kathy mitchell - "creating a circle of hope: preventing fasd by supporting women"

7/27/2019 Kathy Mitchell - "Creating a Circle of Hope: Preventing FASD by Supporting Women"

1/18

Speaker: Kathleen Tavenner Mitchell

Topic Title: Creating a Circle of Hope: Preventing FASD by Supporting Women

Kathleen Tavenner Mitchell LivingWithFASD.com Page 1 of 18

2013 All rights reserved. For PERSONAL use only. Not to be copied or distributed without express written permission. Inquiries: [email protected]

Cheryl: Welcome, everyone, to the Living with FASD 2013 Telesummit. If you haven't found us on the Web yet, you can find us at www.livingwithfasd.com. We welcome everyone, whether you are listening when we are broadcasting this live or whether it's later when you are reading it or hearing a replay. When we are broadcasting live, some sessions are followed up with a 30minute listener question and answer session. This is your opportunity to get your questions answered by our experts. You can ask a question in two ways, either by logging into the Living with FASD Facebook group or by using the telesummit interface that the software provides.

You will be able to replay each interview for 48 hours for free after the initial broadcast. We

structure the

events

this

way

to

make

it

possible

for

everyone

to

access

information

regardless

of time zone or financial resources. We hope you enjoy, and invite you to sit back, relax, and tune in to today's interview.

David Gerry: Hello and welcome, listeners and readers. My name is David Gerry and Im your host for this telesummit series called Living With FASD. This telesummit is an informative series of presentations by speakers who have been selected because they have both the up close and personal experience of raising children with FASD and a professional or career perspective on how required support services could best be delivered for families living with family members with FASD.

Today Im delighted to bring your current speaker, Kathy Mitchell. As many of you know, Kathy is the vice president and spokesperson for the Washington based organization, the National Organization on Fetal Alcohol Syndrome, NOFAS. As her resume runs to nine pages, Ive chosen some highlights about Kathy and her career. She holds a master of science degree, is a licensed clinical alcohol and drug counselor with 28 years of experience as a national educator, clinician, and lecturer. Kathy has made many appearances in front of lawmakers to deal with issues on FASD and treatment of women. She has also been the plenary speaker in workshops and audiences all over the globe. Shes a published author of several articles, book chapters and prevention books on FASD. Shes the founder of the Circle of Hope, a mentoring network for women who have used substances during pregnancy or have a child with FASD. Shes provided

a multitude

of

interviews

with

the

media

and

been

featured

on

not

only

US

national

television

but the British Broadcasting Corporation. Kathy, welcome and thank you for sharing some time with us today.

Kathy Mitchell: Thank you very much, David. Im really delighted to be a participant in this really very unique telesummit.


2/18





David: Thats quite a title youve got: Creating a Circle of Hope: Preventing FASD by Supporting Women. Could you tell us how you came to choose this title and where your passion for the topic comes from?

Kathy: Sure thing, yeah. As you mentioned in the intro, I started a group for women who have birthed children with effects from their own alcohol or other drug use or just for women who have usedalcohol and drugs during pregnancy and have many of the guilt and shame issues that go along with use during pregnancy. Again, that program is international and we call that the Circle of Hope. Its kind of a play on that. What I really wanted to emphasize this afternoon is the

importance of

addressing

the

stigma

for

birth

moms

and

families

that

live

with

both

addiction

or alcoholism and having children that have had effects. One of the things that weve seen over the years, at least in the United States, is that the majority of children with identified FASD haveactually been adopted or end up in foster care. Oftentimes, those families just are not well educated on the disease of alcoholism which at least in America, we consider that to be a physical disease. Its a metabolic disease having to do with differences in metabolism.

Likely, oftentimes we see families who have adopted children that love their children that may have effects, theyre wonderful people that adopt our children that take these children as foster children, but oftentimes theyre very angry at the birth mother, rightly so. As a birth mother myself, I understand that. I understand that, but one of the things I really believe is thatif we really love our children with effects then we really need to get their whole family system. Ireally dont believe we can ever prevent FASD if we dont learn about alcoholism and addiction and how that runs in families, how that is a disease and help foster parents and adoptive parents understand that disease as well so that they can have language to talk to their children who have been affected about their birth families. Thats really what I wanted to get at.

I hope to really also include some understanding about what is treatment for people and what is addiction? Why do some people become addicted and others dont? Certainly, you dont have to be an alcoholic to give birth to a child with an FASD, but most people that do have children with a diagnosis are, so most mothers are people who have addiction problems, not

always but

the

majority

are.

Also,

I wanted

to

talk

about

treatment

for

women,

treatment

modification for individuals that may have an FASD which of course is very common and recovery. What is recovery? And what is recovery in families?

David: Thats an important point you're making. In order for foster and adoptive parents to explain their family of origin to the children in their care, they really have to come to terms emotionally


3/18





with the mother and the mothers family system that they came from. Thats precisely why I invited you on this telesummit, to help people gain that insight and understanding. Please, carry on.

Kathy: Thank you. Before I really get started, I did want to give the audience a little bit of background information about the National Organization on Fetal Alcohol Syndrome. If you move to slide 2, youll see some information about our NOFAS Clearinghouse. NOFAS is now 25 years old. We publish a weekly enewsletter that comes out every Monday. We would encourage everyone toplease sign up for that. If you have events in your country or community or any publications

that you

would

like

for

us

to

feature,

if

you

could

let

us

know

about

that,

that

would

be

terrific.

We also have a Facebook page. We have a Circle of Hope Facebook page thats private. We tweet and engage in all the social media sites that we can.

Another important feature to our clearinghouse, by the way, is nofas.org. I think it may be listed on the next slide. If you go to our YouTube site, the YouTube icon on our website, we have interviewed over 180 individuals with FASD, birth mothers, adoptive mothers, people whoare affiliates in the United States, researchers, clinicians from around the world. Our goal is to continue to interview people to get their research out, their findings out, their comments out. We love to interview lots of folks that are participating in this telesummit as well.

Well move to slide 3. Again, theres the nofas.org website and just a little bit more information and just to let folks know they can order free materials on our website.

Well move to slide 4. Oftentimes, the stigma again is really difficult to overcome. Of course, theunborn babies are victimized. We all certainly get that. One thing that I can tell you from the hundreds of women who are participants and members of the Circle of Hope is certainly, Ive never met a birth mother that intentionally harmed her own child. One thing that we all really try to devote our lives to is to prevention. Its an issue where really everyone is a victim. Oftentimes, people naturally look to who should we be blaming?

One of

the

things

we

see

in

the

States

is

that

doctors

just

dont

ask

the

questions.

Theres

a

resistance here in the States to screen women for alcohol use. Theyll tell you they just dont have the time. If women do report that theyre drinking, they really dont know where to send them anyway. Some doctors even believe that its really okay to drink, so they stereotype women, so if women dont look like somebody who would be an alcoholic, they are not even going to ask those women because they look to be just fine to them. Some doctors again think moderate alcohol exposure is okay and really dont understand whats moderate to one womanmay be not be moderate at all to another. A woman living with alcoholism may drink three or


4/18





four glasses of wine with dinner and see that as moderate alcohol exposure. Theres this idea that once you're an addict, you're always an addict that treatment doesnt work, so why would I bother?

Then, on the other aspect of that, we have women who are in denial. Denial is one of the symptoms of living with addiction. You really cant see it. You're usually the last one to really understand and see that you actually have an illness and that you cant stop drinking or using drugs on your own, so they just dont see the need to talk about it with their doctors. Here, there are some states that will actually prosecute women for using alcohol and/or drugs during

pregnancy so

theyre

afraid

that

the

physician

may

report

them

and

they

may

be

prosecuted;

but more importantly, theyre fearful of really losing their children to child protective custody. Iwomen are reported for use during pregnancy, not only can they take the baby once its born but they can take the children that are living with the mother at that point in time. Theyre afraid. Theyre worried. Women worry about the stigma. They are afraid to tell the truth to their physicians because, hey, their physician is a great guy. They like their physician. They like that they have a relationship with their female physician and theres an element of shame to report that you're using and you're not able to stop drinking.

David: Thats quite a list. I just realized that there were really states where you can be prosecuted. I thought those laws have been repealed.

Kathy: No. There are states that will still prosecute. Its usually targeted to women that use drugs, which is interesting because as we know, alcohol is really the most damaging social recreationaldrug of choice that women can choose. Its a neurotoxin and does more damage than many of the illegal drugs used here in the States.

The other point is women are confused. Because of the media, we have these little snippets that will come on the news like studies from wherever, from the UK or the Denmark study where the media will only give you a snippet of the information and the news will report it like, hey, it turns out that drinking during pregnancy is actually safe where thats not what the

research says

but

thats

the

way

it

translates

here

in

the

States.

We can move on to slide 5. One of the things we promote at NOFAS is in order to prevent FASDwe ought to be screening all women of childbearing ages. Again, the CDC monitors women and their drinking patterns. We know that women are drinking more often and in larger quantities. Alcohol is a major factor in unprotected sex, and 50 percent of pregnancies are unplanned herein the US. We also need to refer women with addiction concerns for further treatment or


5/18





certainly if a woman is pregnant and continues to drink or drugs certainly that we get them intoa protected treatment environment so they can get the help they need.

Move to slide 6, please. One of the questions that comes up often is this idea that, well, is alcoholism really a disease? It is defined as a primary chronic disease with genetic, psychosocial,and environmental factors that will influence how it develops, just like really any other disease. Alcoholism or any addiction actually occurs in the mesolimbic or dopamine system, which is an area of the brain that is not under conscious control. It looks as if people are doing this on purpose and should be able to cut back or control their use, when in fact when you're suffering

with addiction,

it

is

an

involuntary

compulsion

to

use

where

you

get

to

the

point

where

you

could not control your use.

As we move to slide 7, Id like to just take a few minutes just to introduce you to how I got involved in the world of FASD, which I used to say was by accident, but today I honestly believe maybe it was all quite on purpose and that really theres no such thing as accidents. The fact of the matter, in 1977, here is a photograph of my three children. Thats Danny, Karli, and [Erin 00:18:39]. As far as I knew, my kids were just happy, healthy kids that were born to a very young, hippie mommy. I was a young woman who grew up in the US and spent my weekends going to see people like Jimi Hendrix and Janis Joplin and rock and roll stars of the 60s and 70s.Back in the States when I was growing up, it was typical fro teenagers to be drinking and

smoking marijuana and using a whole array of psychedelic drugs and narcotics and amphetamines were big with the culture of drugs, sex and rock and roll, and if it feels good, do it. Thats how I grew up.

I was a child who grew up in the suburbs of Washington, D.C. in a nice family, so we look like a very nice family from the outside. We lived in a nice little house with a sidewalk in front and wewent to church every Sunday. What was happening though in my family was my father was living with alcoholism. We didnt really know what alcoholism was. It turns out that his father lived with alcoholism and my mothers father lived with alcoholism and it was all running throughout those sides of my family. Back in those days, we didnt talk about things like that.

That was

all

very

secretive

and

things

you

didnt

air

your

dirty

laundry

per

se.

We didnt understand that until many years after this photo was taken, but I believe that I manifested early signs and symptoms of alcoholism very early on. Again, I seem to have a very high tolerance to alcohol. When I drink alcohol, I would try other drugs that were all over the school yard when I was going to school. I got pregnant way too young, when I was 16; married the father of the baby, and we proceeded to have three children. One of the things that I did when I was pregnant is I stopped using drugs because I understood that drugs could harm the


6/18





developing baby, but I did not know that alcohol could harm a developing fetus and I continuedto drink wine when I was pregnant. Because I was so young, I wasnt drinking every night, I drank more on the weekends and I drank wine on the weekends. Back in those days, we believethat wine was good for the babys blood and beer made you have a big, fat, healthy baby. We had all kinds of false information.

There my kids are, in 1977. All three of them were alcohol exposed. Of course, the first piece of American literature to come out came out in 1973. My two older children had already been born before that information even came out. In 1977 when I had Erin, my youngest there, it

had been

out

for

some

years,

but

it

sure

didnt

come

out

to

the

general

public

at

that

point.

All

three of my children were exposed. I had no idea that any of them had effects.

What happened years after this, was I ended up leaving my first husband, the father of these kids. I got married again. It was a very bad marriage based on very poor judgment. My alcoholism had progressed to the point where I was drinking more and more, using more drugs.I ended up pregnant twice in that marriage. I had a little boy who died the day he was born. In 1982, I had a little girl that I was sure was going to change my whole life, and by that point, I was so sick and tired of being an addict with no goals, and I just really wanted to be a good mother. I left the father, the second husband, moved on my own. I had the baby. I gave birth toa beautiful little girl. She was a really healthy baby, weighed over eight pounds. When she was

three months old, I came in and found her lifeless in her crib. They said that she died of crib death or sudden infant syndrome.

Today, there isnt a doubt in my mind that both of those children died of a direct consequence of me using alcohol and possibly other drugs earlier in the pregnancy. In the States here, there is research that will be coming out and we actually have an interview with the acting director ofNIAAA referencing alcohol as a major causal factor in both fetal and infant death, including SIDS.

David: Just before you carry on, for our listeners, whats NIAAA?

Kathy: Very good. Thats a good question. I hope I get it right. Its part of the National Institute on Health, known as NIH. NIH has different institutes that research various diseases. NIAAA is the institute that researches alcohol and alcohol use and alcoholism.

David: Thank you.

Kathy: They primarily do the alcohol as well as the FASD research. You're welcome.


7/18





We can move to slide 8. Theres a picture of Karli, my daughter who has fullblown fetal alcohol syndrome. This is her at 10 years of age. She was still misdiagnosed at that point. Ten years after the first research came out, because she was born in 1973, I still had no clue that there was anything called fetal alcohol syndrome or that my daughter had it. For those listeners that are familiar with the facial features of FAS, my daughter, Karli, has the full expression of FAS. She has the flattened philtrum and the smaller eye openings and the thin upper lip. She has microcephaly or a smaller head circumference. She has a very stereotypical body type, very thin. Actually, her nickname was [Beanie 00:26:25]. We called her string bean or Beanie. She just didnt seem to gain weight. At age 10, she still couldnt ride a bike. She was a very strong

reader. She

was

very

articulate,

very

sweet

and

loving.

She

actually

got

along

great

with

her

peers, but we started to understand that she was slow. When Karli was young, she had ear infections, and the pediatricians here kept telling me that Karli was developmentally delayed due to her ear infections and that she would catch up. At age 10, they ran some more tests and said that she had cerebral palsy, etiology unknown.

Well go to the next slide, which is slide 9. Karli was diagnosed when she was 16 years of age. When Karli was 16 years of age, I had gotten sober. I had finally gotten into treatment. I was two years clean and sober. I had to actually finish high school because I dropped out in high school. I started taking college courses and started learning about how to become an addictionscounselor and stumbled upon some information about fetal alcohol syndrome. I was sure once read about it that Karli had FAS and not cerebral palsy. I took her to get diagnosed at age 16 and they told me that Karli had fullblown fetal alcohol syndrome. I think one of the things that amazed me and surprised me the most was the fact that it wasnt about drugs. I was always so focused about drugs, and that was probably because thats what my family focused on. If any physicians ever talked to me at all, it was about drugs, never about alcohol. I am indeed an alcoholic, and when I drink, I use drugs and lose control of my life. Thank God I got into treatment, and thank God Karli got the right diagnosis so we could tell others about what alcohol could do to a developing fetus and the lifelong effects that it could have.

One of the things I guess Ive really tried to focus on with our family is that just because Karli

has fetal

alcohol

syndrome,

which

is

a terrible

thing,

we

need

to

look

at

and

pay

attention

to

and focus on what is right about Karli. Its sad that she has so many problems and issues, but her life is not sad. The fact that we have her is not sad. She is a great asset to our family and to the world. She has many gifts and many lessons for all of us. Ive listed a few on this slide 9, but one of the things that she reminds us of and our family is not to take simple things for granted. A lot of things that we do very easily like using a flat iron or a curling iron she cannot do, and itsvery frustrating for her.


8/18





We try not to take ourselves too seriously. Karli makes every day fun. She reminds us that conscious contact with some spiritual entity is real because she seems to have quite a connection. She pays attention to the little joys, and she is always nice to people, especially to us. Its very important to her that she says goodnight before she goes to bed and says good morning every morning.

David: I think this would be a great opportunity. Could you give us an example, because Ive run into that too in these interviews, how she makes things fun? Some examples of how she makes you laugh.

Kathy: Well, Karli makes us laugh every single day. A lot of that is because of her inability really for abstract thought, so shes very concrete. If you make some sort of reference to something, which I cant think of anything right now, Karli will see it in a very different light. Karli loves to create things, so shes always coloring. Shes always cutting things out, gluing things, collecting like beads and other things and making collages. I might be in the kitchen or in the other room, really trying to get some things done because Im very busy and what I have to do is very important, and shell come in and grab my hand and bring me into her art room and ask me to see what she has made, which I can find at the time very annoying because I am very importantand what Im doing is very important. Id come in there and she sits me down and the look on her face and what shes put together that what she does for me centers me. Ive realized, oh

my, gosh, what shes created here is absolutely beautiful but this is a much more important moment in our life than what I thought was really important that I had to get done for NOFAS. She has a way of connecting all of us in that way, bringing it all back home, if you will, where she forces us sometimes to see that life is really quite simple and beautiful and that we overcomplicate everything and make everything stressful. She seems to be able to pull it all together and make sense with some of that for us.

David: Theres a great expression here in the First Nations Community that the creator took some giftsaway from people with FAS but gave them others. What you're saying here in a wonderful way is celebrating what strengths she brings to your family and your community.

Kathy: Absolutely. I used to kind of ... I came into my recovery, if you will, early in my recovery, I looked at it like why me? Why me? My life is so hard. This is all so difficult. Over the years, Ive been sober now for 29 years, now I look at her and our life and I can honestly say, why me? Sheis such a beautiful human being, and she is unable to judge others. Ive had people in the nativecommunity remind me that in their tribe, they consider Karli holy, that she is without sin. That kind took me back for a moment when a spiritual leader from a tribe in Montana had pointed that out to me. I just thought that is very true. I have learned over the years that its just as


9/18





much of a job of mine to teach Karli to be safe and to take care of herself and to take care of her needs, but its just as important for me to learn the lessons that she is here to teach us.

David: As one of the people Ive interviewed said, its not a hand down. You're not being virtuous to help somebody less fortunate. Its a hand across because theres a partnership and its equal.

Kathy: Thats a beautiful way to say it. Yes, absolutely. We consider ourselves quite blessed.

If you move to slide 10, one of the things that happened for our family, once I understood what it was, I started to learn about it but I was asked by the hospital that diagnosed her if I would tell my story at a conference. Its interesting because I couldnt afford. I didnt have the health insurance to get Karli diagnosed and I couldnt afford to pay for it because at the time, I was a single mom. I had left that second husband and I had been single raising my three kids. I was in early recovery. I didnt make very much money and I couldnt afford it. I had gone to the social work department at the hospital and asked them if I could barter with them if they would see Karli in their clinic and I would do some free training for them. They took me up on it, and they had me speak at a national conference in Washington, D.C. that was targeted for physicians. I told them my story. Actually, thats how I got involved with NOFAS, because one of our senators, his staffer was in the audience and they invited me to testify on Capitol Hill on behalf of an FAS bill, and I did that. The woman who was founding NOFAS at the time, Patti Munter,

invited me to participate with her to get this organization going. Thats how I got started.

By us telling our story and just being very vocal about it and telling the truth about what happened and owning that I did drink when I was pregnant, its really been a real blessing for usand it really catapulted us into really extreme recovery, if you will. Weve had a lot of opportunities to tell our story through a variety of media and print and what have you. One of the ways we did that was on a show called Law & Order: Special Victims Unit. Thats a very poplar show here in the US. On slide 10, you see a picture of Karli with Mariska Hargitay, one of the main actors of the show. In the background, you see many of the NOFAS materials. They dida mockup of the NOFAS office and did a story about a woman who was drinking during

pregnancy and

ended

up

having

a child

years

prior

with

FAS.

Anyway,

so

weve

been

really

fortunate with that.

If you look at slide 11, I think one of the points I really want to make, just to underscore the importance of treatment and my gratitude for having an opportunity to address, to understand that I am an alcoholic and that I couldnt safely drink anymore and that my drinking had caused not only my life to be a mess but I had damaged the people that I love the most, my children. Its that because of my recovery and my family, my children, naturally benefited from my


10/18





recovery and learned from my recovery and chose not to drink and drugs during their pregnancies. Heres a picture of three of my grandchildren. I have actually six grandchildren. Those three there are birth grandchildren. Not one of those children was exposed to one drop of alcohol, which is a miracle. Its a way we can break the cycle. Why Im such a strong and passionate spokesperson for getting women the help they need to stop drinking, because I always say even if you dont like her because we can be really horrible people when were using, but even if you dont like her, get her the help she needs because it will break those chains. If we want to break the cycle of not only alcoholism but FASD, we need to get the momsthe help that they need so that we can break those chains.

If you look at slide 12, I think one of the aspects to this whole stigma in FASD is the name, fetal alcohol spectrum disorders, because its one of the only conditions that actually names the etiology, what caused your child to have this disability. Well, I drank when I was pregnant. This is almost like wearing a scarlet letter around. Its like being branded as I am a woman who purposely damaged my own child. Its interesting because years ago before I knew what Karlis actual diagnosis was, I used to say cerebral palsy. When I told people what her diagnosis was, people would respond to me by saying things like, oh, bless your heart; oh, isnt that something; thats too bad, dear, and that sort of thing. Now when people ask, oh, what is Karlisdisability? I say, well, she has fetal alcohol syndrome. Ive actually had people say to me, oh my goodness, well, bless your heart. I didnt know you adopted Karli. Then, when I say, well, I didntadopt Karli, shes my birth daughter, they cant get out of the store fast enough to run away from me. You can imagine why so many birth mothers wont tell others what the diagnosis is and they dont want the diagnosis of FAS because its so difficult to live with. Thats one of the reasons frankly why we started the Circle of Hope.

David: Can I interject here?

Kathy: Yeah.

David: The two, Smith and Jones, who wrote that first paper, thought that it would be instructive and

preventable if

people

knew

where

it

came

from.

Before

he

died,

Smith

really

regretted

that.

They should have followed the usual medical protocol and named it after themselves like Creutzfeldt Jakob or whatever, right? They came to realize that they had sort of the field back by trying to inform people where it came from. It really just stigmatizes the mother and makes treatment and even diagnosis that much more difficult.


11/18





Kathy: I believe it does. I actually spoke with Dr. Ken Jones, who is an incredible human being by the way, but that we need to have like a parenthesis diagnosis. A different name for it I think wouldreally be helpful.

David: Yes.

Kathy: If you look at slide 13, I think one of the things that we all ... and certainly, David, I know you agree with this because of the fact that you put this telesummit together. Weve got to provide hope for individuals and their families. Although this can be a tough diagnosis to live with as a

birth mother,

its

a tough

diagnosis

for

the

individuals

or

children,

its

a tough

diagnosis

for

the

adoptive parents, and oftentimes youll hear them say, well, my adoptive child has FASD. Theylhave to clarify that. I understand that. I dont begrudge anybody. I understand. The bottom line is weve got to provide help. Its not the end of the world, and weve got to stop awfulizing this disorder because its a terrible thing that its preventable and its not being more effectively prevented, but people with FASD arent terrible people. People that have had children that drank, their birth mothers arent terrible people. These are families doing the best that they can. The more we can just speak honestly and openly about what it is and let others know, I think that the better the world of FASD will be.

David: One of the luminaries in this field, I know you know Jan Lutke. She has a great expression about

where theres opportunity theres hope, and where theres hope theres opportunity. For me, part of the organizing principle of this telesummit is for more parents to hear more positive stories from other parents.

Kathy: Well, thank you. Yeah, I love Jan and the work that she has done. She is so gracious and warm to the many ... to all parents, but, again, most especially birth mothers. Its so wonderful to have an icon like her kind of embrace some of the moms because its important to know most of our mothers come in so beat up, so ashamed and full of remorse. Its a very difficult thing to realize and to accept and then to speak openly about harming your own child.

Again, if

you

look

at

slide

14,

that

is

the

logo

of

our

Birth

Mothers

Network,

our

Circle

of

Hope.

For those that know yoga, thats the warrior stance. The message is that these women arent victims; theyre warriors because they own it, they talk about it and they help others. Its important to note that no matter where someone may live in the world, they can refer women to us because the more women we have, the more we can provide mentors. We provide mentors. We do a newsletter. We have an annual meeting which typically is just for US citizens at this point because its US government funding that pays for that. The vision is for the Circle ofHope to be very global and broad and to help women all over the world.


12/18





If you look at slide 15, if we think about support and we think about whether thats treatment, whether thats finding help through counseling or through a church or synagogue or mosque or wherever people find help in their own communities. We want to help women to change their belief system. Thats part of the whole recovery process. Help her to be able to see good things in her life because oftentimes, women, again, come from a lot of turmoil, sometimes troubled childhoods, sometimes domestic violence. We want them to begin to see themselves in a different light, to see themselves as being beautiful, having the ability to giggle and laugh. The whole idea is that we want her to recognize who she was as a child before all of this stuff happened and she developed a lot of negative ideas about herself. Because once we support

women and

we

see

that,

then

what

were

going

to

see

is

them

become

really

who

they

are.

Werefer to that as watching this new bloom blossom. Once that happens, recovery can really take

place in the families.

If you look at slide 16, this slide is really addressing FASD in systems of care, whether thats addiction treatment or mental health systems or what have you. We need to do a better job of identifying individuals that may have FASD themselves that are being supported in addiction treatment because we need to modify those systems of care. We need to always put it at the forefront. Were talking about a person whose brain is different. Theyre going to think differently, process things differently. Always put that in the forefront, remembering that structure and support is the foundation of success, regardless of what system of care it is. Thats going to improve the outcomes. Thats going to help them because individuals with FASD, one thing they report is once they understand what their disability is, it has helped them.It has been a strength for them and has helped them to maybe find other support that they may need.

David: Can I just interject here?

Kathy: Absolutely.

David: Going back to the previous slide, I just wanted to alert our listeners to the fact that one of the

interviews Im

going

to

be

doing,

we

here

in

Victoria

on

the

west

coast

of

Canada,

it

took

seven

years for a group of very determined community members to get a no or low barrier wraparound care model put in place for women who are pregnant or early parenting. That opened on the 9th of February and its called Her Way Home. There are many other models across the country, but as a very concrete example, it was community driven. This need for it was recognized and every door seemed to be the wrong door. I will be interviewing Lenora Marcellus, who is one of the cofounders of this. A very specific service for meeting that very


13/18





specific need, but I just thought Id put that plug in for that upcoming telesummit interview thatI will be doing.

Kathy: Thank you for bringing that up. Thats one that Ill definitely want to listen in on. Thats for sure.

Again, if you look at slide 17, its just a little bit about what is recovery in a family. Again, I want to strongly address the fact that recovery is not just about recovery from alcoholism or addiction in birth families. Like I said, there are birth mothers who are not addicts. They were not alcoholics when they drank during pregnancy, but theres still this recovery aspect of

acceptance and

moving

forward

and

getting

past

the

diagnosis

and

moving

forward.

Also,

with

adoptive or foster parents that they also are encouraged to participate in recovery. Theres this idea of acceptance and understanding the family system that your children came from, having the language to talk to your children, to always be supportive. Even if a child comes fromterrible abuse, I think its really important that children understand that it had nothing to do with them. They did not cause it, but also that their parents werent monsters, that they were very, very sick, not bad, very sick people that werent thinking clearly because of alcohol and drugs.

Family in recovery, first, we learn to understand about the physical disease process of addiction, physical recovery certainly in families that are dealing with alcoholism. In other

words, they stopped using alcohol and other drugs. Families begin to discover some sort of peace of mind and serenity, some hope, feeling of hope. They learn that by helping others, theyheal. Rather than focusing on the past, get out there and share their story. Help some other people that are living in some of the kind of earlier stages. Families in recovery make amends. They really look not at what others did to them, but they point the finger at themselves and their role and how they may have done things differently. They learn how to identify feelings and address and discuss problems instead of ignoring them or again playing the victim and pointing fingers and blaming. They become more tolerant and accepting of all family members, of all the strengths and weaknesses of all the members. Family just overall becomes more relaxed. They learn how to set boundaries and limits. You start to see growth and self esteem

developing because

theyre

actually

doing

things

that

matter,

doing

things

they

like

to

do,

helping others. They develop new interests and friendships.

Sometimes, we see children who have served in the role as parents. My seven year old son in that picture you saw earlier, he was my mother. Im very sad to admit that when I was drinking out of control, that little boy would be sure that his little sisters were fed or bathed or that I didnt burn the house down with my cigarettes. That little boy lost his childhood, thanks to my


14/18





alcoholism. Once I got sober, he could become a child again rather than having to be the parent. The family together will develop ...

David: Thank you. Thats such a poignant example. People dont talk about that very much where the child becomes parentified, but actually giving him back the gift of his childhood was one of the things you probably didnt anticipate but it was one of those once you set your feet on the path, its one of those things that comes up that just is so confirming of the path you were on.

Kathy: Indeed it is, and its one of the true gifts. I think the point that you make is so well taken. For a

lot of

women,

we

are

just

trying

to

survive,

and

we

stopped

drinking

or

drugging

to

get

our

children back or maybe theres a health issue or a legal issue, but this is one of the huge blessings that we dont even anticipate. That I cant even talk about without becoming extremely emotional because it is so empowering and our children, they not only ... when we are drinking or using and raising kids, not only should we be worried about FASD but theres also so many emotional aspects to this. Children are damaged in many ways, other than just being exposed to alcohol. Our kids, whether they have FASD or not, are all affected. Its impossible to raise a child and not neglect your children or even abuse your children if you're using alcohol and other drugs. I really believe that. These are some of the gifts of recovery.

David: Thank you.

Kathy: You're welcome. On to slide 18, I also wanted to include just some information because I again try to stress hope for families, but there are so many hopeful new research thats going on, not only in the US but across the globe. Theyre beginning to understand more about pharmacologyand what drugs may be more helpful. Certainly, were understanding more about supporting families and counseling and coming in to families is really key. Mentoring not only individuals with FASD, not only birth moms but families, family and parenting support, social skills, practiceis another aspect that were looking at here in the US. In Atlanta, Dr. Claire Coles has been researching mass interventions for children with FASD.

David:

Yes. Weve

interviewed

her

and

her

interview

with

her

PowerPoint

slides

under

contact

will

be

on. Shes one of our speakers.

Kathy: I don't know if you included Dr. Ira Chasnoff. Hes been looking at self regulation awareness andtechniques. Hes from the Children's Research Triangle in Chicago, Illinois. All of these research projects by the way ... pardon?


15/18





David: We tried, but hes contractually precluded. I have lots of time for his research but he couldnt. Maybe in the future.

Kathy: Well, the other two that I had mentioned, Dr. Heather Carmichael and Dr. Mary O'Connor from Los Angeles, California are two other researchers that are doing incredible work. All of this information is on our website as well. Also, Jennifer Thomas, who is part of the NIAAA that I hadmentioned before, part of the research team there through NIH, shes been looking at nutrition. Shes actually interviewed on our website as well. She has found that choline, which isan amino acid but its something thats found in liver and eggs, and by supplementing children

with FASD,

she

has

found

that

you

can

actually

mitigate

some

of

the

learning

deficits

and

it

can

reduce hyperactivity and perseveration. Up until adolescence, its actually been found to mitigate some of the working memory deficits. Also, Dr. Tina Chambers has actually been looking at perinatal choline and other supplements that can ... the theory is that a lot of this nutritional support can add to lifelong cognitive enhancement for the developing fetus. I would encourage you to check out their research as well.

If you look at slide 19, theres also an app thats available through the Centers for Disease Control. Its their FASD app. Ive provided a link, but you can just Google CDC FASD app and you can download that.

David: What does the app do?

Kathy: The app is basically their website on an app. Whats nice is that if you're at the physicians officeor a counselors office or the school classroom, you can easily pull up that app and search broadspectrum of information that the CDC would have on their website. All of those research projects that I just discussed are funded by the Centers for Disease Control. Theres a lot of useful information that families can use to communicate with a variety of service providers. That actually adds a very legitimate research element to say, look, Im not making this up. Check this out.

The American

Academy

of

Pediatricians

has

just

come

out

with

a toolkit.

Ive

added

the

link

to

that. Again, you probably could Google AAP FASD toolkit and find the link to that. The AmericanCollege on OB/GYNs has a webpage on alcohol and women, so its womenandalcohol.org.

David: Whats an OB/GYN for our non English speakers?

Kathy: Its an obstetrician and gynecologist, so its a physician that deals with womens health and a physician that would be the physician to deliver babies and provide the prenatal care for


16/18





women. This group of physicians has put together a wonderful site for other OB/GYNs, other physicians that care for women and provide prenatal care and give a lot of very useful information about women that use alcohol, about screening for women, about FASD. Theyve done a beautiful job on that website. I believe they also include a link to an app for physicians so that they can have information on their iPhone or smartphone that provides information for the physician to give to a patient on FASD and about how alcohol can affect the developing fetus.

David: Those sound like a lot of marvelous resources. We will have Kathys slides up with her

presentation on

our

site

for

people

to

be

able

to

go

back

and

click

through.

Thank

you.

Kathy: On slide 20 is my contact information with, again, our website and my email address which is [email protected] .

David: Perfect. This is marvelous because were right on the hour. Id like to conclude this wonderful interview first by acknowledging that was really for you a fortuitous step the day that you askedthe social work department of the hospital if you could barter for services. As the poem says, way leads on to way, youve just gone from one situation to another that just kept unfolding in front of you, hasnt it?

Kathy: Yes. Indeed it has.

David: In conclusion, what do you think are some of the most important steps when were not here that the world will be supportive and inclusive for our children when were not here advocatingfor them? Whats the big picture of how things need to change?

Kathy: Well, I think, David, we still have a long way to go in terms of addressing the stigma, thats a global issue, on women who drink alcohol. We need to really stop villainizing women because that goes hand in hand with FASD. I think that we need a lot more public awareness and we need a global message. We need a global buy in that this is happening. We need to stop really spending money and time looking at moderate alcohol use and understand that the best message is that there is no safe known amount of alcohol because that moderate alcohol message is very dangerous if you're dealing with someone who may be suffering with addiction because certainly, a glass of wine can vary from 4 ounces to 12 ounces, depending on who you are. We need to gain more of an understanding about why some women become addicted and others dont, why women drink, and just really ... once we begin to battle that issue, then FASD I believe will be a little easier for people to understand because theres so much stigma involved with use during alcohol that nobody wants to acknowledge that FASD even exists or


17/18





begin to recognize what it is. Weve got to recognize how many people are living with this and what we can do about it rather than being stuck in the stigma and awfulness of how it happened.

David: Looking forward, yes. Well, thank you so much for sharing your very powerful and very intimatestory. I know that this is something that Im sure is filling in a lot of the pieces for people who dont quite understand how that child wound up where they are, but its in understanding the whole system that we are going to create that change.

Kathy:

Yes. For

those

of

us

that

are

working

on

the

issue,

we

just

need

to

move

forward.

We

have

so

many great passionate advocates such as yourself certainly for putting this together and trying to reach many more people. I think the one thing that for me Ill say as a parent that I need to keep first and in the forefront of my thinking, which is a day byday, moment bymoment process is that when I get frustrated that Karli cant do something, I need to keep upfront that Im the problem. My frustration is the problem. My thinking about whats going on is the problem. If I keep in the forefront of my mind shes doing the best she can with a brain thats been damaged by my alcohol use, it helps me to address the problem correctly. I think finding away to deal with stress, for parents, is so essential. I have found that in the rooms of recovery and I have to continue to take care of myself and find ways to deal with stress, which I do, because if Im kind of stressed out and frustrated all the time, its not going to help her and its

actually going to hurt her immensely. I think just keeping upfront whether with the service provider, the parents, or whoever, that these are individuals that are doing the very best that they can.

David: Absolutely. Im going to use this then in closing as a segue. One of our speakers is Dr. Rod Densmore, who is himself a parent in a small town of someone with FASD. His talk is called Transcending Caregiver Stress. Hes written a book about it.

Kathy: FASD Relationships is sitting right here on my desk. I love him. He is a gentle soul and one of themost remarkable human beings. He is an incredible man. I just love him dearly and his work.

Good. Hes

a great

addition.

David: Yes. Thank you so much for sharing so much. Well conclude now. Thank you to our listeners. Well be in touch. Thank you, Kathy.

Kathy: Thank you, David. Take care. Byebye.


18/18





Cheryl: Welcome back. We hope you enjoyed this interview and came away with some practical strategies you can try at home. If you know others who may benefit from this information, let them know about this year's summit so they can register at the LivingWithFASD.com website.

If you are unable to listen to a live session or listen within the 48hour window, set your mind atease. You can purchase the Living with FASD upgrade package for $97. We encourage you to consider our upgrade option if you think you might miss a seminar or you'd like to listen more than once, or if you would prefer to download the interviews to your iPod or MP3 player, or perhaps you would like to have written transcripts of each interview, or if you would like to be

able to

replay

this

information

as

you

put

speaker

tips

into

practice.

If your purchase the upgrade package between September 9th and September 20 th , use our

special discount coupon code LWF2013 . That's capital L, capital W, capital F, 2013. You are going to type that in at the checkout, and you are going to receive a $52 discount, so make sureyou act quickly to get this 54 percent savings.

Until next time, let's continue to create community and make a difference for individuals and families living with FASD that will last for generations.

kathy mitchell - "creating a circle of hope: preventing fasd by supporting women"

Documents