention for Individuals with FAS for a review of an article published by Dr. Eugene Hoyme and his diagnostic research team.
Preparedness: Advocacy Tips from the Experts
Victoria McKinney
Excerpted from FAS Times, Winter 2003/2004, Discovering Survival Skills
On several occasions we have gathered parents and professionals together for the purpose of learning from each other by sharing the most positive and effective ways of working and living with FAS/E. The following is an outline (a small sample) of the last 12 years of conversations, retreats and meetings with the most tenacious, determined and wonderful parents and professionals I have ever had the pleasure to call my friends.
For me the best advice I ever received, came years ago from a wonderful elderly advocate with a disabled child. She said, “Dear, don’t you ever let anyone tell you NO. You just walk away with a smile on your face and consider them a dead body. Step over the dead bodies and go on.”
I have learned so much from others on the front lines, I think it is time to share a few highlights for effective advocacy. But they only scratch the surface. Please share what you know about getting services in the following system(s) and we will all benefit.
EDUCATION (This is the largest area of complaints from families all over the U.S.)
> Early Intervention: Get young children affected by prenatal exposure into the early intervention programs and fight for all the services that are available, including occupational therapy, physical therapy, speech, etc. These services at this young age promote brain growth and that is very beneficial for infants with FAS/E.
> School Personnel: You may need to educate the school personnel yourself. Don’t think it ends with the teacher–all school personnel need to be educated (even the bus driver). Because of confidentiality laws, many of the para-professionals (who spend more time with our kids than the teachers do) are not allowed this information. Everyone should be involved in the IEP process and a special invitation for the non-classified employee to attend it will promote more success in the educational program.
> Special Education Services: Students can qualify for Special Education under the category of “Health Impaired” with a diagnosis
of neurological damage from prenatal alcohol exposure. The Health Impaired category recognizes neurological disabilities or impairments. It is critical the individual with FAS/E be in this category, so their disability is understood as organic brain dysfunction instead of willful disobedience.
> School-to-Work Transitional Services (beginning no later than age 14): A majority of kids with FAS/E have peaked academically by this age and should be in a life skills or vocational skills program.
There are some great resources in almost every state that will help you to understand the federal IDEA laws that protect our vulnerable kids. We have the PAVE organization here in WA. To find the sister organization in your area, just call them at 1-800-5-PARENT. Also, an entire issue of FAS Times will be devoted to education in the near future.
MENTAL HEALTH
> Ask for an Independent Evaluation and fight for a Neuro-Psychological Evaluation. Not many mental health providers are educated on issues of prenatal alcohol exposure, so it is imperative you find someone who has had a background or training in this area. A neuro-psych evaluation will pick up the discrepancy between their verbal ability and their functional ability and will highlight areas of strength and weakness.
> Seek Providers Willing to Commit to Family more than 1 year. Providers have to be willing to commit to the family and child for at least 1 year to 18 months before they start to really “get it.”
> Discover the Appeal Process & Exception to Policy Procedure: Every system has an appeal process. If your disabled child is denied services, get the denial in writing and learn the appeal process. Also an exception to policy can be made in some cases, but you need to ask for it in writing with copies to more than just one person. We recommend the supervisors of your caseworker and the head of the agency be included.
® Maintenance vs. Treatment: For us, as families, we understand there is no cure for FAS/E, so let’s be realistic and talk about maintaining the individual and family. Treatment implies you’re going to fix it and we know that will not happen.
HEALTH CARE
> Early Diagnosis. The sooner the child is recognized, the sooner the family can put into place the appropriate and realistic programs to stop the onslaught of secondary disabilities as outlined by Dr. Ann Streissguth in her 1996 Secondary Disabilities Study.
> Trained or Knowledgeable Clinician (Pediatrician): Find or seek trained medical professionals in your area. This does not have to be a specialty clinic. A knowledgeable pediatrician who will really listen to you can be the cornerstone of success for families.
> Intervention is Prevention: The first step in prevention is making sure the most vulnerable, our daughters and sons, with FAS/E do not produce another generation of children disabled by FAS/E. Educate yourself (if needed) and your health care professionals to understand generational FAS/E and promote different methods of prevention and birth control.
CHILD WELFARE
> Full Disclosure to Adoptive & Foster Parents: In many, but not all states, there are laws in place that cover this vital need for disclosure of medical and mental health history of foster and adopted children. Know your state’s laws. (Every state has different names for its laws; in Washington State, they are called the Revised Codes of Washington or RCW’s.) You can typically find copies of them in your local/regional library. You may have to quote them in order to get the information that is required for the appropriate and loving care of our children.
> Training for Intake Workers on Screening for FAS/E. Promote this training regardless of the facial features of FAS and/or a low IQ. It’s time these systems got up to date and they start recognizing everyone that has brain damage caused by prenatal alcohol exposure.
CHEMICAL DEPENDENCY
> Screening to identify FAS/E & generational FAS/E: It is imperative that this screening take place or once again treatment dollars are wasted. Our kids/adults with FAS/E look wonderful in treatment and do well as they are a product of their environment; but outside the treatment “structure” they fall apart and cannot even remember the first of the twelve steps.
> Treatment plan to reflect Developmental Disabilities Model: Promote a treatment plan for the individual with FAS/E that is based in a Developmental Disabilities Model with less abstract concepts and more hands-on, concrete methods.
> Long Term support after treatment release: Individuals with FAS/E will not be able to replicate the program of abstinence themselves and will need environments that promote this. This is the reality of FAS/E. This system needs to quit wasting money with “revolving door” treatment.
CRIMINAL and JUVENILE JUSTICE
> Education of Your Community: Be proactive. Several parents have taken it upon themselves to seek out an officer with a mental health background and educate him/her about FAS/E. Then, if and when trouble occurs, that officer with a greater understanding of the disability is called for appropriate intervention.
> Protection under ADA: An explanation that the individual with FAS/E has a disability and is protected under the Americans with Disabilities Act (ADA) has been helpful in the past.
> Establish the need for an interpreter: It is very helpful to establish the need for an interpreter as many of our loved ones get coerced into agreeing to conditions they do not understand. The official term that some parents have used successfully is “advocate interpreter.” If you do not use this type of term, and your child is an older teen or adult, you may not be allowed to be present or participate in court proceedings.
> Neuropsychological Evaluation and Competency Capacity Hearing. These determinations will help in professionally documenting the underlining causes for the behavior of this individual–brain damage.
> Diversion Programs: Ask the court to consider a diversion program when seeking appropriate punishment.
DEVELOPMENTAL DISABILITIES
> Eligibility Door: Unfortunately the system of care most appropriate to take care of individuals with FAS/E has eligibility criteria that require an IQ below 70, so most of our loved ones do not qualify. This is where the appeal process and the exception to policy might help. It is also beneficial to start working with your state policy makers today and get this criteria changed.
> Qualifying criteria should depend on functional abilities rather than IQ: Seek testing and records that highlight functional inabilities rather than relying on IQ.
> Qualifying during childhood: Get the individual with FAS/E qualified for these services during childhood, if possible. It is a much easier transition into the adult systems.
> Traumatic Brain Injury: We have found some great successes using the basics of programs developed for traumatic brain injuries. We don’t need to reinvent the wheel. Get involved with DD community advocacy groups. They can give you some wonderful insights.
VOCATIONAL REHABILITATION
> Eligibility Criteria: Once again, be prepared to use the appeal and Exception to Policy route in this system.
> Educational Involvement Early: Make sure you are working with this system BEFORE your child graduates from high school.
> Testing Done on Functional Abilities: Be sure the vocational testing is realistic and takes into consideration the strengths and weaknesses of the individual with FAS/E instead of just asking what he/she wants to be.
> Long Term: Once again don’t let dollars be wasted on the promise of a 2 week job coach when we as parents know it will take much more long-term support for success in this current, very competitive job market.
Chaos in the Classrooms By Delinda McCann
In September 2007 the Fetal Alcohol Syndrome Family Resource Institute attempted to have a workshop with a focus on introducing a new generation of researchers and their work. We quickly discovered that many parents had burning issues they wanted to discuss so we set up some breakout sessions for them. The burning issues came down to the problems the parents were having with their child’s schooling.
The topic of schooling easily dominates every workshop we organize. It dominates the online lists. It dominates all mealtimes when parents with children with FAS get together. The topic of schooling easily produces more problems than all of the other issues related to FASD put together.
In the hope of making the school/parent relationship less stressful, I would like to offer some universal suggestions that will help schools function more effectively when dealing with their students with FASD. These are all things that can be accomplished without additional funds. Many fine teachers and administrators have used these techniques and found them effective.
1. ACCEPT that FASD is a real medical condition. Since the child was not yet born when the events causing the condition occurred, the child must not be blamed for having the condition. In no way or form should the child be discriminated against for having FASD.
2. ACCEPT that FASD is a lifelong condition of characteristic brain damage that cannot be taught, punished or loved out of a child. The teacher and school staff can only adapt the school environment in such a way as to keep the child safe and provide the optimum learning environment. In other words the school staff needs to set realistic expectations for themselves and the child by doing the best they can with what they have to work with.
3. ACCEPT that FASD is a medical diagnosis not a label. Stupid, lazy and noncompliant are labels. Most people who are diagnosed with FASD are relieved to discover that there is a reason for their difficulties. Please do not try to deny the diagnosis.
4. ACCEPT that children with FASD will come to school with a different set of requested limits from their parents. Just as children with chronic asthma or with diabetes have limits that are different from healthy children, the child with FASD will have special limits. Please respect these limits.
Acceptance does not mean thinking there is nothing you can do to make the school setting better for a child. Acceptance means taking a good hard look at yourself and the student and taking an inventory of the assets and liabilities you both have to work with. Once you have honestly taken inventory you can establish a starting point to begin to build a program of education based in reality.
We find that many of our students with FASD like to live in a world where they creatively reconstruct reality. The peculiar thing is that they respond very well to an environment where the adults are very clear in telling the truth about reality.
Finally be gentle on yourself, on the child in your care and on the family of that child. We are all working toward a common goal of educating our children so they can reach their full potential. It is not the children’s fault that much of their potential has been taken from them before they were born.
Welcome to the FASD Family Preservation Blog. I first heard of Fetal Alcohol Syndrome while watching the 20/20 television program in 1990. I immediately went into shock when I heard Michael Dorris, author of the best seller, The Broken Cord, perfectly describe the behavioral pattern of my sixteen-year-old adopted son. My husband and I had good medical insurance and access to the best medical and mental health treatment in the country, but none of these professionals had ever been able to describe or understand our son’s pattern of behavior. Mr. Dorris was able to cut through all the inconsequential, peripheral medical/mental health symptoms and get right to the heart of what troubles families so deeply: the FASD Behavioral Phenotype. Tragically, Michael Dorris eventually took his own life after trying for so many years to help his disabled son, only to lose him in a pedestrian/car accident on a dark, cold night. My heart still aches for Michael and his family. Evidently being a passionate leader in this field and living with all the glaring publicity (both good and bad) that came along with his book and the TV movie, took its toll. But here at the FAS Family Resource Institute, we have not forgotten the tragic price he paid for blazing the public awareness trail for this behavioral phenotype. When we started our work in late 1990, we asked permission from Michael Dorris to quote the descriptive phrases that he created and he graciously gave us written permission to do so. With this beginning we went on to do many surveys, interviews and parent working retreats to gather, analyze and organize the Collective Family Experience into a body of information that would help affected individuals and families educate their service providers on the most effective ways to preserve their family relationships. The resulting information packets, brochures, books and newsletters are available on this website. But there is more good news for families. Today we are launching a new educational and support initiative called the FASD Family Preservation Blog. It is hosted by one of the charter members of our Board of Directors, Delinda McCann, who is the mother and guardian of an adult child diagnosed with FAS. Delinda is not only intelligent and very effective as an FASD advocate, she has a wit that will keep you laughing and entertained every day. Our mission has always been to help others identify, understand and care for people with FASD and to prevent future generations from having to live with this disability. But the specific purpose of this Blog will be to share and exchange information–directly or indirectly–to preserve family relationships, so that no other family need ever to be torn apart just because they live their lives in the FAS Lane.
Warm regards, Jocie DeVries