June 2007

• Global conference strikes personal note
• From Research to Practice: FASD and the King County Courts
• Moving abroad with FASD: An interview with Sidney Guimont
• The Invisible Disability

Global conference strikes personal note

by Jan Lutke

The 2nd International Conference on Fetal Alcohol Spectrum Disorder Research, Policy and Practice Around the World took place this March in Victoria, British Columbia, Canada. The conference included 1,200 participants from 14 different countries around the globe. Research presenters ranged from Australia to Africa, Europe to North America.

The many sessions and half-day workshops covered a wide range of topics from law and justice to education, and from interventions in communities with adults with FASD to tactics for supporting women with addictions.

One of the unique features of this conference was the participation of many individuals diagnosed with FASD. On the final morning, we were introduced to 14 individuals aged 7 – 52 who set the expectations for the closing plenary session. The final session, entitled, "It's Our Time - Go Tell the World," showcased a flag-bearing procession of 250 people with FASD and their family members forming a circle around the room to represent the globe. Procession members carried light sticks that represented the hopes and dreams of all of those with FASD, and photomontage videos were shown at two different spots.

Individuals with FASD led the entire procession in and out, and ran the subsequent ceremony, procession and flag ceremony. The flag, designed by Trina Henderson, an artist with FASD, included a globe with superimposed hands of a clock pointing to 9 o'clock while children of all cultures in traditional garb stood together beneath it. The artist explained that the design of her flag represented the fact that FASD is found around the world; the hands of the clock indicate that "it's our time" and also depict the nine months of pregnancy; and the children represent the international nature of FASD. Marcel Gagnon, an adult with FASD who was also a Juno nominee (the Canadian version of the Grammys), composed a song for the final session; he entitled it “Daniel's Song," in honour of a boy with FASD who sat on the stage during the performance.

Flag: designed by Trina Henderson

During the ceremony, a conference flag was presented to a delegate from each of the 14 countries in attendance and to the five attending cabinet ministers from five different provincial governments. Two parents were given flags in memory of their deceased adult children who represented, "all the others with FASD who have died."

The conference concluded with the flag recipients, carrying the flags enmasse, leading out the procession of conference delegates. It was a very powerful and emotional ending to a time of learning and collaboration on FASD issues around the world.

Jan Lutke is the Clinical Research Manager of CanFAS. She has been the former Chair of the National Advisory Committee on FASD to Health Canada, was the founder of the FASD Support Network of BC and of Connections: Serving Adolescents and Adults with FASD. Her family includes 2 biological children and 21 adopted children; 13 of the children have been diagnosed with FASD.

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From Research to Practice: FASD and the King County Courts

By Kay Kelly

The authors of the final report to the Centers for Disease Control (CDC) titled, “Understanding the Occurrence of Secondary disabilities in Clients with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE),” painted a grim outlook for those with prenatal alcohol-related damage. The report, submitted to the CDC in August 1996, concluded that 90 percent of the adults with FAS/FAE had mental health problems, 60 percent had been in trouble with the law and nearly 50 percent had been confined in a jail, prison, drug treatment program or mental hospital. Authors Ann Streissguth, Helen Barr, Julia Kogan and Fred Bookstein made a number of recommendations which they believed would result in a better life outcome for those disabled by FAS/FAE (now called Fetal Alcohol Spectrum Disorders or FASD).

Among those recommendations were, 1) obtaining the services of a state Division of Developmental Disabilities (DDD), and 2) planning for a lifetime of some degree of financial support since 80 percent of the adults with FASD were either not living independently or had problems maintaining employment (Streissguth et al, 1996). For example, those with FASD who cannot support themselves through consistent employment can be eligible for Supplemental Security Income (SSI). These two primary recommendations were informed by the research undertaken on 415 study subjects, all of who had been diagnosed with FAS, FAE, PFAS (Possible FAS), PFAE (Possible FAE) or ARND (Alcohol Related Neurodevelopmental Disability).

Now those research-based recommendations from the CDC Final Report are being followed through a program at the Fetal Alcohol & Drug Unit at the University of Washington in Seattle, Washington. Funded by the SAMHSA Northrop Grumman FASD Center for Excellence, the program is designed to address the problems of those with possible FASD in the criminal justice system. Located in Seattle, the chosen courts are notable for their collaborative, non-adversarial approach to offenders. In these courts – the King County Drug Court and the King County and Seattle Mental Health Courts – there is, for the most part, no disagreement between prosecutors and defense attorneys. Both share the goal of the defendant successfully fulfilling the expectations of the court – Drug Court requires abstinence and Mental Health Court asks for cooperation with treatment. There are skilled social workers and probation officers associated with the courts, and one public defense agency, the Associated Counsel for the Accused (ACA), represents all defendants in these courts.

The King County Drug Court assists those who have been arrested on drug offenses and who are also struggling with a problem of alcohol or drug addiction. In a court-based program, defendants progress through levels of mandated treatment in an effort to help them achieve and maintain abstinence from addictive substances. They can complete the program in less than a year or in more than two years, depending on their success in handling their sobriety. Typically, twice-weekly urine testing is required of all defendants. This is particularly effective in assisting those with possible FASD in maintaining their abstinence. This simple and straightforward method of relapse detection is swift and unambiguous: A “dirty” test is quickly noted and results in the defendant’s return to court to talk with the judge. Sanctions can be imposed and more intensive drug treatment can be instituted.

The King County and Seattle Mental Health Courts assist those who have been arrested on low-level offenses and who are demonstrating obvious mental health problems. In this court the social workers and probation officers assess the defendant’s mental health status and implement appropriate treatment plans based on the defendant’s needs. As these defendants are often homeless, housing and other basic requirements must be addressed by the court social workers, probation officers and the patient’s judge. As with those defendants in Drug Court, successful completion of the court’s requirements results in diversion from criminal prosecution.

One major advantage of these specialized courts in terms of helping clients with FASD is that the court social workers deal with the immediate needs of the court clients, including housing needs, eligibility for state benefits (temporary financial support, transportation, food stamps, etc.) and referrals to drug treatment and mental health programs. But, the recommendations from the CDC Final Report are not among those services routinely put in place for those defendants who may have FASD. The eligibility requirements and application procedures are so complex, and mastering them—particularly as to the Washington state DDD’s requirements—would consume far too much of a court social worker’s time and effort for a single defendant with possible FASD.

The program FADU has developed has goals of reducing recidivism and improving the quality of life of those defendants who have been found to be both prenatally alcohol-exposed and who have impaired functioning, either in the form of alcohol and/or drug abuse or through mental health issues.

To help court personnel identify possible FASD among their defendants, FADU staff provided lunch hour training in the courthouse, and distributed a simple, one-page check sheet of distinctive behavioral characteristics to help court social workers find appropriate referrals. The first question asks about the mother’s use of alcohol; defendants that indicate maternal problems with alcohol and drugs are referred to the FADU program where they can be further assessed. To date, virtually every referral has suggested possible FASD.

Following the initial assessment, psychological testing is scheduled with Dr. Natalie Novick Brown, trained as a post-doctoral student by Dr. Streissguth. Dr. Brown has donated her professional services to the project because of her desire to see eligible individuals with possible FASD qualify for services which could enhance their lives, support their sobriety, reduce recidivism and perhaps reduce their time in jail. Dr. Brown administers the Wechsler Abbreviated Scales of Intelligence, an IQ test, and the Wide Range Achievement Test, Third Edition (WRAT-III), a test of academic achievement. In addition, a test of adaptive behavior, the Vineland Adaptive Behavior Scale (VABS) is administered by a long-time FADU associate, Joan Sienkiewicz. Dr. Brown compiles the test results into a report provided to the defendant’s attorney. With the results then protected by attorney-client privilege, the report can be used in applying for services such as SSI and DDD.

Often, a defendant’s IQ score is above the Washington state DDD requirement of 70 or below. However, even with an IQ score over 70, a defendant can still qualify if his or her academic achievement is three grade levels below the expected level of achievement (ninth grade for an adult) in two academic subjects, and if the score on the VABS is at least two standard deviations below the mean; in these circumstances the defendant can qualify for DDD on the basis of needing the same services as the mentally retarded. No diagnosis of FASD is needed since eligibility is based on functional level. For eligibility for SSI, a diagnosis of FASD can be useful since it helps explain why this defendant cannot maintain employment, the category under which those with cognitive impairments qualify for support. If a diagnosis is needed for SSI benefits, Dr. Richard Adler, a forensic psychiatrist, has offered to donate his expertise in FASD to the project and will examine defendants.

Of approximately thirty referrals, twenty have been tested and eleven have been found to be eligible for DDD services. Four were found to have IQ scores in the fifties, clearly qualifying these defendants for services on that basis alone. Each DDD application requires hours of interviewing the defendant, preparing the forms and assembling mandatory documents (homeless people often do not have a birth certificate or other identification). Additionally, interviews with family members are required in order to prepare an essay describing how the disability was observed in the defendant’s childhood. The process is so labor-intensive and complex that one father of an adult son with diagnosed FASD said, in exasperation, “No one who needs these services could possibly apply for them.”

The value, particularly to the Drug Court, of assisting these defendants in obtaining permanent, life-long services (services that the research shows yield a better outcome for those with FASD) is to extend the stabilizing benefits of the Drug Court after graduation. Relapse is a significant problem, so the services of a case manager – to help the defendant manage his/her money; assist in locating housing, drug treatment programs, vocational training and medical care; and offer skilled help in addressing whatever problems might arise – protects the expensive investment the Drug Court has in the defendant. That the gains made during the intensive supervision of the Drug Court not be lost to relapse is of such importance that the expenditure of time and expertise seems wholly justified. The same rationale applies to those defendants from Mental Health Court, although should they be diagnosed as mentally ill, the DDD will not generally qualify them for services. This could be tested with a diagnosed defendant with FASD, however, since it could be asserted that the mental illness derives from the prenatal exposure to alcohol.

Currently, of those defendants who have been tested and are eligible for DDD services, not all remain in the Drug Court program; some have graduated, while others have failed and are serving jail or prison sentences. It is too early to know if the DDD case manager in combination with the predictable income from SSI will prove protective to a population vulnerable to addiction. Possibly the case manager could be more effective if also given training from the Drug Court in relapse prevention and in drug treatment referral options. A good working relationship already exists between the King County Courts and the DDD staff, so close cooperation between the Drug Court and the case managers should be easily established. This program for Drug and Mental Health Court defendants utilizes research outcomes to devise a new way to use existing services and help them succeed.

Both the researchers and those putting the research into practice are hopeful these programs will, in fact, prevent recidivism and improve the quality of life for those affected from their beginnings by the plight of others. As the Florida Supreme Court observed in it’s 1994 decision in Dillbeck v. State, “We can envision few things more certainly beyond one’s control than the drinking habits of a parent prior to one’s birth.”

Kathryn Kelly has been the Project Director for the FASD Legal Issues Resource Center at the University of Washington since 2001. The project provides assistance to judges, attorneys, parents, advocates and others in cases of individuals with FASD in Juvenile and Adult Criminal Court. Information on FASD and the law can be found at its Web site: http://depts.washington.edu/fadu/legalissues/. Ms. Kelly is also the Project Director of “FASD and The King County Drug Court,” a program funded by the Substance Abuse Mental Health Services Administration (SAMHSA).

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Moving abroad with FASD

By Katy Jo Vasbinder

In November 2006, I had the opportunity to interview my stepsister, Sidney Guimont, who was diagnosed with FAS when she was 14 years old (previous Iceberg article featuring Sidney, reprinted in the Seattle Times, August 14, 2004). Sidney and her husband Nate are stationed at a U.S. Naval Station in Naples, Italy, for a three-year tour. She flew back to the states for a visit to spend some time with family, and graciously allowed me to interview her. Sidney is 31 years old, and has known she has FAS for just over half that time.

Sidney Guimont by Mt. Vesuvius

Katy: When did you move to Italy?

Sidney: We moved to Italy on March 11, 2005. We’ve now been there about half the time.

Katy: Did you start out on base housing or off the base?

Sidney:
Base housing. Basically they have a place called a support site, a Navy support site. And they have apartments. Depending on your pay grid, they require you to start there. And I think it’s a good thing, especially if you’ve never been overseas it’s a nice adjustment. Nate, and I lived there a year before we decided to move out and live on the economy.

Katy: What or who has helped you the most in dealing with daily and or sudden stresses?

Sidney:
I’d have to say like financial stresses, I see those as daily stresses all the time. And Nate and I have finally gotten to a point where we can actually talk and sit down and actually talk about how we are going to budget our finances. Before, I would try and avoid it and he would do his own thing or I would try and take care of all of it and not want to discuss it with him because then it would stress me out.

Katy: So dialogue—you’re both able to do that.

Sidney:
Basically, yeah. Now we are on the same page of where we want to go with our budgeting and our finances and where we want to be at a certain point when it comes to savings. So it’s taken 11 years to get to a point where we can actually communicate about the budgeting because I’m the one that pays the bills. Just… it took patience. And it was hard at first but I finally had to let go of some things. Um…sudden stresses? I don’t deal with those very well. I have a tendency to just let it roll in my head, play over and over and over and sleeping becomes a problem so sometimes I’m up all night. But the good thing is, is that I don’t worry now about that fact that I am stressing about something. I just tell myself, “Ok, this is what my mind does. If I have to dwell on something just let it dwell. It will go away eventually and it’s ok if I only get a couple hours of sleep. It will be made up.” So I’ve compensated a little to live with that.

Katy: What do you think caused the paradigm shift?

Sidney:
Gosh, sometimes I ask myself that same question. What happened? What was this change that just was able to let me let go of the anxiety towards sudden stresses and sudden things happening? I would say I just…let time take its course and I knew that it was going to take years. Everyone knows nothing happens right away in a marriage. As each year goes by in my marriage, something new has shed a light on how Nate and I react to things or how we deal with things, and we notice it and we actually talk about it, and that helps. It was like a break-through when we were actually able to see eye to eye on the budgeting and for me not to get so impatient to want to try and explain. I had it under control with the things I was paying for online and in person, and that I just didn’t want to take the time to explain to him. I finally just got to a point where I could just sit him down and say ok this is what I do, this is how I do it, and these are the certain days that I do it. So the patience just finally came about and I guess the same thing with just…as each year goes by, you should have some years go by with your marriage, I’m feeling more settled with decision making, not as impulsive, and I guess accepting of change. Now of course there is always going to be change where it is going to be rattling but there is some changes now that I’m doing a lot better with that I could not have dealt with 10 plus years ago.

Katy: Is it possibly because you are more comfortable with who you are?

Sidney:
I think so. I really think so. In today’s society I know that it is all about the physical body. You’ve got to be healthy, blah blah, and I know that I don’t fit in that category but for some reason, as I’ve gotten more physically out of shape in my eyes and...just feeling tired and knowing that I need to be just a little more physically active so I could just go for a really good power walk with friends and stuff like that all day without getting tired all day, but at the same time I’m feeling better about myself. I mean it’s like a contradiction. You would think that you would be more unhappy with yourself if you know, it’s like…it’s hard to explain but it’s almost like the opposite is happening. In my eyes I’m physically not where I want to be, but emotionally I’m coming out of my shell more, and I’m making more friends and just being more of a social butterfly and it’s weird, but I’m just letting it happen.

Katy: Well to me, physically, you’re normal.

Sidney:
<Laughter> I’m average like we all are.

Katy: What advice would you give to other adults with FASD who are living apart from the supports they depended on growing up?

Sidney:
Well, if they’re married I’m hoping that they are on the same page with their spouse about their disability and that their spouse wants to be as supportive in finding resources. Whether you are military or not, there’s resources out there for adults and…working as a team, that really helps to locate the resources and to find out how to use them towards your benefit, to help you succeed in whatever you want to do. Whether you want to do as much with regards to schooling or if you want to work… So yeah, just now with, you know, technology and the Internet, it’s so easy to research. Anything. I mean, just a prime little example tonight. I didn’t know where I felt when it came to the blue and red with politics because, you know, I just don’t follow it that closely and so I went and I googled democracy and, or no, liberal and conservative quiz, because I wanted to find out if there was such an online quiz to find out. There were dozens of different types…there were some not so good tests and then there were some really good well-rounded tests and so I took one of those and so I found my answer out. So if I can research, you know, taking the quiz online about if you want to know you are a conservative or liberal, you can most certainly find out…research resources for adults for disabilities…

Katy: How else has technology affected you? Or helped you? Or hindered you?

Sidney:
Well, I have to say, being in my beginning 30s now and watching how technology has advanced from when I was in high school and in elementary and in you know…I would have to say that in my marriage and with communicating I think that technology has really helped because when Nate and I first got married we did not have a computer and emailing was not a huge thing. I don’t even recall ever emailing at all back in 1994, 1995. And so I think that email is a fabulous thing when it comes to communications especially when your spouse is out at sea and you can’t call every day. But there is some hindering things with technology…with technology comes a lot of problems you know, it’s like, with email and Internet is really easy access but there is always chances of it crashing…so it can be frustrating. So it has its good and its bad.

Katy: What are some of your strengths that have developed in the last 5-10 years?

Sidney:
Well, I would have to say…that’s a tough one. Well, one of my strengths is not depending on my husband as much. There was a time when I really felt like I just couldn’t do anything without him. Whether it was the simplest thing of going to the store. It wasn’t because I physically couldn’t do it, I was just afraid to do it by myself. When we were first newly married and he went out on deployment I hermitted quite a bit and that little one bedroom apartment was my security blanket but as the years have gone on and I’ve pushed myself out that door to venture out on my own and I’ve had jobs since. Living on the East Coast and getting a job there and doing it on my own even though he was there with me and was working, really just pushing myself to become more of a whole person and that, you know, I’m who I am and Nate is who he is, and yes, we are a couple but…I don’t need to depend on him for everything. And now that I am living in Italy, I’m just really proud of myself that I haven’t taken two steps back. I’m the one that wanted to live out on the economy and I’m surrounded by people who don’t speak English. So it’s not scary, I guess, being in a place where a lot of people…where there is a foreign language. It’s frustrating that I am of an age where learning Italian is a bit more difficult because I’m set in my ways and the way I was taught. I didn’t take a foreign language in high school. So it’s having to learn as an adult –it’s much harder as learning as a child.

Katy: So talk about life in Naples, what keeps you busy, what are some of the hardest things you’ve had to get used to, what you enjoy the most…

Sidney:
Well, when we first got there it’s a culture shock. If you have never been overseas or if you’ve never been to another country, it is a culture shock. For me it lasted a month and a half to two months. And jet lag for me, it was not really that bad. It really wasn’t that bad. And every new thing that I saw, it was fascinating. So that was the good…I loved seeing all of the new things. Just the signs alone. Each time—you know, reading a sign. You know, learning what two c’s together, how it’s pronounced, versus one c… And so I still, to this day, I will be driving and I’m like “Succivo” and “Casal di Principe”. You know, it’s just “K’s” in odd places. They just sound so neat when you say them and practicing how an “e” sounds, how an “i” sounds and so forth. That’s always fun. That’s ALWAYS fun. Um…Since I don’t work. And what…the system is with the Navel Support Site and the Italian owner of that land, we [the U.S. military] have a contract with him and his multi-business corporation that our government hires so many Italians to work in the Exchange and the Commissary and the bowling alley….all of the facilities on the support site [U.S. military base in Naples]. So, there is a ratio that has to be met, and so as a navy spouse it’s a little more difficult to get a job if you’re looking for a non-GS 13 job.

Katy: What is a GS 13 job?

Sidney:
A GS 13 job is somebody who was had many years of training in that field, college degree, master’s degree…So you have to have a lot of experience basically. In a GS job you need to have experience. I’m certainly not a GS as I’ve never worked for the government. I have only worked out in the civilian vector, and you know, in veterinary services, which has nothing to do with the military. So I will only apply for jobs like the gym for being a recreational aide, the golf course, or the Commissary or the Exchange. And so, the jobs are a bit difficult in a place where I’m at. So I have found that I’ve made some really good friends and I do have one friend who is working now, but I have another friend who just has a baby, so it’s visiting friends um… Now that I live in a bigger place, home maintenance is a very big thing in Italy. If you don’t keep up on the home, every other day… Being in Southern Italy, the dirt in the air is everywhere and it gets into your home and it just covers everything. So, maintaining the home is a job in itself, especially if you are living in kind of a big home. So, a lot of just upkeep and going to the gym, wanting to work on my heart and you know, make sure that I live into my 70s, 80s, or 90s, you know…working on the cholesterol. And just, also I’m going to…I didn’t do this last year just because I wasn’t ready but there are daily tours to Rome, to Pompeii, to Mount Vesuvius, Herculeum, to Sorrento. I mean, you name it. And they’re really cheap and you meet at the support site and hop on a bus; they’re guided tours, so in one week’s time I could do a tour each day if I really wanted to. And so I’m going to start doing a little on my own. Now I’m not going to rely on Nathan, because I know I can do that on my own…I really want to do the Herculeum Mount Vesuvius tour. And those are all Tuesdays, so there are always tours I can go on. So I do have time on my hands, but there are things that I can do to fill those, I guess. And I also just started going to the Protestant Women’s…the chapel group, which is on Wednesday mornings, I believe. So, I want to start getting involved with that group.

Katy: That leads to one of my other questions. How has being involved with your church changed your life and how you deal with life’s struggles?

Sidney:
It has changed immensely. When we lived on the support site still, we had some cross-door neighbors—they weren’t right next door, they were across the hall from us, and they were very nice. Ron and Tracy, and they had been telling us about that they go to a Bible study every Tuesday night and that the hosts were really nice and that if we ever wanted to accompany them, then that would be great and that they lived out in…Caranaro. Um, and so we happened to run into them one night and said we would love to go with you on Tuesday night, and what time do you leave… And so the very first time we went to Bible study and I met Larry and Patty H. and immediately just felt the warmth and just…I didn’t feel pressure, I didn’t feel hounded, I didn’t feel like I was being put on the spot of so, “What is your history about…in religion and blah, blah, blah,” I just felt welcomed and Nate felt the same thing and ever since then, and oh, and of course, at the same time Ron and Tracy were just about to be transferred out, back to North Carolina. So they transitioned us in and they were transitioning out and ever since then it’s just been wonderful. Patty and Larry are a wonderful, wonderful fellowship couple that have definitely changed my life for the better because I now know without a shadow of a doubt that there is a God and that He is watching over me every step of the way. You know, even some of the, you know, little things of, you know, procrastinating on something that I knew I needed to have before I flew out here. And I, at the last minute I realized, oh my goodness, I procrastinated, it’s my own fault and my husband said, “You just need to pray about it. You need to pray about it, and if God wants you to be able to, you know, be able to get on that plane without taking an anti-anxiety medication because of your fear of flying, then that’s it’s, you know… He knows you can do that.” And so I know that God has been with me every step of the way, even with my fears He has just been right next to me, telling me that, you know, you’re going to get there okay, and you’re going to get home okay, and I’m seeing it, and it’s just…

Katy: So, the story is that you didn’t take your medicine, and you didn’t have your appointment?

Sidney:
…When I had forgot to make an appointment with my doctor to discuss anti-anxiety medication for flying and when I have tried to do it at the last minute they couldn’t get me in because of the holiday coming up, and so I got really scared and I called Nathan and he said, “Well, let me, you know, let me talk to some people.” He said, “But you need to sit down and you need to have a long talk with God and you now need to tell him that you’re scared and that you know, that you need his help in this matter.” And, I did. I just prayed and I prayed and I prayed. And He answered my prayers because I…my doctor had called and said that he had just put the prescription in… if God didn’t want me to have…I, I honestly believe that if…if He wanted me going on that plane without having any medication to help ease the anxiety, then, then my doctor would not have been able to call. He would have been too busy, and Nate would not have been able to get through to who he needed to talk to and I just would have had to, to take a deep breath and do it. And I would have done it…

Katy: So you mentioned an anxiety medicine. What are some of the struggles you’ve had to deal with in the last several years as far as medicines go?

Sidney:
Well, as a teenager I dealt with depression and stuff but medication really… I had talked about it and a counselor I had been seeing… We really thought at that point in time was not a really a good idea but as I’ve gotten older it has become very clear that an anti-depressant/anxiety medication is definitely needed because I had my first anxiety attack in Maryland before I flew out to Italy...Panic attacks are no fun. Especially when you don’t even see it coming and you’re not even in a state where you would think that you’d think you would have a panic attack. Panic attacks happen at the most oddest times. Especially when you are at complete rest, and the next minute you think that you need to go to the emergency room because something is wrong. And you’ve got somebody telling you, “There’s nothing wrong with you, there’s nothing wrong with you.” But you are literally scared to death. That you’re, that you’re gonna die or that you just… Something’s wrong and you just don’t know what it is. And your heart is racing and your senses are at the extreme to where noises and then, then you know, after the fact you crash. And it’s an awful, awful feeling. And I had never experienced that before so when I did go see a counselor, and they said that’s, that’s what you had, I’m just like, “Why? Why?” I was watching a movie. We had just gotten back from Florida. I wasn’t anxious about anything. They said, “You don’t have to be. At that moment in time, it can be sub conscionable stuff that’s just down at the surface. I mean, you’re about to travel, you know, to another country, I mean, and even though you…at that point in time you weren’t nervous, you know, it comes out in those odd ways.” So, having to be on an anti-anxiety/depression medication is difficult at times because…because you’re always worried about the side-affects. And I’ve done a lot of research on the one that I’m taking. And…it’s made a difference. I honestly believe it’s made a difference. So…I know that it is something that is going to be a part of my life.

Katy: Going back to the military, your mom taught you early on how to be a self-advocate. How has that helped you as you’ve had to deal with the military doctors?

Sidney:
Well… to stand firm on the information that I have and that I know about. And if I have a doctor, a military doctor, that has no clue about Fetal Alcohol Syndrome or the information that I’m trying to relay to them…I have to be assertive. And at first it wasn’t easy because I just kind of wanted to take a step back have somebody else deal with it and I can’t always do that. I have to be the one to stand up for what I need to have done, you know, medically. I just…I need to stand up for myself and be assertive. And I’ve been lucky. I’ve had a couple of doctors in the past that um, were a bit closed-minded, but I knew that ok, well, with primary care managers…doctors in the military, you can always switch. So, if I happened to come across some very closed-minded doctors, bye-bye. I’d go to another doctor until I’d find a doctor that is willing to listen to all the information that I have and you know, get the help that I’d need for whatever that may be, at that point in time. So… And it’s getting better as each year goes by because doctors are being better educated now. Each year as it goes on more… And facilities are opening up, more informational parts of their practice…so…they need to keep doing that. They need to, you know, be updated constantly on what’s out there and so…and I’m noticing that.

Katy: Can you say how military is structure for you?

Sidney:
Well…the structure that I see in the military, for me is the medical structure. I understand how tri-care works. There is the financial structure. And there is a sense of bond in the military. There’s a bond in the army, there’s a bond in the marines, and there’s a bond in the navy. And I’ve been in it…I’ve been connected to it for eleven years now. And it’s just…it’s a great foundation, you know. And being transferred to another…another duty or station or another billet, that bond will be there too, and so there will always be a foundation that the military provides. Whether it housing, financial, medical, friendship, groups to join…it’s been…

Katy: What are your thoughts regarding children and how has that changed in the last ten years?

Sidney:
Well, when we first got married I wasn’t sure if I wanted to have children, and…but my husband thought that he really wanted to have children. He wanted to have them while he was still young, because he says that…but as we’ve gotten older, I have been more to…I’ve now, being around more babies and friends that have been having babies and it’s just…I want to have children someday and now he’s more on the line, you know, seeing the young toddlers, going, “I don’t ever want to have kids.” So we’ve been playing it back and forth and… we’re on the same page to where we know we don’t want to be away from our family when I get pregnant. So we’re of the understanding that once we get back home, that…um…if we’re still willing to try and if it’s meant to be…if I’m meant to be a mom, then that will happen. And so if…if I’m meant to be a mother and if Nathan is meant to be a father then God will provide.

Katy: What brings you hope and joy in life?

Sidney:
Um…seeing Nathan smile and seeing him as happy as ever, you know. And being with Nathan—it gives me hope and joy every day, knowing that I’ve found my soul mate. And when my Jasmine, my cat Jasmine, comes up on my lap and gives me a hug—that just…joy, pure joy, because I know that that’s just unconditional love from a cat. And the same with my kitty, Hayden. He’s the same way. And family, just…I have really found, being away from my family, when I come back for a visit, how much I’ve missed my family. It’s just incredible. And um, so knowing that I have such a great big, wonderful family, being able to…the hope and joy to come back and settle back in my home state [Washington], which I love, you don’t really realize how much you miss your home state when you…until you are living in a foreign country. And…so…yeah…family and…and…just family.

Post-interview note:
Sidney has been employed since February as a part-time recreational aide at the Navy fitness center. She and Nathan have joined three bowling leagues. In August they will move to their next duty station in Yokosuko, Japan.

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Two months ago, the author below contacted the Fetal Alcohol and Drug Unit in Seattle, wondering how she could tell the world her story. One of our board members suggested that she submit an article for Iceberg. This is her story.

The Invisible Disability

By Alyssa Valley

Fetal Alcohol Syndrome is a disease that is running rampant not only in America but other countries as well. Yet, very few people have heard of Fetal Alcohol Syndrome. Why is that?

One reason I believe is that Doctors tell you that it's okay to have a drink. When in all reality it is not right to have a drink while your pregnant. That one drink that is suppose to "make you feel good" just did a lot of damage to your baby's developing brain. However, I think your attention has been spent all on the baby, but not enough on the
children and adults living with Fetal Alcohol Syndrome. Yes, babies are important but those of us living with our daily life with Fetal Alcohol Syndrome need attention. All kinds of people come up to us and say " I know how you feel". When realistically they do not. They do not know the feeling of frustration, angriness and overwhelming feeling. All this no one understands, even if they say they do. I firmly believe that the only people that can truly bring help to us are those that have it.

The reason I have entitled my article "The Invisible Disability” is because that is what I call Fetal Alcohol Spectrum Disorder. A lot of people will look at me and never dream I have any issues. That is a really big problem, because people will come to expect things if they do not know I have problems. A lot of people have talked with me and they say "You would never know you had problems". My reply to that was " Yeah I know and that’s a problem". People do not know the other side of the coin. The side where I can not always remember to take a shower at times, can not take my vitamins. No one sees that side. No one sees the side that gets overwhelmed and shuts down, or the side that breaks down when I have to make a decision.

That is one particular reason that I have decided to spend my life bringing awareness to Fetal Alcohol Syndrome. I know how it feels to have a life of constant frustration. I know most or not all of how they are feeling. I know of one way to cut down the frustrations and I have seen it working in my own life. I believe that if we start to do this then, it will help improve the lives of those of us trying to live our daily life with Fetal Alcohol Spectrum Disorder. The reason that so many of us are so frustrated is because we see others doing things, and we can not seem to do them. We feel totally worthless, but in reality we have not been given the chance to find something we are good at and enjoy doing. Most of my life or not all of it I have felt useless, I didn't feel needed at all. Everyone needs to feel needed and that includes those of us with Fetal Alcohol Spectrum Disorder. So, I personally believe that finding them something they are good at and enjoy doing will make a huge difference. Like i said earlier in my article all they need to do is to feel needed. Once that happens it will make a difference.

You may be wondering how I know. Well, I am twenty-two years old and I have Fetal Alcohol Spectrum Disorder. I found out I had it about a year ago, and believe me it was good to find out what was wrong. I spent most of my life being made to feel like a guinea pig. I was diagnosed with Autism, ADD, ADHD, depression, anxiety disorder and many others. Then I was given Ritalin and Mellarill. Nothing at all seemed to help. I spent most of my life so frustrated at my life, everything in my life and myself. I was about ready to give up and attempted it several times. My mom sent me to psychiatrist after psychiatrist and they all claimed to know how I was feeling. I have stated over and over again that no one understood. I believe that in order to help those of us with Fetal Alcohol Syndrome, you have to know what they are feeling.

If we take the time to find out what we with Fetal Alcohol Syndrome can do we can help. I have ran across several people who are struggling because they say they can do things, but they can't. So they get angry when someone tells them they can't. Instead of saying you can't and leaving it at that, you should instead find them something they are good at and enjoy doing. I know this will work and I think it should be tried. Even if it means starting a group where those of us with Fetal Alcohol Syndrome make crafts. Then we can find something they like to do. I know that if we try this we can make a difference.

We really need to bring awareness to Fetal Alcohol Spectrum Disorder. That is what I plan to do. My goal is to make life easier for those living with Fetal Alcohol Spectrum Disorder.