with Keller Deal

Tuesday, the 27th of January 2009

Cindy S: Welcome everyone

Cindy S: I want to welcome Keller Deal with the Kicklighter Resource Center

kellerdeal: Thank you

Cindy S: she is here to talk about Fetal Alcohol Syndrome

Cindy S: Keller would you please tell us a little about yourself

kellerdeal: I guess I can begin...

kellerdeal: free to jump in with questions as i give out information

kellerdeal: I am the Marketing Dir for KRC

kellerdeal: originally from valdosta

kellerdeal: Graduated from UGA with a degree in Child and Family Development

dapper36: - has joined the chat -

kellerdeal: and have been with Kicklighter for 2 years

kellerdeal: so let's get started

kellerdeal: first let me clarify some abbreviations

kellerdeal: FAS- Fetal Alcohol Syndrome

kellerdeal: FASD- Fetal Alcohol Sprectrum Disorder

kellerdeal: FAE- Fetal Alcohol Effects

kellerdeal: FASD refers to the umbrella term that describes any child affected by a mother's alcohol consumption during pregnancy

crysti: - has joined the chat -

kellerdeal: a child may only have a couple of symptoms

kellerdeal: not full blown FAS

kellerdeal: there are other disorders that fall under this umbrellas

kellerdeal: including partial fetal alcohol syndrome (PFAS) a

kellerdeal: etc etc

Cindy S: are there any physical signs?

kellerdeal: Now let's move to topics that may be of particular interest to you

kellerdeal: FAS is the ONLY form of mental retardation that is 100% preventable.

kellerdeal: there can be both physical, mental, and neurobehavioral signs of FAS

kellerdeal: physical signs include...

kellerdeal: growth deficits

kellerdeal: short nose

kellerdeal: w nasal bridge

kellerdeal: thin upper lip

kellerdeal: folds between the eyes aka epicanthal folds

kellerdeal: ther can also be documented central nervous system abnormailiites

kellerdeal: and the presence of discriminating facial characteristics

dapper36: If the chid has FAE will he still have the same effects as a child with full blown FAS

kellerdeal: let's discuss neurobehaviral symptoms

kellerdeal: not necessarily

kellerdeal: a child with FAE may only display one or two characteristics

kellerdeal: for a child to be diagnosed with full blown FAS they must have the following

dapper36: when should the child be tested for FAS? Is it too late to test a 10 yr old.

kellerdeal: presence of discriminating facial characteristics as we talked about

kellerdeal: 2. documneted growth deficits

kellerdeal: 3. central nervous system abnormalities

kellerdeal: all of these symtoms must be present for a child to be diagnosed with FAS

kellerdeal: a child with FAE may only display 1 or 2 of the symptoms

kellerdeal: let's talk about how to deal with a child with FAS or FAE

kellerdeal: consisten routines

kellerdeal: linited stimulation

kellerdeal: limited

kellerdeal: concrete examples when explaining things... may it relate to them

kellerdeal: give them realistic expectations

kellerdeal: provide them with supportive environemnts

kellerdeal: sorry for the misspellings... i hope you can understand what i mean

kellerdeal: and strong supervision

kellerdeal: these kids don;'t need alot of "free activity"

kellerdeal: the problem with the system is that FASD screenings at birth are not routine

kellerdeal: screenings are usually only done with alcohol abuse is suspected

Cindy S: is there a blood test to tell?

kellerdeal: in many cases (I would assume aside from most of the kids you work with) alcohol might have only been used not abused

Kim: - has joined the chat -

kellerdeal: i'm not sure what test method is used on infants.... children can be tested by physical sypmtoms as well as behavior patterns etc

dapper36: my daughter was diagnosed with FAS but when you say they don't need a lot of free activity what does that mean exact? ?

Cindy S: do they routinely screen when drugs are abused ?

kellerdeal: question 2 is easier to anser so i will start with that

kellerdeal: yes... because the effects of alcohol on a fetus are worse than the effects of drugs... if any substance abuse is suspected than a child would most likely be screened

kellerdeal: question 1

kellerdeal: they need to know exactly what yo expect of them

kellerdeal: for example... give them direction of I want you to get 4 plates down and put them at each chair at the table so that when it is time to eat everyone has a plate instead of "go set the table"

jlock: - has joined the chat -

kellerdeal: give them realistic goasl

kellerdeal: goals* *

kellerdeal: telling them that you expect that they try on their homework...not necessarily bring home an A

kellerdeal: they need structure

kellerdeal: does that answer your question clearly? ?

dapper36: Yes it does

kellerdeal: I'm not a mother so it is harder for me to come up with daily examples

Cindy S: what happens if they are given to much free time

kellerdeal: set goals you know they can reach and reward them when they do

kellerdeal: free time and free activity are 2 different things.

kellerdeal: free time is good

kellerdeal: as long as you set boundaries

kellerdeal: example... you can go play in your room until 8pm

kellerdeal: bed

kellerdeal: enforce those boundaries

Judy: can just one or two drinks during pregnancy cause FAS or is cause from ongoing alchol use?

kellerdeal: just one or 2

kellerdeal: just because you have a drink or several deosn't mean it will affect your baby

kellerdeal: differnt for different people

kellerdeal: and there is not enough research to know

kellerdeal: one person may drink once a month and have a FASD baby while another may drink once a week and have a healthy baby

jlock: - has left the chat -

kellerdeal: and you most likely wouldn;t screen for a woman that is not a drug/alcohol abuser

kellerdeal: 80% of children with FASD do not stay with their birth families

dapper36: The child with FAS are they likely to be behind in school or slower at learning.

Cindy S: if the physical signs are present at birth would the doctor or pediatrican screen the infant

kellerdeal: so it is important for the foster care/adoptive care system to know what to do to maximize the growth of these children

kellerdeal: question1: definitely

kellerdeal: they struggle with body language and expressions

kellerdeal: also struggle with understanding boundaries... this can get them in alot of trouble in a school setting

Cathy: - has joined the chat -

kellerdeal: they have ADD ADHD and attention issues

kellerdeal: yes

kellerdeal: to question2

kellerdeal: in order to determine the extent of the disorder there would need to be a screening

Kim: How do these children fair as adults?

kellerdeal: There is no cure or treatment for the disabilities of fetal alcohol syndrome of there are certain protective factors that can be implemented to lessen or prevent the development of secondary conditions associated with FAS.

Cindy S: why is it that 80% of ch

dapper36: When you say boundaries does that mean if I tell my child to stay out of the street and she goes in the street anyway is that same as having trouble with boundaries? ?

Cindy S: children don't live with birth families?

kellerdeal: depends on their nurturing as children and the extent of their disorder

kellerdeal: cindy's question: due to higher needs of parents and children

kellerdeal: they require more attention than typical children

kellerdeal: yes

kellerdeal: boundaries is any limitation you put on a child

kellerdeal: stay seated

kellerdeal: sit still, don't go in street, etc

kellerdeal: any rule or stipulation you give them would be a boundary

crysti: is FAS compounded by a prenatal combination of alcohol and say concaine and/or nicotine

kellerdeal: no

kellerdeal: alchol effects are much worse than cocain heroin and marijuana combined....

kellerdeal: i take that back... it prob is worse but alcohol is the worse of them all

Kim: Do these children as adults learn boundaries?

kellerdeal: there is a lack of research on the subject because most drug abusing parents aren't going to submit themselves to research

kellerdeal: kim, they may... there will be other consequnces as adults

kellerdeal: it has alot to do with how severe there syptoms are as children and how much they are taught as children

kellerdeal: ture vs nurture argumement in essence

Kim: Do you have any Idea what the prognosis would be for one of these children who has been in a good home and nurtured?

kellerdeal: like with any child... if they are not taught boundaries as a kid then they will struggle with them as an adult

Shannon H: - has joined the chat -

kellerdeal: its on a case by case basis... surely can be partially determined by their progress so far

kellerdeal: if they are doing well in the classroom now, and the nurturing continues then they are likely to be fine adults

kellerdeal: as we all know some children are given everything as kids and grow up to be nasty adults... FAS kids aren;t much differnt

dapper36: what kind of problems could they have as adults

kellerdeal: there is no formula to determine how they turn out... just love them and raise them the best we can and pray alot

kellerdeal: the same as they do as children

kellerdeal: attention span issues

kellerdeal: problems with body language and boundaries

kellerdeal: it is estimated that almost 70% of the children in foster care are affected by prenatal alcohol exposure in varying degrees

kellerdeal: from the national org. on FAS

kellerdeal: I have also found how diagnosis is done

kellerdeal: similar to the APGAR

kellerdeal: ach of the four digits are used to rank the severity of the features of fetal alcohol syndrome in the following order: (1) growth deficiency, (2) the FAS facial features, (3) central nervous system damage or dysfunction, and (4) prenatal alcohol exposure.

Kim: As Adults do these children have to have ongoing services, ie help with work and living?

kellerdeal: Each feature is ranked from 1 to 4 on a scale with 1 being complete absence of the fetal alcohol syndrome feature and 4 reflecting a strong "classic" presence of the feature. For example, a 4-digit diagnosis of 3444 would indicate that the child had moderate growth deficiency, significant facial features, definite central nervous system damage and high risk prenatal alcohol exposure.

kellerdeal: sometimes kim.

kellerdeal: like i said there is no formula to determine what kind of adults they will be

kellerdeal: many of them will need extra help... some will not

Cathy: Can you suggest any reading material or books?

kellerdeal: sure

kellerdeal: the national organization on fetal alcohol syndrome has tons of info

kellerdeal: their website is www.nofas.org

kellerdeal: Alcohol, Pregnancy and the Developing Child: Fetal Alcohol Syndrome

kellerdeal: by Hans-Ludwig Spohr, Hans-Christoph Steinhausen - Medical - Cambridge University Press (1996) - Hardback - 307 pages

Cindy S: we only have a few minutes left, are there any last questions you want to ask Keller

Shannon H: Just in case someone wants more information on Kicklighter Resource Center, can you give some information on that as well?

kellerdeal: look for the subject you are interested in whether it be effects, treatment, disgnosis, etc

crysti: all the symptoms you listed have to be present to get a FAS diagnosis, is it "easier" to get a diagnosis of FASD or FAE?

dapper36: Is this considered special ed in the schools.

Cathy: Thanks

Kim: What would you have us tell a parent that is about to adopt a child that has FAS?

kellerdeal: FASD is not meant to be a diagnosis,,, it is simply the term that all the others fall into such as FAS and FAE

kellerdeal: it is easier to get diagnosis of many alcohol related disorders... fas is the worse of them all

kellerdeal: Kicklighter's website is www.krcacademy.org

kellerdeal: u are welcome to call or email me with more questions, etc

kellerdeal: 355-7633

kellerdeal: This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Shannon H: Is that a 770 number or 404?

kellerdeal: depend on the severity of the disability... a child can receive special services from the school system

kellerdeal: 912

kellerdeal: area code

kellerdeal: for kim's question... tell them to do their research

kellerdeal: it will be similar to adopting a child with sever ADD or ADHD

kellerdeal: severe* *

kellerdeal: i really enjoyed this and I hope it was beneficial to you all

Kim: Is there medication for this as with ADD or ADHD?

kellerdeal: FAS and FASD are similar to Autism Spectrum Disorders in that every child is different

kellerdeal: and they may react differently with foster parents

kellerdeal: no medication for FAS

kellerdeal: but doctors may consider just treating the sypmtoms

kellerdeal: and prescribe them medicine for ADD or ADHD... whichever is more appropriate

kellerdeal: 912-355-7633

kellerdeal: my name is keller deal and I am the marketing director... I'm easy to find

kellerdeal: This e-mail address is being protected from spambots. You need JavaScript enabled to view it or www.krcacademy.org

Shannon H: Thank you so much.

Shannon H: - has left the chat -

kellerdeal: you are very welcome

Cathy: Thanks again, good night!

Kim: Thank You for all the information Good Night

Cathy: - has left the chat -

Cindy S: thank you so much for this valuable information

kellerdeal: your welcome and good night