Arizonaís Town Hall Meeting on

Fetal Alcohol Spectrum Disorders

  

NEW! [Photo Gallery] NEW!

 

Testimony

 

Tucson, Arizona

October 18, 2003

 

 

Federal VIP Panelists

 

        Jill Erickson, Public Health Advisor, Division of Services and System Improvement, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration (SAMHSA)

        Dan Dubovsky, FASD Specialist, SAMHSA FASD Center for Excellence

 

 

Arizona VIP Panelists

 

        Teresa Kellerman, Director, FAS Community Resource Center; Parent

        Honorable Jerry Freddie, Chairperson, Health and Social Services Committee, Tribal Council, Navajo Nation

        Linda Lopez, Arizona State Representative

        William J. Stanton, Director, Dependent Childrenís Services Division, Arizona Supreme Court

        Joanne C. Phillips, Deputy Associate Superintendent, Exceptional Student Services, Department of Education

        Ric Zaharia, Assistant Director, Division of Developmental Disabilities

        Georgia Butler, FAS/Maternal Child Health Consultant, Phoenix Area Indian Health Services

        Candace Shelton, Senior Native American Specialist, Johnson, Bassin, and Shaw

        Pauline Haas-Vaughn, Senior Quality Assurance Specialist, Healthy Families Arizona

 

 

Orientation of Testimony

 

        Ann Waller, Meeting Facilitator, FAS Family Resource Institute

 

 

Testimony

 

Larry (Adoptive Parent of a Child With FAS):  We are much honored to testify at this meeting and to be able to participate in this meeting. Iím gong to testify for Rick, my foster son and FASD-affected son. He was born to an alcoholic mother. There are issues very important to his future success. We support his mental and physical health during this process. It has been determined that he is mentally retarded. We requested vocation skills and employment opportunity training in his next school semesters. He has a job pushing a broom; it is not rewarding to him.

 

He needs services that include his Navaho culture. Barriers include the need for an education support system to help him on the job site. They need to develop plans at the local community colleges to create programs for special education students. They need vocation development. He needs support from the individualized education plan (IEP) committee. The waiting list for the vocational training is a long, long process. He needs programs for him when he graduates from high school. I appreciate you being here, and we need help with educational and informational services. (For more detail, please see written testimony.)

 

Panel Questions and Answers

Linda Lopez:  What services have been helpful?

 

Larry:  The State of New Mexico has a program to help in the summertime. But more importantly, guidelines for the services he receives are not always adhered to.

 

Linda Lopez:  What do you mean?

 

Larry:  The school does not have enough special education teachers to allow them to meet the service requirements.

 

Dan Dubovsky:  Rick, what would you like to do when you grow up?

 

Rick:  A train engineer running those big old trains.

 

Dan Dubovsky:  So a program that would let him work with trains would be helpful?

 

Larry:  Yes, he spends a lot of time at the tracks and the train station. He talks to the conductors. They are all really nice to him.

 

Bob:  Iím a retired IBM electrical engineer and a recovering alcoholic. Thanks to God and Alcoholics Anonymous, I havenít had a drop of alcohol in over 28 years. I was a drunken bum. In my last year of drinking, I twice came out of blackout and found myself in jail. One charge was driving while under the influence, and the other was public drunkenness. Alcoholism is often called a disease of denial; this is similar to FASD.

 

I have always loved children. I have four children of my own. Itís their honesty and innocence, and they are just loaded with potential, most of them. But our alcohol-damaged children are robbed of this potential. Itís tragic. A couple of years ago, I attended an open house at the FAS center in Tucson. I met John and Teresa. I remember I took John outside to see my truck. We got along fine. John is very likeable. The statistics on FAS/FAE were eye opening. I canít understand how they can be ignored, yet they are. Teresa showed a slide yesterday showing the incidence of the various birth problems. I wanted to be of some use. I thought my efforts would be directed toward establishing mandatory FASD education; this is still an open item. I also felt then, and still feel now, that if I could free up Teresa from caring for John, she would be able to use that time for FASD activities. And thatís what is happening.

 

I donít like the idea that John is excluded from many activities for a young man his age. It bothers me that driving a vehicle, doing whatever he wants, going someplace unsupervised, and other things are not available to him. I do enjoy my time with John. I drive John to work three times a week and, on occasion, we do exciting stuff like visit Home Depot, Ace Hardware, the leather shop, and other places. Iíve let him loose a couple of times, and the results were not good. I wanted him to parachute in tandem, and we watched them do that, but he wasnít ready. He did meet a young woman named Bambi and wanted to try strapping himself to her but not go up in the air. Just kidding, John! John did go on a glider ride and was well behaved, and it was a thrill. We also did some leatherwork and built a radio. He enjoys that kind of stuff.

 

John has love in his life, which is great. There is also Sheena, his lovely fiancť, and of course, his mother, Teresa, not related to Mother Teresa. But the conversations on the ride to work are mostly about blowers and weed eaters; he knows all the brands and features. John takes kidding very well. If we are next to a police car, Iíll ask John to ask the cop if he wants to race. Or if a woman is smoking in an adjacent car, Iíll ask John to tell her to stop. Itís a New Jersey thing. John has remembered things that I forgot and, on occasion, he corrects my pronunciations; heís tough but fair.

 

My opinion: A woman could be forgiven if she has one FASD child. If the woman has another FASD child, she should be fixed. This will never happen, but thatís the way I feel. Also, the father of a child should be held responsible for their support and care. If they donít carry out their responsibilities, they should get fixed. One strike, youíre out. There should be a facility where the father can earn child support money if he is not finding a job. This makes sense to me. (For more detail, please see written testimony.)

 

Abby:  My name is Abby, and I have FASD. I really need a job. In high school, they taught me a job: housekeeping.

 

Vicki (Abbyís Mother):  Abby has been very successful. I was at school almost every day to make sure she was successful. She academically leveled out at age nine. Now that she is 21 years old, she does not have a job. Every job opportunity offered to her is not acceptable to her and is under her level of performance. Itís either pushing a broom or separating nuts and bolts. She will be a successful member of society if she is given a chance and the services she needs.

 

Panel Questions and Answers

Linda Lopez:  What are you good at?  What is your favorite thing to do when housekeeping?

 

Abby:  Dusting.

 

Vicki:  She has amazing organizational skills

 

Linda Lopez:  If you had a checklist of what to do, Abby, could you follow it?

 

Abby:  Yes.

 

Linda Lopez:  Are there any other areas that would help you be successful and live independently?

 

Vicki:  She needs someone to help her with financing. She is also very susceptible to peer pressure and very vulnerable to suggestion. She needs support on a daily basis.

 

Dan Dubovsky:  In any of the jobs you have had, has there been anyone there to help you?

 

Vicki:  Yes, she had someone with her, but it only came after a lot of advocacy. She got an aide that stayed with her. After 2 years in her program, she was seen as the best in the program. There were times when her emotions took over and she had to leave the program or job. She qualifies for vocational rehabilitation, but it is a waste of time and energy, because after 2 days on the job, the job coach is taken away. They need to be with them every day or every other day for at least 6 months and actually for the duration of the job. FAS and the executive functioning damage does not go away with 2 days of training from a job coach.

 

Dan (Individual With FAS):  Hi, my name is Dan, and Iím 21 years old. I live with my mom and step-dad. For over the last year, I have been trying to get a job. I had a dishwashing job, but I tended to talk more than I should have, and I lost it. I need a job where I can talk all the time. Iíve had two dishwashing jobs, and neither worked out. I have talked to my mom, and we have decided that I work well with little kids. They like me. They are so happy to see me when Iím at Abbyís house. The kids just love to see me. I would like a job at the local daycare center. When I get money, I blow it. I need help with my money. With my disability, itís hard to be out in the world. I spend my day playing video games.

 

Panel Questions and Answers

Dan Dubovsky:  Dan, the daycare thing sounds great.

 

Dan:  I have an application at home, and I was so busy getting ready to come here that I didnít have time. Itís not far, I can walk or ride a bike.

 

Dan Dubovsky:  You want to live on your own?

 

Dan:  I have a problem with spending my money. I always buy things, then I remember the phone bill and the rent, and Iím in trouble.

 

Dan Dubovsky:  You need help with your money?

 

Dan:  Yes, I need help in order to be independent, someone to give me money to spend and still have money for my apartment.

 

Jill (Special Education Teacher):  There were a few moments this morning when I thought, ďDo I really need to go today? Can I make a difference?Ē Iíve driven twice into town today. At school, one of my students set a house on fire. Another student, 14 years old, already has a baby and told me she felt sick this morning. Is she pregnant again? All these children are affected by alcohol. So I left all the dirty dishes and other housekeeping to come here today.

 

Iíve been teaching since 1977. I read an article in the local paper that said that 1 in 7 women on the reservation drink while pregnant. Iím here today because of the people who love these kids, and teachers are one of them. There are also many not-so-great schools out there. Now our kids are being judged by a multiple question test given in April.

 

I see the same negligence in servicesóa lack of cooperation between systems offering these services. We need more grownups at school. You stand out there when the buses come, and we see those kids. What we do with all the kids helps those kids with FASD. Itís critical that we have education development to train employees on FASD and professionals on site to work with these kids and help the teachers. We need an ongoing intervention group. Once kids are in special education classes and have the diagnosis, that special education should continue. A good program in California called Baby Face is a parent education program. Down the road, this program is going to make a big difference for our kids. We need to start looking at functional and adaptive skills. We need to teach kids their rights and teach parents their rights. We need to teach a positive school climate. When the school is safe, itís easier to learn. The HeartMath Program is a very successful program offered in California. It is an excellent program. Take a look into it. The power of appreciation is underestimated. Just to have someone to listen to you can bring tremendous results. Appreciate the power of what love and appreciation can bring. (For more detail, please see written testimony.)

 

Panel Questions and Answers

Candace Shelton:  You mentioned the Baby Face program. Can you explain, please?

 

Jill:  I think itís a Federal program. The program admits 30 women and their children. It basically provides an educational curriculum. 

 

Candace Shelton:  Are you getting the kids diagnosed?

 

Jill:  Yes and no. We have an Indian Health Service nurse practitioner. We donít really have much help at all

 

Candace Shelton:  Does the nurse make referrals?

 

Jill:  Yes, but it may happen 2 or 3 years down the road. We are spreading the word. 

 

Linda Lopez:  You spent some time on the test given in April, and I have talked to some of the others affected by this testing. Can you tell me what you have found?

 

Jill:  The test is a test!  It tells you what a kid can do that day, but not much more.

 

Linda Lopez:  How does it affect graduation?

 

Jill:  Most of my kids donít graduate. Fifty or 60 go to high school. Out of those students, maybe 20 graduate. The right instrument for measuring education standards needs to be addressed and a new standard put in place.

 

Dan Dubovsky:  One of the things we have looked at is how this test affects a kidís self-esteem and ability to be successful.

 

Roma (Adoptive Mother):  I adopted my son at 3 Ĺ years old. He had been in five foster homes. His birth mother would abandon him for days at a time in her car while she went to the bar and left to party and forgot him.

 

My case manager for my adoption agency said he could have possible brain damage, but he seemed to play just fine with trucks and toys. He broke every scholastic toy I ever bought him. He couldnít stand the fact that he was wrong on every answer he chose. His last foster mom said he could count to 10 and his favorite color was blue. When we would count together, he could get his numbers correct, then he would recite a jumbled mess another time. I accused him of teasing, and he said he wasnít. He would forget his favorite color and say, ďI not know.Ē

 

After only having my son for three months, the case manager suggested I put him in a special needs class. I was horrified. I had waited years to have a child and wanted to enjoy my child. She said it would give him a head start on life. I did as she suggested, and soon the school was calling me about his behavioral issues. They referred him to the school psychologist, and when I met with him, I asked him if there could be something wrong with my son due to his birth motherís drinking. He said no, itís probably due to the abuse he suffered, but he would be just fine, and one day he would just start talking in complete sentences. Iím still waiting for that, 22 Ĺ years later.

 

Just before the adoption finalization, the State realized they had not sent the records to the court. My husband drove to the reservation and retrieved them. I opened the records and read that his birth mother drank during her entire pregnancy and had jumped out of a second-story hospital window while 6 months pregnant, and that when my son was born, he smelled of alcohol. I told our family doctor and asked again if this could have affected my sonís brain, and he again assured me it hadnít. My son had extra teeth, abnormally large joints, a smaller-than-average head, and memory lapses. But according to our doctor, he was just fine. I wanted to believe him, but I couldnít.

 

When my son was at the end of first grade, his teacher told me he couldnít read. I asked how he had gone the whole year without them noticing this. She explained that my son had memorized the 110 words they had learned so that no one would know. They had gotten to larger words, and he couldnít pretend anymore and couldnít sound anything out. We kept him in first grade again, with the teacher assuring me that he would be just fine after repeating first grade. By second grade, he was in learning disability and specific learning disability (LD/SLD) classes, behavioral modification, and speech therapy. During parent-teacher conferences, there were many of them and one of me. They told me if I read more to my son and had more friends over, he would be fine. They blamed my parental skills and me. I went home and cried and tried even harder to help my son. I took him to a counselor, only to have him tell me not to bring my son back, as he didnít understand any of the concepts the counselor was tryingóagain, more frustration and another dead end.

 

About this time, I was taking classes at the University of North Dakota, and during my developmental psychology class, the professor talked about mylenation of the sheaths in the brainóhow sometimes the information processed and sometimes it doesnít!  I felt I was now armed with some outstanding information, so I went back to our family doctor again. He disagreed and said my son was fine.

 

By fourth grade, my son was unable to function in a normal classroom, and he was getting extremely frustrated and calling himself stupid. I went to the school and suggested he work on regular work in the class and then work on appropriate work for his level in his LD/SLD classes. This seemed to make Jordan happier and feel better about himself. In fifth grade, they started posting how each child was doing in math. When I came to pick him up, I saw his name at the bottom of the sheet. I had a little chat with the teacher, and she agreed to remove the sheet.

 

When he was 10 Ĺ, I went to a seminar on teens and drugs in order to prepare for his teen years. Here they talked about FAS, and they were describing my son, and I felt I had just won the lottery. I was referred to the universityís center for education, teaching, and learning. My son saw a geneticist and went through a battery of extensive testing. Finally, they diagnosed him, and what I had known all along was on paper!  The geneticist suggested I read ďThe Broken Cord,Ē which I purchased that afternoon. I went home and read it in one night while locked in the bathroom and sobbed. I cried for my son, I cried for me, and I cried for relief. I was finally exonerated!  It wasnít my fault. That night forever changed my life. Someone had written my life story and had only changed the names.

 

Next was sixth grade, the worst year he ever had. It was the first year of middle school, and Jordan wasnít ready for this!  They required all homework to be done in cursive only. Since he couldnít read the material, I would read the chapter, ask him the questions, print

his answers, and he would turn it into cursive. We both cried that year and for the same reason.

 

In seventh grade, the real delinquency started. He was taken to jail. While waiting to see the judge, I sat there petrified, and Jordan took a nap. The State sent me a letter stating that if my son continued to get in trouble, they could remove him from the home and put him in foster care. Of course, this precipitated an angry and fearful call to them from me. I was prepared to fight to the death to keep my son with me. All my friendís children were doing these wondrous things in school. I replied that my son had not gone to jail that week. I was now grateful for my sonís own unique accomplishments. Soon all his friends were from troubled homes, and they would use my son, and he would get caught, and they went free. He was doing anything to be liked and have friends.

 

Jordan continued school with satisfactory/unsatisfactory grading from this point on. He couldnít learn time, money, or fractions until I showed him how it pertained to him. I was onto something here. I tried to give him life skills, and so did his teachers. Every time he was suspended, it was a nightmare, as that meant that he was home alone to get into more trouble.

 

When he was 16, I read in the paper about a Native woman that, while drunk, was walking from the bar to her trailer on the reservation and passed out and froze to death. I called the tribal police, and they confirmed it was my sonís birth mother. They had found her 4 months after she died, when the snow thawed!  I cried out of anger for her and pity for her and for my son. After running through a gamut of emotions, I told my son. He consoled me but felt nothing. Then I cried more for all of us. We had all lost something in this.

 

Life went onÖmore calls in the middle of the night to pick my son up at the police station. Sleeping was a luxury. I always worried that he would sneak out. At 18, we moved to Arizona. He finally graduated at 19 Ĺ years old. When I told him how proud I was of him, he said, ďThanks, mom, for helping me get here!Ē  It was all worth it. Again, I cried.

 

After that, it all went downhill. An arrest for driving under the influence (DUI), possession of marijuana, possession of burglary tools with intention to burglarize, possession of illegal firearms, two grand theft autos, and an extreme DUI. I had a swat team in my house when I came home one night. I fell apart to the detective. He told me that my son was lucky enough to have someone love him that much and not to beat myself up over it all. Every time I ever talked to my son about something important, he would just smile, and the more important it got, he would just break into laughter. When asked why, he stated, ďI donít know.Ē  And he really didnít know.

 

I called the Arizona Department of Developmental Disabilities and asked for help. They wanted to know if his diagnosis said ďmental retardation.Ē When I told them no, they said they couldnít help me. I asked for suggestions, but they didnít have any. I called his probation officer, and he said the same thing. I felt my son was a little bird with nowhere to land, a child trapped in a manís body.

 

My son is in prison now, because he moved out at 24. He couldnít distinguish the date on his court papers as to when to show up. He forgot to pay fines or got sidetracked on the way to community service. Without me as his advocate, he went to prison, sent there by himself and the help of a new probation officer who was angry that he didnít comply and vowed to me that she would make sure he was punished for this. She didnít care about his disabilities and told me so. I worry every day about what will happen after I die. I should enjoy my grandkids having family dinners, but instead I fear leaving him alone in this world with no facilitation or guidance.

 

I would like to feel, after I am gone and cannot cloak my son against himself and the world, that I didnít let him down and that legislation was passed, that there will be services, places for him to live, and some kind of future other than prison. (For more detail, please see written testimony.)

 

Barbara (Grandparent of a 13-Year-Old):  I am not looking forward to the future. I met Teresa and got a diagnosis at 3 years old, so we have not fallen into some of the traps other parents have. We have special services though the office of developmental disability. Some of the things I would like to see happen include more education. Education is the biggest issueónot just for our children, but public education for the parent who has a child that is having trouble.

 

Iím thinking of advertising money, so that the media can do something sort of like what they do for tobacco and Mothers Against Drunk Driving campaigns. We will have fewer problems, and it will be cheaper in the long run if we provide education for teachers, child protective services, medical personnel, and all the systems we end up dealing with for a child with FASD.

 

We need to have better services, more services, and early intervention. It makes a big difference with these children throughout their lives. If there had been those services, those children would not have ended up in the wrong services. One of the changes is that they are not taking the children out of the dysfunctional homes soon enough. Even those that were born with this, they are not getting the services early enough to make a difference. Another thing that concerns us is that my husband and I are in our 70ís and will not be around to raise our grandson, so we need services for him as an adult.

 

Lois (Adoptive Mother):  I worked for child protective services for 18 years and did foster care for 10 years. I have ten children, two of whom have FAS. Iím a mom. My heart is just so full today for my two children that I adopted. When they were 13 years old, all the bad behavior started to happen. The name-calling started 2 years ago. I didnít see any signs that my home would be upset because of his inability to manage his behavior. The emotional issues of our family are disrupted. We are a Christian family. We donít believe in alcohol and tobacco. I am beginning to understand more, but my heart is breaking more. I worry about this boy and his ability to handle his life.

 

Two years ago, I lost a natural son to suicide. I see this son struggling with the same depression. I worry I will lose another child. We canít live through the loss of another child. I want him to be able to cope as a young man. I am dealing with teachers already, and they do not seem to understand. He was in trouble for 2 days because he forgot to bring back a paper I was to sign. He doesnít understand. He is double-damned. The teachers know of his disability but still donít understand. Another problem is financial. More money is given to the gifted children than to our kids.

 

Our children have a lot to offer. They are fighting every day just to get through. My son killed himself because he found out that day that he wouldnít graduate because he failed a class. I want teachers and others to understand what this does to a child. It is overwhelming. I look at them as they sleep and wonder what today is going to be like for them. Are you going to have that volcano go off inside you, or are you going to call someone a name and go off on them, and the violence begins?

 

Marva and Howard (Military Retirees):  We raised 10 children, and we have grandchildren and great-grandchildren. We received a call from child protective services that two of our grandchildren were going to be taken away. We picked up the boys. For about the first 2 months, the behaviors of the little boys made it very hard to deal with them. We had to send Donovan away. We have William. He is only 20 months old. To look at him, you would see nothing wrong with him. He has not started to talk. This is a new world to us. We need help, because we donít know what to do. We are traditional parents, and the traditional methods we use are not working. We are getting older, and we worry about this little boy. What is going to happen when we leave?  This is a problem that is not going to go away. There are not a few of these kids here and there, they are everywhere.

 

We get funding for programs to stop kids from smoking tobacco. And this is a choice.  These children had no choice. Maybe they werenít educated that it was wrong. I didnít know the problem with FAS. I knew of the divorces that happened because of alcohol, but I didnít now about FAS. I look at these little children and wonder what hell their lives are going to be. The funding doesnít need to come from the government. The alcohol industry needs to be culpable.

 

Panel Comment

Linda Lopez:  Thank you for the last statement you made regarding the alcohol industry and the need for it to put funding into education and intervention.

 

Gail (Reading for Linda, Parent):  I can remember being at a place just where you are today. I was sure I knew how to parent every child. I noticed all the mistakes those parents made with their children. If only they parented this way or that way. Oh, but I know so differently now. Today, Iím the mom that people look at and think they would parent this child differently. They know that if only I would be stricter, expect more, and demand respect, then I would get it. If only it was that easy. You see, today our daughter is a 7-year-old child living in the body of a 15-year-old young woman.

 

Accepting Rebeccaís disability has been an agonizing, grief-laden experience. We have traveled through those rough waters and have adjusted our sails. We have lost a lot of friends. We have been treated as outcasts in the society that we try so hard to help our child fit into. We have felt unwelcome in our places of worship, the very places that we should be able to go for strength and compassion. We almost lost our marriage.

 

We have participated in more therapy, IEP meetings, behavior sessions, and diagnostic procedures than anyone ever should. Her diagnosis has been documented, suggestions have been made, IEPís have been put in place, therapies have been utilized, and still we get phone calls complaining about our childís behavior. She is the only child in the whole neighborhood who was not invited to a Christmas cookie party down the block.

 

Her IQ was 64 as a preschooler. We took her to sensorimotor therapy and speech therapy and tried a multitude of medications. We tested her for food sensitivities and removed all offending foods. She developed a photographic memory, calmed down, and raised her IQ to 78. Ah, wonderful, you say. But no, she didnít qualify as developmentally delayed. The head of special services in our district told us she has ďblown the doors off the expectations for FAS in public school.Ē  Sometimes I wonder if making her look more normal hurt more than helped her.

 

She needs more supports. She needs to be protected. She is innocent but appears in control of her life. She doesnít understand why people treat her badly. She doesnít understand why the whole world is always mad at her. Life is so simple to her. If only they would just see her heart. If only they wouldnít expect her to be someone she canít be. If only they would accept her. She needs developmental disability services with the added ability to strengthen the areas of her brain that are not damaged. She can spell wonderfully, she can write poetry, she has insights into peopleís feelings, she loves God, and she has such a forgiving heart. But she sees the world, experiences the world, in a way that we just donít expect.

 

Through wonderful parent trainings, we have been able to figure out, one by one, the basis of all of her negative behaviors. She isnít willfully being bad. Her brain canít handle sudden change, she needs the world to be predictable, and she needs to be respected and honored and cherished for the person she is. And we, as parents, need support and understanding. We have had to turn our world upside down. I had given up my career. We home school to help recover from the many secondary behaviors caused by being rejected and ridiculed and trying to meet expectations that were impossible for her to meet in public schools. We shouldnít need to fight the letter of the law of developmental disabilities. FAS encompasses far more than just IQ. We need new standards. We need and deserve help. We need awareness and recognition that FAS is a developmental disability that our children and we, as their families, will have to deal with for the rest of our kidsí lives.

 

Raising our kids is emotionally, financially, and physically draining, but we do it with all the love our hearts can muster. We rely on Godís strength, because no human can do this on their own. We have learned to let go of all the promise and hope we had for our babyís future when we adopted her. We have also learned to see the wonderful person that she is. We have come to value all that God has given this child to be the very best that she can be, without judgments, without criticism, with respect for the wonderful human being that she is. (For more detail, please see written testimony.)

 

Gail (speaking for herself):  I have been involved in FAS prevention for a number of years and with the FAS Resource Center since itís inception. There are just a few high points I would like make today. The first is that in my experience working with families and with training throughout the state is the whole issue of families trying to keep their children out of harms way and that the systems that should be in place to facilitate that are, in fact, the barriers for that very goal. Imagine the frustration involved when parents are constantly thwarted in these goals.

 

In working in any area of FASD the thing that we see as professionals and advocates is the complexity of these issues. These children and their families cut across all systems and areas of our society. So if we advocate for just this group or provided special training for this other group it wonít make the significant difference we need. So I hope this is something the panel really appreciates. This complexity.

 

One of the challenges we face in Arizona today is funding. We had limited funding through the Department of Health Office of Women and Children Division of Substance Abuse. They lost their funding. So with that, we lost our very limited funding to do the limited training we were allowed to do and to provide support throughout the state.

 

The only other thing I wanted to mention and dovetailing with what Jill was saying is the need for having trained specialist on site in state schools and agencies to provide resources to people on an ongoing basis. The model I would suggest to the panel is the National Head Start. They recently conducted a Mentor/Coach Specialist Model. So the Federal government brought together in Washington, D.C. 3,000 Mentor/Coaches already within the Head Start system. They then trained 300 Mentor/Coach Specialists who would be on call for the Mentor/Coaches who were in communities. The flow of new information and support goes continuously into those communities. So, I just offer this as a model of how this could be done.  Thank you.

 

Kathy (Adoptive Parent):  The story I have to tell you is why I look so old. In 1969, we adopted a 1 Ĺ-year-old boy in Minnesota from a private adoption agency. We knew he was of mixed race and had food allergies and that his mother graduated from high school.

 

John was easily assimilated into our small family of my husband, my biological daughter, and me. He was walking and talking. The adoption agency worker told us to teach him like we were teaching our other daughter, and he would be just fine. Thatís exactly what we tried to do. In the beginning, things went well. John was charming and had an engaging smile.

 

As time went on, problems developed. We were not able to teach him to tell the truth or not to take things that didnít belong to him. He was behind in his developmental milestones. He didnít learn to read until the third and fourth grades, even though we sent him to special reading programs. Teachers described him as hyperactive. If we could just be better parents, he would grow to be a successful adult. We were frustrated. My husband and I argued over how best to raise him. Early on, we took him to professionals to help us be better parents and raise him into responsible adulthood. They saw John as an enigma. He had average intelligence, but he did not learn. The psychologists and counselors didnít see him as defiant, they just thought he made poor choices.

 

John had difficulty making and keeping friends. He was small for his age. We enrolled him in a private school when he was of middle school age, because he couldnít manage the less structured environment of junior high. He would be changing classes and be required to be more independent and responsible. For the first time in years, we no longer were receiving constant calls from the teachers and the principal. He still continued to lie and steal at home and from our friends, but luckily we had no reports of those problems from his school. At school, he was doing very well. By the time he was in high school, he was beginning to catch up in size with his peers. He desperately wanted to play high school sports, and he convinced us to enroll him in public school, where his sister was.

 

By age 15, he was in the juvenile court system for stealing. He was sent to a residential treatment center and ultimately juvenile prison. John was a stellar pupil at the school he was put into. He was an anomaly, and staff could not understand why this child with so many opportunities was there. After a year, he came home. Within a month of being released, he was put back in the school. He was released when he was 18 years old. He was now an adult and wanted to live on his own.

 

John tried to live independently. Eventually, he was put on probation, which he repeatedly violated. He disappeared for a while. Later, I learned that he had been in prison in another State, and he ultimately landed in prison in Arizona by the age of 20. John had never been violent. His crimes were using peopleís credit cards, forging checks, and stealing from department stores. He had always avoided conflict.

 

After a series of events that would take more time to explain than the 5 minutes I have been allotted, John walked away from prison with another 21-year-old man in the summer of 1989. The rest has been headlines in the Tucson newspapers for years. Itís described in the paper. He was charged with murder and sentenced to death. Two octogenarians were murdered, and John was charged with the crime. He was sentenced to death in 1991. I dedicated the next 6 years of my life to save John from the death chamber. Through this process, I located Johnís birth mother. I learned that she had been a heavy drinker, to the point of blacking out, during her pregnancy with John. He had full-fledged FAS. He wasnít diagnosed until he was an adult. The sentence was overturned. Johnís diagnosis of FAS and some other mitigating factors ultimately spared his life when he was re-sentenced in 1997.

 

I stand here before you today, as Johnís mother, saying that John is not a bad person. He is guilty of a horrible crime. I ask you to consider the crime that was committed against him before he was ever born. I ask you, from various positions of influence and power,

to do the work for prevention, diagnosis,  treatment, and other services for children like John and parents like me.  Please remember and please do what is needed to fund prevention. There is no support system. Thank you for listening. Thank you for what you are doing.

 

Emily (Sister of Three Adopted Siblings With FASD):  My sister has FAE. My brothers have FAS. It is very frustrating and very rewarding. I mean, because of them, I have had to learn patience, love and compassion. Itís frustrating, because one really needs that to live with people with FAS.  They are beginning to, but when you are living with them, and they push your buttons, you get frustrated. I think right now we need prevention, because itís growing. Educate teachers, doctors, and social workers. They have their IEPís, but they donít get followed. The teachers think that mom is just pushing the kids too hard, or they are not trying. But itís really FASD. What is going to happen when they get older, because my mom is not going to be around forever?

 

Michael (Emilyís Brother, Affected With FAS):  I have FAS. I kind of just agree with my sister on educating people. Make FAS education available in high school. I have gone to a lot of classes where they teach you about safe sex and tell you not to take drugs. I talk to teachers and ask them if they know about FAS, and they just give me a blank stare. In a lot of ways, I am really lucky. I have no physical problems, but I am affected in that I donít work well with money, time, and numbers. Itís very frustrating for me, and Iím scared. It is rapidly growing. I like the idea of going to the media, like with tobacco. I see these huge campaigns, and when I see a cigarette, I know what it is doing to my lungs. I see pregnant women, and I wonder if they are drinking and if they know what they are doing to their child. When they have a child, they donít even know what is wrong with their child. My life is difficult. I wouldnít be here if it wasnít. All we have to do is get the information out there.

 

Kay (Emilyís Sister, Affected With FAE):  Itís hard to get by in school, because I canít remember homework. Itís hard. Itís hard to get a job. Iím 16, and itís hard to get a job because they donít understand. So itís hard. I agree with both my brother and sister. I look up to them, and I see how they can help me.

 

Lucas (Emilyís Brother, Affected With FAS):  My problems are that I donít do well in math and itís hard to remember things. One good thing in college is a class called Learning Life Skills. It helps me to be independent and to know things that I will need down the road. Education and awareness are crucial to promoting this cause. If you donít do it, we will be lost. Please help us.

 

Panel Question and Answer

Dan Dubovsky:  Lucas, you said you are learning life skills. Is it a class?

 

Lucas:  Yes. I learn a lot about everyday things, things I will do every day.

 

Suzanne (Mother of Three With FASD):  I want to stress education of young girls and doctors to get pregnant women to stop drinking. Because these kids had an early diagnosis, I was able to educate myself. We need to educate the teachers. I have had disability workers say, ďOh, they had it at birth, but donít they outgrow it?Ē  I have had to put myself between my children and the education system. I have had to convince therapists that I donít need another parenting class. We need adult services. My oldest son is in college, and in another year, my other son will be graduating from high school. Already, they are losing services. Why?  Because their disability disappeared at 18!

 

I have had to pull my kids out of school, because I canít wait 2 years for an answer from the courts. I have attended seminars and done a lot of educating others and myself. I have years of experience in living with children with FAS. We need social services, people in medicine, and hospital and vocational rehabilitation personnel educated in this disability. Education is important to teach them to advocate for themselves, but they have brain damage. Iím 55 years old. What is going to happen to them when Iím gone? 

 

We live below the poverty level. I canít hold a job, because Iím always pulled away from work for the needs of my children. I have tried working at home, but it doesnít work. I donít want to be told again that I need to get a job. I need help. I get more help from family and friends than from services. Most agencies do more harm than help. It has taken a toll on all of us because of all the time I spend trying to protect my children from the agencies that are there to help them.

 

Educate, educate, educate. They are spending too much time on data. Donít spend so much time worrying about the paperwork. Why do you argue about it?  They are growing older. Remember the faces of my children. I donít mean to be totally negative; there are a lot of wonderful agencies, but please help us.

 

Dawn (Adoptive Mother of 6, Including One Child With FAS and One With FAE):  My daughter didnít quality for services for a long time before we were finally able to get her services. If I tell my daughter to put on her shoes and socks, thatís exactly what she

does:  puts on her shoes, then her socks. I have learned to hand her her socks, then her shoes.

 

Her FAE sister mastered these skills years ago. I was told that she is too cute to be in special education. She is bright, she can talk the talk, she doesnít qualify for services. She will become a member of the system of neglect. What happens in the future when she has a baby and leaves him for 6 or 7 days?  To prevent this, we need services for adolescents and adults too.

 

Larry:  My perspective is one that has been introduced. I feel lucky that I am not identified as FASD, because my father drank and drank. I am here to address the agencies and to bring a class action lawsuit against the liquor industries. We saw it done with the tobacco industry and with the Government and Agent Orange. One institution I have also experienced is the education system of Arizona. I know of one individual in the school who thought she was ready to educate these children. After a few days, she was doing nothing but chasing a FASD child around the classroom. She has yet to meet the person who wrote the IEP plan, so she doesnít know what to do with it. While she chases the FAS kid around the class, the other kids are neglected. We need close networking between departments. We have to educate. The vocation education programs, they are there to enhance the employability of the youth. I know of no individual with FAS that is participating in that program. I know of no one at the central office. From my own experience as a counselor, you had to be careful who you have enter the program because of the limited funding. To help the indigenous situation in Navajo country, the penalty for a bootlegger needs to be increased.

 

Louise (FAS Program Specialist):  The Navajo Nation is the only tribe that has a person dedicated to FAS issues.  I am the only one to have this position, and I am proud to have my leader here today from the Indian Health Service. Paternal child health workers need the statistics. I am not getting them there. Is there no hope for people with FAE?  We send them off to the reservation to get care. The doctors need to be certified, and the teachers also need to be educated in FASD. I want to thank all these parents who have adopted our children, who are raising our children. They are loving, compassionate parents. These are our children they are taking care of, and we should thank them. (For more detail, please see written testimony.)

 

Ruth (Reading for Barbara):  Dear Town Hall Meeting, my name is Barbara. I am the adoptive mother of three young adults who have FASD. We adopted two children from the foster care system at 3 Ĺ and 4 Ĺ; they are 11 months apart. We never knew any of our children were affected. We were young, naÔve, and always had hope.

 

As these kids hit puberty, all hell broke loose. We nearly lost our minds until our son was hospitalized and we got some wonderful help from our mental health board for a while. These kids need more than just ďfor a whileĒ; they need help the rest of their lives. They are all-consuming, and just one can take all of your 24-hour day leaving you feeling lost, empty, and crazy. They donít respond to normal discipline and stop getting some kinds of help at age 18. Their disability does not go away at 18. In fact, things get worse, due to poor systems to help them. They need good mentors, job coaches, and medical help with medications. They look so normal that people just think they are lazy or slow. They usually have very high intelligence but cannot use what they learn. By the time they hit their late teens, their parentsí mental and physical health has deteriorated due to the constant, daily stress.

 

Two of our children were on five medications just to help them function somewhat normally in school. The cost of raising these kids has been phenomenal. We hope in the future we can have good group homes and assisted living that incorporate all the many things these kids will need to succeed in society. Otherwise, the cost to society is high, and it is a great loss for these very precious young human beings. Thanks. (For more detail, please see written testimony.)

 

Ruth (speaking for herself):  As a health care professional I would like to add that if at all possible this testimony be shared with the alcohol industry.

 

Steve (Adoptive Parent):  My wife and I are moving from California to Arizona, and it just so happened that we ran into a woman who told us about this meeting. I am happy to be here today. It has been very enlightening for me to be here today. We are the parents of two children who are about 20 years old. Adopted at birth, they had the best medical care, and there was no indication of problems along the way. The records of the mother were sealed. There are two different birth mothers. As the children grew older, the problems began. We had an early diagnosis of behavior problems, but just attention deficit disorder (ADD). A great number of professionals diagnose these kinds of kids as ADD. Now that our daughter is 19 and our son is 20, we need to get a diagnosis. They have IQs of 101 to 102. They slipped through the system, had trouble with the law, and have an inability to understand cause and effect. Over the past 2 months, we came in contact with the mother while she was being put in prison for stealing. We need a diagnosis. We need the records to know what we are dealing with. We need education of doctors. We had a good doctor that diagnosed ADD. She was an excellent doctor, but she should have known. I was disappointed in the workshop that was supposed to be about diagnosis and medical issues, because it was only about surveillance studies. I didnít come to listen to statistics, I came to find out about getting a diagnosis. I wanted to get a diagnosis. Itís hard to get a pediatrician to make a diagnosis. If we can do that, then we can get the services our children need so that we can reconstruct their lives.

 

Mattie (Adoptive Parent):  On behalf of my daughter, 21 years old:  Her mom was an alcoholic with no prenatal care. A neighbor reported her for leaving the child alone.  She was finally taken to the hospital, and they registered her birth. Her mom passed away when she was 3 years old. My daughter has received a 2-year certificate in administration and has now received her driverís license. She is not recognized for the disability, so she doesnít get the services she needs. She was denied further education. She applied for Supplemental Security Income (SSI) but was denied; she was not recognized because she was not diagnosed. She was denied access to a forestry program, because her parents make too much money. We want her to stand on her own. We want the Navajo nation to hire her. Young girls in high school need an advocate. Sometimes we canít find anything for her. Even though she has the degree, she canít find a job, so now she is back going to school. A diagnosis will stand by her and help her.

 

Larry (Adoptive Parent):  Yaaí aaí teeh, with respect to all the members and representatives from SAMHSA and the FASD Center for Excellence. We are much honored to testify before you today at this Tucson Town Hall Meeting on FASD and to finalize a report to Congress and develop a national strategy. Our family expresses the value of appreciation and solidarity to the FASD Center for introducing the series of regional town hall meetings around the United States.

 

I offer my testimony on behalf of Rick, a Navajo alcohol-affected adolescent. He was born to an alcoholic mother in the streets. Today, he is a special education student at a high school in New Mexico. Rick has received services centered on his primary exceptionality as being mentally retarded. He receives daily living skills in the classroom, and he has a behavior intervention plan. We requested a vocational skills and on-the-job training activity to be included in the next IEP, set for December 2003. He receives Social Security and Medicaid assistance and Indian Health Services psychiatry assistance.

 

Rick likes school and enjoys it very much. He does not want to push a broom but hopes for a more meaningful job. He needs Navajo traditional counseling for his inappropriate language and behavior. We would like to recommend activities for him through the high school, such as field trips, family support groups, and special education oversight committee involvement for the families.

 

The IEP committee members need to have a vocational support system for Rick and others. They need to teach independent living skills and visit group homes and job sites. Team members do not need to be territorial but to generate 4-year plans and develop courses at the University of New Mexico for the special education students. (For more detail, please see written testimony.)

 

Eileen (Reading for Gloria):  Peter and I are the adopted parents of an FAS child. Matthew entered our lives totally uninvited almost 10 years ago, with no name, at 7 months old. Life has never been the same since. Matthew was diagnosed at age 4, after a long battle. We were never informed that Matthewís biological mother drank alcohol while she was pregnant. Looking at the big picture, on reflection, if we had known he was an FAS baby and known what we know now, I think we would never have taken him. But in saying, this, I am glad we did not know. Having Matthew has been a roller coaster ride and a life-enriching development for us.

 

Thanks to the constant support of Teresa Kellerman, the Web site she collated and donated has opened up a door for people looking for information and support regarding FAS in the United Kingdom.

 

Our biggest problem is the education system. Believe me, we have battled and battled. It was a struggle to get a statement. Matthew presented no physical disability, so we were refused the support of transportation services. Matthew has a vivid imagination. He needs to be center of attention all the time, and he makes sure that he is. We have no private life anymore. One of the biggest problems is he is so easily led. He is always in trouble and does not understand why.

 

Matthew is now in sixth grade. The school identified a massive problem with out-of-control kids in fifth and sixth grades, so they have grouped all 25 of them together in a class that has one teacher, one special education teacher, and a classroom assistant. Matthew has a hard time at school. He tires very easily when writing and refuses to work. Math is a totally no-go area. No matter what he learned today, he has forgotten tomorrow. Our biggest worry is finding a secondary school that can meet Matthewís needs. Matthew is slowly regressing. He is becoming more rebellious. He copies the other school children. He tends to mix with the wrong set. I can tell whom he has been with by the way he speaks and his attitude when he comes home.

 

Matthew has a problem with noise; he cannot stand high-pitched noises. The vacuum cleaner drives him nuts. He also cannot cope with supermarkets. It is all the noise and stimulation. It sends him into overdrive. We now cannot go into supermarkets. He rips up paper into millions of pieces and also, at other times, makes lots of little balls and bats them all over the house. He even bats them over the fence into our neighborís garden. This does not go over very well with them. One set of neighbors moved away because they could not stand his behavior. They were not very nice either.

 

Matthew is very destructive. He has a very aggressive streak. We make sure all knives, scissors, matchesóanything that can do damageóis locked away. Matthew is happy if we are happy. I used to go off like a rocket, but this is what he wanted, so now I take lots of deep breaths, and I count to 10.

 

He brought loads of love and has given us a challenge. We love Mathew unconditionally. He loves us more. We have identified that Matthew has a passion for horses. He is a good rideróhe has no fear and a high pain threshold. He has been a member of the pony club for 4 years. He does not learn like the other children, but they support him at the stables. Itís mainly girls, which is good, because boys of Matthewís age are the wrong role models. Although Matthew is 10, he really is only 7 to 8 with social skills of 5 to 6.

 

I know this is not what you are looking for, but I would like to highlight the work that is done by Teresa Kellerman. We have been battling for over 4 years to raise awareness of FASD in the United Kingdom, and I donít know what we would do without Teresaís continued support of resources and information. I have no idea where we would be, and FAS would still be locked away in the United Kingdom.

 

Eileen (speaking for herself during her reading for Gloria):  Before starting to read Gloriaís testimony:  I must say that Theresa has a high stack of these written testimonies of people who could not travel to be here today. I had to reject 2 readings because they were so heart wrenching that I did not feel I could read them.

 

During testimony regarding Theresaís work: I just want to interject here, everything Theresa has done is without funding. She is working out of her own funds and out of her living room.

 

After reading Gloriaís testimony:  I am the Director of District 6 advisory counsel on disabilities. The predominate thing I do in my job is school education. It is imperative to know that the United Kingdom is not the only place where FASD ďlocked awayĒ and not known about.

 

We have been here for 2 days seeing doctorsí slides, seeing identifiable things. But of all the kids who were diagnosed at birth with what they suspected might look like FAS, 39% turned out to be FASD. We know that after a few years these facial features fade as our children grow. So it gets harder and harder to diagnose.  But we know one thing. They are real easy to diagnose when they get to be teenagers. They get diagnosed as sociopaths, and they go directly to those services being provided by the juvenile justice system. This is a shame in our society.

 

This is 100% preventable. If it were any other medical diagnosis that effect this many kids, our society would want all the stops pulled out. They need services. The developmental disabilities system needs to recognize this. But most of all every school in this state, starting tomorrow, could meet the needs of our kids.

 

Nita (Reading for Debbie, Recovering Alcoholic):  I am a recovering alcoholic with 19 years of sobriety. I gave birth to my daughter in 1979, after drinking heavily during the early months of my pregnancy. While by no means all women who give birth to alcohol-affected children are alcoholics, many of us are. Alcoholism is a disease characterized by denial and neglect of relationships and responsibilities. Unless circumvented by recovery, it ends in insanity, death, or incarceration. In addition, some studies suggest that up to one-half of the women giving birth to alcohol-affected children have FASD themselves!  Women in these circumstances are not able to speak out for their children; they are not even able to care for their children.

 

Even in recovery, denial is rampant. It is a difficult thing to face the fact that through our irresponsibility, the people we love most cannot live anything close to a normal life. My daughter Michelle has alcohol-related neurodevelopmental disorder (ARND). She has a normal appearance and intelligence. However, she has the social skills, life skills, and impulse of a child of about 8 years old. She was 19 when I began realizing that her immaturity was not due to poor parenting or her rebellion. It was due to the alcohol I drank before I knew I was pregnant.

 

By the time I accepted that she could live independently, she was 22, living on her own in an apartment covered in garbage. I began trying to seek help for her, but she disappeared with a mentally disturbed young man. I later discovered that they were homeless. Before I could find her, he committed a murder in a remote campground and made her help him dispose of the body. She was sentenced to 24 years in prison for her inability to figure out how to stay alive without helping him. Imagine an 8-year-old in that circumstance!

 

She had never been officially diagnosed, which her lawyer and most of my family used as the rationale for not accepting that FASD was a fact and the root cause of her seemingly irrational behavior. I finally pushed until a diagnosis was made. I found that did little to break the denial. There was no problem confirming my consumption of large quantities of alcohol during pregnancy, and there was no problem quantifying her lifelong behavioral and cognitive symptoms of brain damage. But because she has a beautiful face, normal-sized head, etc., she did not qualify for a diagnosis of FAS. While ARND is essentially the ďbrain damageĒ part of FAS, it does not have the visibility (both literally and figuratively) that FAS does.

 

My daughterís lawyer told me that ARND was not a defense, but that if she had FAS it would have been. I was dumbstruck. I asked him if he was aware that the definitive difference between the two was the absence of facial malformation in ARND. He said he had not been aware of that, but it made no difference. I said, ďSo youíre telling me that having a facial deformity is considered a legal defense for criminal behavior, but permanent irreversible brain damage is NOT?Ē  I canít recall his reply, probably due to the fact that I went ballistic at that point.

 

Our society puts an emphasis on physical appearance, so perhaps it is natural for people to focus on the facial features of FAS and view ARND as a lesser problem. Also, there is no doubt that the presence of distinctive physical features makes it much easier to assess and diagnose brain damage caused by fetal alcohol exposure. However, having physically visible effects, which are required for a diagnosis of FAS, does not indicate more severe brain damage.

 

I have had various opportunities, due to the visibility of my daughterís court case, to speak to groups and present workshops on FASD. Often when I am asked to speak to groups working with children, their main interest is in learning how to identify the facial features of FAS. I explain that while this can be a useful ďshortcutĒ for assessing the presence of brain damage in about 10 percent of those affected, its application is so limited that I would rather spend my time giving them keys to detecting the possible presence of brain damage through behavior and verbal expression.

 

I am grateful for the work of early researchers and FAS awareness advocates. Without their work, none of our kids would be getting the understanding and assistance that many receive today. The distinctive physical anomalies that sometimes occur simultaneously with neurological damage were an early key to identification of babies affected by fetal alcohol. As the field grew and gained knowledge, it became clear that the facial anomalies need not be present in order to have severe brain damage. However, the media and most public awareness campaigns continue to focus on FAS, which has excluded some of our most seriously affected kids from that understanding and assistance.

 

Many otherwise excellent videos and other materials present FAS as the primary problem, and the distinctive facial features of FAS as the primary method of assessment. ARND, if mentioned at all, is presented as one of a list of other disorders associated with fetal alcohol exposure. We are beginning to shift the emphasis from an awareness of the visible disorder of FAS to an awareness of the full spectrum of disorders and of the brain damage that is so devastating to those children and their families. I look forward to that change continuing into the future. (For more detail, please see written testimony.)

 

Nita (speaking for herself): I am the immediate past president of the Arc of Arizona. The Arc has a Prevention Committee. From the Arc Standpoint, prevention is imperative so that this does not happen to another family. That the number of children born with alcohol effects be eliminated. That is our desire.

 

John (Individual With FAS):  I work at a plant nursery. It is a vocational rehabilitation program. I have supervision. My supervisor understands FAS. My mom educated him. I am the only one around with FAS who has never been in trouble with the law.

 

What does it take for me to be safe this way?  Supervision by my mom, my mentor, and my brother. What kind of supervision? Twenty-fourĖ7. I have had this job for 5 years. I am engaged and would like to live in a group home. Besides, it is time I give my mom her independence. She needs to have a life. I want my mom to have a life, the life I have taken from her, even though someday, when I get into a residential placement, I think I will have less freedom there than I have at home. I hope my fiancťe could come down and live with me, too. I think I would rather have my fiancťe than any other roommate.

 

Andrew (Adoptive Parent of Three Native American Children, Including Two With FASD):  Thank you for letting me tell my story. The main point of the story is to serve to emphasize the need for prevention of FAS. My name is Andrew. I am the adoptive parent of three Native American boys, two of whom are affected by FAS or FAE. The public needs to be informed that any consumption of alcohol in any amount of time, during a known pregnancy or even possible pregnancy, can have unforeseen, terrible consequences.

 

Back in 1999, my wife Kristina and I decided to bring these boys, ages 13, 10, and 9, into our home as foster children. The three childrenóJonathan, the eldest, Jack, and Joe, the youngestóhad been removed form their Native American motherís home by the State of Arizona due to neglect over 7 years earlier. Consumption of alcohol during two of her pregnancies is suspected.

 

One home, in which the boys had been in foster care for over 5 years, had a rule that the boys were only allowed inside the house for meals and sleep. They spent the rest of their time outside, in a tree house of sorts, or in school. The pattern of neglect continued. The boys were released from this home when the father was killed in an industrial accident, and the mother said she couldnít take care of the boys and her other children as well.

 

Kristina and I adopted Jonathan, Jack, and Joe in January 2001. They told us we would be their ďforever family.Ē  Their psychologist told us he had never seen a better match between adoptive children and parents. A little background on the boys at the time we brought them into our home in 1999:  Jonathan, 13, had low intelligence and ADD without hyperactivity. Also, his mental age at this time was 9 or 10. He had bonding difficulties and few social skills. Jack, 10, had ADD with hyperactivity and oppositional defiant disorder. Jack had average intelligence. Joe, 9, was above-average intelligence and fairly normal, despite multiple foster homes in the past.

 

My wife and I believed we could help make a difference in the lives of these three boys, which is why we adopted them. The boys were placed in schools that were intended to meet their unique needs. Neurological tests on Jonathanís brain showed the activity in the frontal lobe of his brain, specifically his executive function or ability to make decisions, was severely compromised. He had difficulty understanding the consequences of decisions he made and was easily influenced by peers. The boys continued to receive psychological counseling. Kristina began teaching in a small class of seventh and eighth graders in August of 2001. Jonathan was glad to be in her class, where he could learn at his own pace from his mother, who had many years of teaching experience.

 

On September 5, 2001, things took a tragic turn. Jonathan, for reasons no one understands, suggested to a boy from his class that they set about to kill everyone in the house. This included his brothers, Jack, Joe, Kristina, myself, and our other son, Matt. The boy was staying the night after going to school and attending a youth meeting at our church earlier that evening. Jonathan said later, ďThe idea just popped into my head.Ē  The plan was to use kitchen knives, but this was called off. Then Jonathan and the other boy sneaked into our bedroom and took a rifle. The boys drew lots, with the loser having to begin the shooting. The other boy deceived Jonathan into thinking that he had ďwon,Ē so this meant he had to do the shooting. The boys made some noise in their room and, at about 1:30 in the morning. Kristina woke up to see what the disturbance was. When she opened the door, she was shot six times, fatally. Jack and I were also shot in the room.

 

Of course, the question of why all this happened is one which the entire family has grappled with. I have concluded that FAS was a very significant factor in Jonathanís life. The FAS manifested itself in his inability to bond, his low intelligence, ADD, and his inability to make decisions based on consequences. I believe that alcohol use by Jonathanís birth mother during pregnancy was responsible for these problems, and they had the consequences of bringing about Kristinaís murder. This has been one of those ďif onlyĒ stories. If only his mother had understood the dangers alcohol posed for her unborn child, how many things would have been different.

 

Eileen (reading for Noelle):  

The constant nagging

And lots of fits

You yell and scream

You kick and hit.

In front of my friends,

You embarrass me

You make me so mad,

So constantly.

But one thing I know

When I lay down at night

It isnít your fault,

Though it might

Seem like you do things

Just to make me mad

But I see the real reason

And it makes me so sad.

Itís because of the alcohol

It messed up your mind

But not your heart

Because I will never find

A brother quite like you

Youíre unique and so fly

FAS is an obstacle

but not one you canít defy.

óLove, Noelle

 

Nita (Reading for Joyce):  Since giving testimony at the Texas Town Hall Meeting over a year ago, our own eye-opening adventures in the land of FASD have continued. With the arrest of our child as a terrorist this past January for a response he made to an extra-credit question on a world geography test, we have learned firsthand:

 

 

But today I wanted to speak of something more positive, because Iíve already figured out, in the fewer than 3 years of my FAS learning curve, that real help and change from any source will be a long time coming. The world of FASD is too bogged down in argument with itself and politics to move forward.

 

Today I want to speak of the wonderful lifeline that was thrown to me from the State of Arizona when my husband and I first began to search for answers. As many who have heard me tell of the miracle of even having heard the words FAS knows, I just sat down and put them into the search engine of my computer and hit ďgo.Ē  One of the first things I found was a link to the FAS Community Resource Center site, operated by Teresa Kellerman. It was on this site that I saw and recognized the ďfaceĒ of FAS and read the cold, hard facts for the first time, the facts that make you sick to your stomach and scared to death. But, more than that and more importantly, I also found hope. At the time, I didnít know how rare a commodity hope was going to become for me, how different reading about FAS was from experiencing it, but this site shared tools and strategies for success. So I was encouraged by the wealth of support that was available and jumped in.

 

The contents of this site continue to educate and support me nearly 3 years after discovering it. It helps me to educate others. It has given me materials specific to lawyers, judges, teachers, parents, children, and medical professionals that I could share in order to understand their positions and have them understand mine. It gave me Clarence Williamís Science Project, which I always share with everyone. It is one of the most valuable FAS training tools I have found. It keeps me updated on the most recent research and in touch with mothers/caregivers like myself who do whatever they can to sow knowledge and understanding about the disabilities fetal exposure to alcohol causes.

 

I could go on forever about the lifeline that Teresaís Web site has been, and time is a valuable commodity today, so let me just stop here and say thank you. Thank you from the bottom of my heart to the FAS Community Resource Center for being there when we needed you and for continuing to offer that lifeline to others.

 

Wendy:  When I got out of bed this morning, the last thing I intended to do was come here today and testify. I am a recovering alcoholic. What I have heard today has absolutely bogged my mind. It has dismayed and yet inspired me. I want to share some ideas I have to share with you today. I cannot underscore more enthusiastically what others have said today:  education. All my family were alcoholics. When my mother made it into recovery is when I sought recovery. As a result of being in Alcoholics Anonymous and getting a grip on my disease, I have gotten my degree and am going on for my masterís. I have switched my degrees to do social work. There are so few that are graduating into the field of alcoholism. I would like to put in a bid for monies for students planning on going into drug and alcohol counseling. Education grants can be made available so that there will be more public relations. Because of my advertising background, I know about media and public awareness. We need to educate preadolescent girls so that they can make a choice. I canít stress education enough. Thanks for listening. (For more detail, please see written testimony.)

 

Ruben (Native American Health Director and Community Leader):  The use of alcohol by natives is many, many times higher than the national average. One of the things that concerns us is the block grant funds that trickle down to us. We have a population of over 14,000. We signed a contract for $10,000 that is only enough for one person to have a stay in a treatment center. We are asking that there be some requirement for these block grants. We want a share of those funds. We believe in self-determination and self-government. We believe we can do a better job or as good a job as the other agencies receiving funds. There needs to be language in the agreements that requires communication, meaning full communication with the tribe, not just one or two calls. I was not going to testify today, but I felt it was important to mention that today, because there are people here from the Government.

 

Dawn (Reading for Cindy):  My husband and I are the adoptive parents of two boys, a 13-year-old with FAS and a 4-year-old with ARND.

 

One of the hardest things about parenting alcohol-affected children, I found, is how it has influenced my marriage. I often wonder what we would have been like as a married couple without all the stresses and strains of raising children who are so demanding of momís time.

 

The two boys still refuse on a regular basis to sleep in their own rooms, and at times, in their own beds. The 13-year-old with FAS has an anxiety disorder, fears any rooms with doors or windows, and refuses to be alone. The 4-year-old with ARND was so sick the first 2 years of his life that he had to be in our room with a monitorónot too good for marital bliss.

 

My husband, who is a special education teacher, deals with kids like this all day, and then often comes home and tunes out everything or pursues his hobbies while mom gets to deal with everything else. Dad gets to go on weekend trips to car shows in another State, and mom canít leave him with the kids for more than a couple of hours on a rare occasion, when his parents are here for backup support, because he canít deal with the 14-year-oldís behavioral outbursts, property damage, or disrespect without blowing up, too. Nor can he deal with his asthma and allergies.

 

I now just resent that he has a lot of the free time, and I reel that because Iím the capable parent, I get dumped on. Our children are just thatóour children. I know it must be hard to get so little attention and that, at times, he resents it, but I just donít know how to fix it. We get respite every other weekend for 3 hours, but it often gets cancelled. I have tried giving him extra attention, encouragement, etc., but I think my cup is so empty that I am getting to the point where I am just plain mad. I just donít know how to encourage my husband to take on parenting responsibilities that he doesnít really want. Since Iíve taken over so much of the parenting, I have developed high blood pressure. So often I feel like Iím treading water, with my head just above, but if one big wave came, I would drown for sure! Thank you for listening.

 

Brandon (Cameraman):  We were contracted to cover a conference, and I didnít know anything about this stuff. I just thought it was just another job. But what I was exposed to was 3 days of the most emotional and disturbing testimony. I was talking to Jocie during a break to share with her what I thought about what I had heard, and she suggested I give testimony. I didnít hesitate.

 

My mom is a nurse practitioner. She taught nursing. We were raised to live a healthy lifestyle. We were always told not to drink and smoke especially while pregnant, mainly as a means to good health. I never knew the tremendous effects of alcohol on the unborn or what life is like for one of these children.

 

You have to have ďthe face,Ē I heard here today, to get services. How can that be, when I have been educated on the physical, emotional, and intellectual consequences? The face has very little to do with these aspects, especially when it disappears as the child grows. I learned all about how these individuals are affected by this, not to mention the effects on the community and the other systems.

 

Itís going to take a tremendous amount of work, early identification, prevention, and education. For serving all these individuals, there needs to be continued eligibility, and it needs to continue after the age of 18. One thing the mothers of these children need to know before they adopt is that there is a ton of alcoholics, not just here, but in different counties and countries. A depressed, alcoholic woman who is not excited about being pregnant, so guess what?  They drink more.

 

There is another place to start. Make programs available to these women, and punish those women who, once all the programs, prevention, and education is in place, refuse to seek treatment and refuse to stop drinking. We need to take this situation seriously. Thanks.

 

Panel Comments

 

William Stanton:  I was not interested in coming when I woke up this morning. I told my wife where I was going, and she wanted to know why I was invited. As I listened today, I was thinking that this really has an effect on a lot of different people.

 

The reason I went into foster care was because I grew up in the foster care system; my parents were alcoholics. I listen to your testimonies today, and I think of my younger brother. He has all the classic symptoms of FAS. No one knew about FAS back then. My brother currently sits in prison. I hear a lot about the services needed, education, and prevention. We really donít provide services for these individuals. We deal with about 3,000 volunteers across the State. We also have a Web site, and that is how our volunteers are educated, so I want to connect with the other Web sites, such as the one Teresa has, and educate our volunteers.

 

How many of you have seen the movie ďPay it ForwardĒ?  This kid has an idea for a school project about doing one good thing and passing it on. This same idea would work with FASD:  to educate one, and then that person educates another and another. I am glad I came today.

 

Jerry Freddie:  I am from the Navajo nation. I am full-blooded Navajo. I wanted to cover six areas, looking from the outside in, on the current education system and sending children from preschool to graduation from high school to adulthood and onward. There are a lot of people who have love for human life, and I have heard from many of them here today. I see in my own country a family wanting to have a good family, where a child comes into their family by adoption. Grandparents want to create a happy family with their grandchildren. It doesnít always work out. There is a need for a helping hand. Some of these grandparents, two retired from military life, should be having an easy life, and they take on these children, and now they suffer with what is going to happen to the children when they die.

 

There was discussion of funding and the need for the expansion of care facilities, care development, working with businesses, and, in our case on the reservation, the need for partnership and the joining of funding. There are also policies. If there was a liquor establishment or bar, we were told you donít belong there if you are under 21. Then came the stressing of individual rights, womenís rights, the rights of minorities. Policies were created, and there was the lack of implementing of these polices. Anybody can go to a store and buy liquor.

 

For the Native American community, we have our own tradition of caring for our families. The breakdown of the families came from joining in culturalism. We have a lot of our family members, our own Native Americans, coming off the reservation into the urban setting. Some do well, but others get involved in substance abuse.

 

There is a need for education, prevention, and funding. Another thing that is important at this point is the need to discuss the influence television has on our young. It encourages liquor use, violence, and sexual promiscuity. Back in 1950, a principal asked a boy to draw a picture of his family. He drew a corral and a bright shining day with a happy family working and playing together. Recently, another principal had a child make a drawing of his family. The sky was dark, and there was violence: one person killing another, guns. We have got to get back to the happy family. Thank you.

 

Linda (Birth Mother):  In 1982, when I gave birth to my son, nobody knew anything about FASD. I didnít find out about Dan until he was just about 5 years old. His life has been disrupted and his future interrupted. As a child, he was called dumb and a sissy and a loser. As an adult, he has been experiencing the same thing. His life is very unfulfilled. The success he has is winning little medals. He bragged to others when they were teasing that he was the March of Dimes Ambassador for FAS.

 

His phone never rings, except maybe when Abby calls. He dreams of being able to drive a car. He has tried to take the test and has failed it by one point. He is a better driver than I am. He has an excellent memory and often tells me when Iím going the wrong way.

 

He is so vulnerable to peers. I am afraid for him; he canít say no. Someone would walk away with the car. It happened with a scooter and his cell phone. He is such a victim and a target. Society doesnít need protection from him; he needs protection from society. If he had his own apartment, and because he is 21, he could be talked into buying alcohol for others with his money and end up in jail for getting alcohol for minors. He would also lose his apartment.

 

We need to get real. Do you really think those cute posters of mothers loving their big round bellies are going to stop anyone from drinking? Those cute posters with the Indians in silhouette with cactus in the background have got to go. We need to show the ugly, shocking pictures of FASD. We need to go to something similar to what the anti-smoking ads are currently doing, such as showing the gross pictures of lungs and such.

 

Dan needs a place where he can be successful, a place where he can be able to get up in the morning and fry an egg, but he needs daily supervision. Thousand of dollars have been thrown out there for these posters and bumper stickers. My son didnít get any of those monies. Stop dicking around and get serious about this.

           

Panelís Closing Remarks

 

Dan Dubovsky:  Thank you all for your participation.

 

Linda Lopez:  Thank you for the opportunity. I just want to say I am grateful to Teresa for having me here today, and this is not my first exposure to FASD. I have a commitment to you today. I can make sure that the education piece becomes a reality in Arizona. Taxing the alcohol industry and using those dollarsóI believe I can do that, with your help. It is an uphill battle. I intend to take them on again. I will introduce this before the legislators in January, along with an effective campaign. We need to make sure we make an impact.

 

Jill Erickson:  Iím wearing so many hats. Iím happy to be here to hear the testimonies today. I will go back to SAMHSA and advocate for more awareness of FASD in the families that we are servicing. We already pay communities to improve systems of care for children with SED.

 

Another hat is that I do keep close touch with IHS Behavioral Health and we do have a permanent open liaison with Jon Perez and try to coordinate everything we do with IHS.

 

Ric Zaharia:  This has been very instructive and moving. I first heard about FAS about 20 years ago. FAS has two homes in the Federal Government and no home in State government. We can work on finding a home for it here. Two things that give me potential for encouragement: we just got a grant, and Iíd like to see a joint effort to join these families with other developmental disability families. Child protective services has a child come into services between the ages of 0 and 3. There is no early intervention that requires children with a diagnosis of abuse and neglect to be sent for screening. What is happening is State government is restricting its monies around those with severe disability. We all need to advocate against that, because there are those with mild disabilities that need the same kind of support as others with greater disabilities. We need to get money for Teresa.

 

William Stanton:  Thank you for inviting me today. I wasnít sure why I was coming, but a special session starts on Monday. I understand that there is something in there about drug and alcohol abuse and parents. Please take a look at it. From where I sit, my commitment will be to a conference in May for childrenís services. We will have something there to educate people on FAS. I will have Teresaís site connected with our site to educate our volunteers.  We have one training session, and we will ask people to come up with a means for people to access that education.

 

Joanne Phillips:  FASD needs to be addressed with seamless services from womb to the tomb. This comes at a time when they are trying to cap the services available to those with disability. Thatís going to fly in the face of what we are trying to do here. We live in a difficult time where monies are scarce, and we need to combine strategies. We need to be held accountable for high expectations, and we need to be accountable to those children with FASD. We need to help the adults. We have seen children, both drug-addicted and FASDóit has not changed in 25 years. We need to get in your face just like we do with tobacco, with a seamless system to educate the medical professionals and people in the criminal justice system. So we have a big task ahead of us, and part of that is education of medical professionals and social workers. We need to have people adept at diagnosis. We can demand that our agencies provide training. We need to work on a seamless system and not let people duck out.

 

Georgia Butler:  Thanks for letting me be here today. I have worked in FASD for many years and provide education to Head Start. I get calls from parents who canít find a job and a 25-year-old mother who doesnít know how to take care of her baby. We need to be able to identify adolescents and adults. A lot of the talk was aimed at services for children; we need to focus on the moms. We donít have a lot of treatment centers that take children. We need programs like Birth to Three in Seattle to help these women work with their children and connect with their children. We need to focus on the mothers. As we have heard many times today, if moms didnít drink, we wouldnít have these children. We need to focus on all areas. I enjoyed listening to the children today.

 

Candace Shelton:  Thanks for having me here today. I work primarily with Indian country. FAS doesnít have a home. SAMHSA has made a committee to work with those in Indian countryó558 tribes. We did 10 tribes in our survey and found the same problems. There has been a cut in training and technical assistance. My problem is that they want to make a change in Head Start. There are no coordinated services. Today was very moving. I enjoyed listening to young people. If people could just hear your stories, more services would be provided.

 

Pauline Haas-Vaughn:  I also just want to second what everyone has said here today. We need services for mothers that have had FASD children. One thing this has reinforced for us today is that we have visitors that can impact our training focus in their areas. One of our areas of focus is to serve prenatally. We have introduced a bill into the legislature to be able to work in prevention.

 

Teresa Kellerman:  When I was asked if I wanted to be a hostess for this town hall meeting, I didnít really know how much work it was going to be. I appreciate all the help from my volunteers. Studies of birth mothers show that most of them are alcohol affected themselves. The ability to function sexually is one area that is not affected.  One community I visited implements a treatment program where the mother is placed into the foster home with her children, where the foster parents can model healthy parenting for the birth mother, and the children are not traumatized by separation from their mother.  Arizona is one of only seven states identified as having a statewide FASD coordinator.  We are the only one that is not funded.  Our FAS Center (FAS Community Resource Center) here was recognized recently by the U.S. Senate when a resolution was introduced asking the president to designate September 9th of every year as National FAS Awareness Day.   We struggle without funding, but we will try to stay together and keep working.  I listen to testimonies like this every day. The parents are only telling you a part of the story.  It is hard for them to share in a public forum all the struggles and challenges they face with their children, but they can share their painful experiences with another parent that they can trust.  I am committed to continue to help these families Ė I care about them and their children. 


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