Raising Children with_FAS-Donna Dent

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Donna Dent: I am the Project Coordinator for a Research Study at the Marcus Institute that works with identifying children age 3-9 yrs. with FAS and developing educational programs to improve their skills.

chatadmin: Hello Donna, The room is all set.. We're so glad to have you with us tonite

lisa s: Ms. Dent, would you begin by telling us about the FAS research study and what is involved?

Donna Dent: Sure. This is a study for kids age 3-9 years, who have FAS or pFAS and have been in a stable home for about 6 months. We conduct a full comprehensive assessment to confirm the FAS diagnosis and to assess the childs strengths and weaknesses. We then provide all the parents with two 2 1/2 hour workshops on FAS, Advocacy, and Behavior Regulation. Then we take half of the kids and give them one on one tutorials for 6 weeks.

Donna Dent: Then we retest the kids that were tutored with the ones that were not. We test all the kids again at 6 months.

Donna Dent: The point of the study is to demonstrate that with appropriate assessments and customized teaching techniques the children will all improve. Hopefull the one in the one on one tutorial will improve the most. We hope that what was learned will be retained at the 6 month mark. All parentw will be given the full tutorial information after the 6 months.

Elles: Hi, I joined. How do I find out what the questions are? I just see the answers.

lisa s: Ms. Dent, is the study for both biological and adoptive children?

andreas: Can we refer adoptive parents to you if they have adopted children with FAS?

Donna Dent: The study provides free assessments, assistance from a case manager, a special educator to help with IEPs, a doctor's visit, a visit with a Psychiatrist to answer questions about medications and provide insite, and visits with developemtal pscyhologist.

Donna Dent: Yes, Please do. Most of our parents are foster care and adoptive parents.

lisa s: Ms. Dent, what would be some warning signs or red flags that parents may want to look for, if they suspect their child may have FAS?

Donna Dent: They can call me at the Marcus Institute 404-419-4253 or our case manager, Kimberly Stevenson 404-419-4257.

Donna Dent: We will be happy to give them more information and set up an appointment if they are interested. The entire program is voluntary and free of charge.

lisa s: What are some warning signs or red flags that parents may want to look for, if they suspect their child may have FAS?

Donna Dent: The Marcus Institute has a FAS Clinic which is not free - they conduct differential diagnostic evaluations (similar to our initial assessments).

Donna Dent: FAS is primarily diagnosed by 1) Alcohol use by the mother during pregnancy 2) Growth delays - low birth weight, small until puberty 3) Faical features - flattend appearnce of mid face 4) Central Nervous System damage (braiin damage).

lisa s: I believe you may have answered this, but a family does NOT need a referral, they may contact you directly themselves?

Donna Dent: Many other problems may be associated with FAS: Medical (ear infections, allergies, asthma), Feeding problems (weak suck as baby, decreased appetite), Motor development problems (gross/fine moter skills - trouble holding utensils, cutting with sizzors, etc...), Learning/Cognitive problems (arousal regulation)...

Donna Dent: Families may contact me directly. They do not need a referral.

Shannon H: With Fetal Alcohol Effect, the physical attributes are not present, right? Or is this possible with FAS as well?

Donna Dent: Other Associated problems: Mild mental retardation, judgement problems, sleep problems, and attachment problems.

Donna Dent: 1) FAS = Birth defects caused by mom's drinking alcohol during pregnancy. 2) pFAS = a milder form of FAS (not all the full syndrome) 3) FAE or ARND = Alcohol Related Neurodevelopmental Disorder (No physical characteristics of FAS but brain damage (CNS) is suspected.

Donna Dent: All of these terms are sometimes put under the umbrella term FASD = Fetal Alcohol Spectrum Disorder

lisa s: My understanding has been that thus far the medical community is not sure why some babies born to mothers who drank heavily do not show signs of FAS, but...

Donna Dent: We recommend an assessment by a geneticist (to rule out other genetic disorders) and/or a developmental pediatrician with knowledge in this area for a diagnosis.

lisa s: other babies whose mother drank in moderation do. Is this still correct?

Donna Dent: In Its estimated that in Georgia there are about 350 children per year with FAS and 950 per year with Alcohol Related disabilities.

chatadmin: Donna.. What is the ethnic breakdown your'e seeing in this study?

Shannon H: Do you have listings of doctors around the state that specialize in this area? I am thinking of families who might live outside the metro area.

Donna Dent: We don't know how much is to much. We do know that older women who have been drinking for a long time are at highest risk. It may have something todo with the impact alcohol has on the body in general.

Donna Dent: Alcohol not only deteriates many organs but it als prevents the absorption and vitamins and mineral for building a healthy body.

Donna Dent: We see families from all over Georgia. We do have referral list at the office. I don't have them with me but maybe I can get them and post them later.

Donna Dent: Most of the kids we see are almost 50/50 in racial breakdown. Half white, half black and a small percentage of Native American.

lisa s: How long has the study been in place, and what changes have you seen in the children who have particpated in the study?

andreas: Back to the biological affects of alcohol, is it possible that alcohol damages a woman's ovaries &/or eggs?

Donna Dent: We have a small percentage of hispanic (less than 2%). This may be do to a lot of different factors. The Marcus institute has not been able to do community outreach so most of the families have come from medical referrals and word of mouth. We are hoping to change this.

Donna Dent: The Marcus Institute has been in operation for over 15 years. Our study is only 2 years old.

Donna Dent: Alohol damages cells in the body (not only brain cells). It also prevents the body from absorbing the nutrients it needs to rebuild and stay healthy. This includes all organs - ovaries too.

Shannon H: Regarding the theory that children of alcoholics are somewhat predisposed toward substance abuse themselves; is your study able to assess that or has it not been in place long enough to study generational effects of alcoholism.

Donna Dent: We have seen more changes in the families, teachers, and healthcare professional than the kids. We have found they have been craving information and assistance in providing services to our families. They have to our surprise been very receptive to new interventions.

lisa s: Can more than one child from a family particpate in the study? What if a family adopts several children and all need this assessment, can they all particpate?

Donna Dent: This study is only a 4 year study and doesn't look at long term outcomes. We would love to be able to follow-up interventions for these families throught their lives.

Donna Dent: No. Only one chld per family can be in the study. Because they are randomly assigned to the tutoring vs. nontutoring group we couldn' t promise that both kids would get tutoring. We wouldn't put parents in the position of giving one child something and not the other. If you have more than one child with FAS you can still use the techniques you learn with both children. eventhoug only one will be in the study.

andreas: Do you have statistical percentages regarding FAS? Has it increased, decreased in the past few years?

Shannon H: What support groups are available for families with children of FAS in Georgia that you know of?

Donna Dent: No, I'm sorry I dont. Some of the changes in statistical data recently may be more due to recording and reporting procedures than actual increase. In the US it is reported that 1-2 per 100 children have full and more than that have milder effects.

Veda: Hello Donna. Can you tell us if the Marcus Institute will be holding other conferences on FAS in the near future? How was your attendance at the Conference in March...were there more professionals than parents?

Donna Dent: There is the FAS Support group that meets quarterly and has a newsletter sponsored by Betsy Meeks 404-419-4256 and Renn Doyle 404-292-7303 . There is Parent to Parent of Georgia 770-451-5484. Lekoteck of Georgia 404-633-3430.

Donna Dent: The conference in March was a big success. We actually had a over the course of the day about half parents and half professionals (many of the professionals are parent too). Right now we are looking for funding to put on more conferences in the future.

Veda: Donna are there specific books on FASD that your program recommends for parents/professionals? If so, could you provide that to the GA. Center??

Donna Dent: I will get together a list of resources, books, and support services and pass it along to the GA Adoption Resource Center - they can share it with you guys. My typing is not fast enough.

Veda: I will look forward to getting that information and we will make it available to staff, parents, and interested professionals. Thank you Donna.

Donna Dent: We are happy to share information but we don't have the manpower to provide individual consultations. If you go through the Marcus FAS Clinic they also have a team with a social worker and Special Educator that would help families.

lisa s: We only have a few minutes left with our chat expert tonight, are there any additional questions?

chatadmin: Just a reminder for our guest.. please answer the questions in our brief chat survey and submit it before you leave the website.. thanks

lisa s: Ms. Dent, thank you for being with us tonight. You have shared a lot of wonderful information with us.

Donna Dent: Thanks to everyone for joining us tonight. I hope it was helpful.

lisa s: Ms. Dent may be reached at the Marcus Institute at 404-419-4253.

lisa s: Everyone thank you for joining us tonight. Also, please check out the library at the Georgia Center for Adoption Resources & Support. We have some great books to read.

Raising Children with FAS - Donna Dent

Tuesday, the 27th of April 2004