I was diagnosed as an adult with #FASD #fetalalcohol is real! written by R.J. Formanek #redshoesrock

Special thank you to guest blogger — R.J. Formanek –
R.J. is one of our beloved FASD Survival Strategy Teachers and FASD Trail Guides — He is founder of FB private group for adults with FASD “Flying with Broken Wings”

Onrjcat being diagnosed with FASD as an adult.

The day an official diagnosis is given a number of changes happen to a person living with FASD. There is of course, the emotional impact of actually having something on paper that indicates what is going on inside of your body and your brain, something that, up to this point has been invisible for the most part.

Oh, sure there are the ‘small’ physical traits that come with FASD (…”It’s no big deal… everyone can’t be good at everything!”) but to the outside world we don’t look all that different.

So you deal with the emotions, one step at a time.
It can take a while to get this part figured out, but that’s OK too.

So, now you have a name for this thing, this thing that is a part of you. This thing…it’s not something that grew in you, or was added to you…
it’s what DIDN’T grow in you...
it’s not just a part of you…
It IS you!

That is what is hard to accept for some people.

FASD affects every single aspect of our lives, from dusk to dawn, dawn to dusk again… 24/7…

Even HOW we see the world can be affected by FASD.

  • We experience the world differently.
  • We feel the world differently
  • Very often we interact with the world differently.

Many of us, even before being officially diagnosed have always felt and understood that there was a difference between you and I… even if I didn’t know what it was.

But now there is a name for this: FASD.

c88a3-18167423-9052034So, you start to notice the differences, now that you (many for the first time in their lives) KNOW what the differences are. For me, it was a point where I could say “Wow, so that is how neurotypical ( I HATE “normal”) people see/do this? I’ve never been able to do that, in my brain …. etc” because for me the conversation about the differences is important.

It’s important for me to understand what makes me different, not just how I am different… but how understanding the difference can make it possible to bridge the gap between your understanding of this world and mine.

So, I am on a journey to understand how you see the world, because I KNOW how I see mine… so I share what I see, you share what you see and between us we both develop a deeper understanding of being human.

Or, rather… that’s the plan, and as we all well know, even the best plans can turn out wrong. Even with the best of intentions.

The difference between having a diagnosis or not is kind of like the difference between needing and having prescription glasses. (This is very simplified, not saying it’s the same thing. )

With the proper diagnosis … I can ‘see’ clearly now.
And if you wear prescription eyeglasses you KNOW what a difference putting them on can make. Your whole world seems to change now that you can SEE what you could never see before.

And it stands to reason that you would be excited because now you have a deeper understanding of the world going around outside your head. So when a person who never had glasses suddenly has them, it stands to reason that they would ‘drink in’ as much of the world as possible, and be thrilled and excited about what they can now see. And perhaps you want to share this new experience with those closest. I mean, it’s almost like a whole new world, in some ways.

It’s not too long before you start hearing back, from those closest to you comments along the lines of “It’s not all about FASD, you know.” and “Ok so you know what it is, now get over it.” and things like that.

I realize it’s often because we can go overboard with our excitement at this new found realization and need to explore all aspects of how we understand this, and our place in the world.

Really – and this is VERY IMPORTANT –

We need to find our own place, as people living with FASD. As human beings.

You see, for me it IS all about the FASD that has changed my brain and my body from the moment it was being formed in the womb. In reality, even without a name… I have known nothing else. Every aspect of my life has been touched by this, from how I think to how I feel and experience things to how I see, taste, smell and even how I get around in this world. But I never knew why.

Living with FASD can often be like standing in a dark room and being hit (not unlike a pinata) from different directions and never knowing where it was going to come from, or why.

Small wonder we are often so reactive.

So, when a person (older than a child) gets a diagnosis and is able to put a name to this thing it is life changing in so many ways. Please, I am just asking that people in this position be given time and space to find out where they fit in, in their own time, in their own way. And it may take longer for us, many times, most times it does – when dealing with the neurotypicals.

People with FASD are often not making excuses for anything, they are learning! And we often learn by speaking aloud with and through life experience.

redshoesheart-FASDFaith2 2So, the next time a newly diagnosed person starts ‘going on and on’ again about how ‘it’s about the FASD’ please PLEASE understand…

It’s all just a part of the learning process.

-Peace out…. Miigwetch…. Thank you.

R.J. Formanek, Founder and Leader at Flying with Broken Wings

The BIG EVENT living with the challenges as a adult with #FASD

rjcat
R.J. Formanek is the founder of Flying with Broken Wings on Facebook which now has over 1000 members flying together.

 

Special thank you to guest blogger
— From R.J. Formanek –

R.J. is one of our beloved FASD Survival Strategy Teachers
And so this is Easter or Passover or Christmas or the BIG CONCERT. . .

We’re down to the home stretch now, only a few more sleeps to the BIG EVENT.

My son goes to spend the holiday with his mom, because as every body knows – nobody NOBODY does Christmas like MOM! 🙂 

2014-04-12 09.28.52
I don’t do decorations or lights or … ask your kids what overwhelm them and find a quiet alternative.

That leaves me and two cats to have fun ourselves.

And we do! They get presents and some special food too! 
  • There are no decorations at my home, no sounds of Christmas choirs or jingle bells.
  • While there are a few paintings and prints in the living room, my own room is bare white walls, save for one small picture of my daughter.
  • I hide the modems because the blinking lights tend to throw me off after a while. And between the computer, the cable box and the telephone we have a whole lot of blinking lights all over the place. So, no need for Christmas lights as far as I’m concerned! LOL!
It sounds bleak to some, but to those of us living with FASD it feels safe and comfortable.

There are times when we just need a break from all the lights and sounds and my home is where I can do this.

2014-04-12 09.52.11
A snuggly blanket – warm and safe – this is the prayer shawl Jodee Kulp wraps herself in. Each stitch was knit with a prayer for her.

Being a safe place for me sometimes means the exact opposite to my apartment though… it’s the place I can let down my guard and show my frustration at the world, or myself in that world. It’s where I giggle like a little kid while wrapped up in a snuggly watching cartoons, or at this time of year It’s A Wonderful Life. It’s the place I can stop and try to figure out the world outside. It’s the place I melt down.

😦 It’s also the place I build myself back up again. 🙂

Through the years I’ve had to learn to become quite a handy man, thanks to this “thing” I’ve fought all my life.

I can mend a door, change a window, patch a hole and paint like there’s no tomorrow.

Sometimes though, I don’t repair these things… I leave them as a reminder of what can come to pass. People see this damage and go “oh that’s terrible” and all that… but what they don’t know is that same damage is forever imprinted on my soul. I’m not proud of that damage, it’s not something I ever wanted to be responsible for… no it is a shame I have to bear. And not forget what can happen IF I allow myself to get into that frame of mind.

Understanding FASD has made me understand just how very important self soothing is to an adult like me.

There is no one else to do it, and I can’t be melting down or shooting off every time some thing does not go to my liking. Having a person I can trust as my external brain helps me understand many things, but some times I am the only one who can prevent or at least lessen these things from happening. And that is just how it should be.

If I want to be independent then I have no choice but to accept and deal with my own actions.

“I am the Captain of my fate; I am the Master of my Soul”. Understanding that it is because of the FASD that I have a hard time regulating myself emotionally has given me the tools to “fight the beast”.

Knowing and understanding has made all the difference.

I’m so much better than I used to be in this area, but sometimes I still kick a door jamb, or suddenly let loose with some loud expletive… but it is getting better and better. I never thought there was any way to fight this, but I am learning that knowledge really IS power. I CAN beat this thing and I will.

Taking care of myself… eating, sleeping and that sort of thing and a good amount of physical exercise also help to no end.

It is reactive anger and I work at stopping the reaction that causes it to spill out into the world. 

No one can see my confusion and pain, nor can they see my frustration.

2014-04-12 09.29.56
Sometimes I just need to GET OUT of the event! To regroup and be able to return at peace.

I get frustrated that I feel like this, and that leads to added frustration because I feel frustrated for feeling frustrated. Make sense? No… but that’s what it’s like… sometimes it’s a loop I get stuck in. Fun, huh?

So, this holiday season don’t forget how all these sensations and emotions can give us need for some quiet time, for a place we can just relax for a bit. I have to hand it to a great friend and her family… they invite me for over to celebrate in friendship and don’t bat an eye if I suddenly have to go outside for a walk, or stand instead of sit, or walk from room to room… or just sit quietly.

I really enjoy being able to share the festive season with them all.
Everyone I hope you all have a Wonderful and Safe Holiday time… no matter your beliefs or values, we could use more of this “Peace on Earth” stuff!

And that is my wish for each and every one of you**********P E A C E**********

Expressing a voice for the voiceless encouraging the building of better baby brains – http://www.betterendings.org

#1 Day to FASDAY – Join the Ringtone Rally

FASD Day – Ringtone Rally!

From the Incredible Thinktank 

of Teresa Kellerman

Okay, everyone, here’s my idea for FASD Day 2012:

We are going to ring people’s mobile phones with a FASD Day text message. Send the message (my next email) to as many people as you want.

What, you don’t text? Me neither. So I will be sending this message by email, and I will put it on my facebook page. Look for me, my facebook id is… fasstar (of course!) http://www.facebook.com/fasstar

The web link on the text message goes to www.babybornfree.com. This is newly designed especially for viewing on mobile devices. There are links there to an awareness video (from NOFAS), a slide show (from our friends in NY), the FASDay site, and my main info web site.

You can wait until FASD Awareness Day on Sept. 9th and do your texting that day, or you can go ahead and START RIGHT NOW. Because, as I always say, EVERY DAY is FASD Awareness Day! So go text everyone, email everyond, fb everyone, telephone everyone. Heck, you can even raise awareness the old-fashioned way and tell people face to face about what alcohol can do to the developing baby. You never know when the message will be shared with someone that will save a baby’s life, or maybe an entire generation of babies!
Woohoo! Let’s do it!
Teresa

#14 Days To FASDay – Plan a Pregnant Pause!

Host a Pregnant Pause… in your community… at your school… at your government center… get some attentions









How many Pregnant Pauses can we host around the world….

Need some t-shirts to sport a look….
Visit www.cafepress.com/fasdawareness 

#17 Days To FASDay – Cheers to all babies

Cheers to all the babies.
May they grow healthy and warm in their special places.

Tonight our family will celebrate a new tradition.

We are baking a large pretzel bread for break-fast tomorrow, the knot in the bread will be a square knot – the bread braided and we’ll be lighting candles in remembrance of all the persons in the world with Fetal Alcohol brain damage while we say a prayer of protection from the alcohol. Our family enjoys this tradition on New Years.

This may be a way we could all celebrate the eve of 9/9

#19 Days To FASDay – Toolbox Parent Support


Visit Toolbox Parent for support and ideas

Need quick ideas to help with a complex child. Stop by and visit an informative site to bridge understanding, make connections with families of high risk and special needs individuals and professionals. Deb Fjeld, Minnesota Post-Adoption Parent Liason and Jodee Kulp invite you to visit our new site designed to build collaborative efforts between caregivers and professionals.
What is a Toolbox Parent?

A toolbox parent is a parent who is willing to reach out and discover new ideas and strategies to work with a difficult child. If you are struggling with behaviors in your home, we hope that you can find something here to help you.

We need power tools – consider joining our team!
Power Tools: Regionally, meet our Power Professionals. This section represents some of the best professional minds in the business of “kids”. Learn about their specialties. If you are a professional skilled in working with REALLY complicated children with neurodiversity issues please contact Jodee or Deb

#26 Days To FASDay – Free FASD videos


Special thank you to our New York team of Advocates who prepared this video and to all the children, teens and adults with Fetal Alcohol Spectrum Disorders (FASD) who offered their pictures to put a FACE on FAS.

Help us “Raise The Standard” for our next generation!

Person First Language from MOFAS – 
this will help you promote awareness honorably to all

Not only must we walk the walk – we must talk the talk.
Yes, person first language takes more space to write and more time to say, but the end result allows for respect in honoring the strengths and abilities of another person.

Watch the MOFAS tutorial and give it a go for all your FASD presentations.



Use Teresa Kellerman’s video

in your presentations on Fetal Alcohol to build awareness.
This is worth watching – very short

Want the facts about alcohol use during pregnancy?
Here they are.
All sources are cited at end of video.
More information available here: www.come-over.to/FASCRC

More videos you can use from YouTube
(search FASD or fetal alcohol on You Tube to review – NOFAS has an excellent new series)




Recovering Hope is an intimate and evocative video about the mothers and families of children who are affected by Fetal Alcohol Spectrum Disorders (FASD). The video, created for viewing by women in recovery and their counselors, is divided into to half-hour episodes to allow time for discussion within a treatment session.

Eight women tell poignant, memorable stories. They speak out about how alcohol use during pregnancy affected their children, how they are learning effective new ways to parent, and how they are recovering hope for the future. Six researchers and clinicians support these stories by explaining the physical, mental, behavioral and learning disabilities associated with FASD and discussing evaluation and intervention services

Need a speaker? Check out the http://www.nofas.org/ Resource Directory for US speakers

Online Manual – www.fasday.com
Seminar – Or try our easy, effective, exciting 1½ hour program that walks you
 through the morning of Sept.9: http://www.come-over.to/FASDAY/ABCDEFG/ 
(material from 2002 has excellent ideas)


Follow us through the next 60 days and plan your local or personal project to build awareness of fetal alcohol spectrum disorder – Each One Can Reach One!

Need family support visit www.toolboxparent.com
Need ideas for adults living with challenges of FASD visit www.braidedcord.net
Need information on fetal alcohol spectrum disorders visit www.betterendings.org
Interested in service dog for FASD visit www.thechancerchronicles.com


#28 Days To FASDay – An easy FASDay Plan

AN EASY FASDay Plan
Yes! You and one friend can do something!

Easy Plan – The Foolproof FAS Day Formula
Sit down with paper and pen. If you have one or two other key people to work with, print up copies of this manual, and invite them to join you. Give them some time to read it, and then answer the following questions:

  • Who is chairing this event?
  • Who can we count on to help out?
  • What kind of help can they give us?
  • Who do we know will want to attend?
  • Potential attendees — what other people and organizations in the community do we want to reach? (Start with interested friends and family members, and professionals –doctors, lawyers, teachers, etc. – that you know. Then add people who should be interested: e.g., local municipal, state/provincial and federal politicians, agencies with an interest in FAS, school personnel, etc.)
  • How many people can we reasonably expect to attend?
  • Will we require child care?
  • Where should we hold this event?
  • Who are our best local media contacts to promote this event and the FAS issue?

1. Confirm location.
Once you’ve decided how many people are likely to attend, choose your location. Try to find a reasonably-sized meeting room with comfortable seating, and a convenient area to serve coffee, tea, juice, and snacks.
2. How to Obtain a FAS Day Proclamation
If you want civic and state FAS Day proclamations, find out the appropriate name to write to, and do this immediately. You’ll find a boiler-plate letter plus sample proclamations in this document. (Note: Canada’s provincial governments are not likely to issue proclamations.)
3. Planning the Video Premiere — Plus
The program is a simple one, but you’re going to need to make some choices.
Who will be M.C.? Choose the most articulate person in your group, or try for a local personality who could be sympathetic to your cause – e.g., a TV or radio broadcaster or local entertainment figure.

  • Will you use the Invocation, and if so, who will read it?
  • Will you ask your mayor or a municipal counsellor to read the Proclamation?
  • How will you observe the worldwide “Minute of Reflection” at 9:09 a.m.? e.g., will someone ring a bell nine times?
  • Or will you say a prayer, sing a song, have someone play a musical instrument, or have simple silence?
  • Will you have a keynote speaker following the video, and if so, who?
  • Or will you have a panel discussion? Your panel could include a birth parent, a foster or adoptive parent, an articulate survivor of FAS/FAE and a professional (teacher, doctor or nurse, psychologist or social worker, knowledgeable lawyer or judge, etc.)
  • Will you add music to the mix – possibly a live musician?
  • Would you like to close with the poem, “The Integrity of Hope,” by Michael Kami? And if so, who will read it?

4. Invitations and flyersWe’ve enclosed a sample invitation and 2 sample flyer/posters. Ask your committee members to come up with names of people to invite, and make a master list, which can be used in 2001. To save on postage, you may want to e-mail and fax many of your invitations, but make sure to follow up with a personal phone call. The invitation contains a RSVP: whose number will invitees call?
5. Breakfast Food and Drink
Easy does it. Muffins and/or bagels, cheese or cream cheese optional, possibly some cut-up melon or citrus fruit, coffee, tea and fruit juice, cream/milk and sugar. Possibly a local retailer or coffee shop may be willing to make a donation. If you’re tight for cash, possibly a local service club or church will help. Will you need storage or refrigeration or help setting up tables? Do you have enough electric coffeemakers?
6. Other equipment
Make sure your video equipment is adequate well in advance of Sept. 9.

  • Is your VCR working?
  • Is your TV set or monitor large enough for the size of group you expect?
  • If you’re expecting two dozen people or more, you may need two or more monitors hooked up to one VCR: this can be done easily with a splitter. Most audio-visual specialty stores can show you how it’s done.
  • If more people than you expect turn up, simply hold two screening sessions. One group snacks and chats while the other group watches the video. Then they trade places.
    Your alternative is to rent a video projector and screen from a company specializing in video display or presentation rentals. This will cost about $250-$300 per day, and you will need to darken the room. Some colleges and universities have this equipment in screening rooms.

7. Media RelationsYou’ll find a sample media release, ready for you to personalize with local information. Make a list of all of the members of the media you would like to reach, particularly those whom you know personally. You should also prepare a list of individuals who are knowledgeable about FAS, and willing to talk to the media. These might include participants on your panel – parents, people with FAS, and professionals. The media release can be faxed, but make sure you have a person who will make follow-up phone calls. You will also need a media contact for any members of the press, radio or TV who want to know more.
8. OtherBells and carillons around the world will be ringing nine times at 9:09 a.m. in the international Bell Concordance, to remind the world that during the nine months of pregnancy, a woman should not consume alcohol. If there is a church bell in your community, you may want to speak to the minister or priest, to ask if it is rung manually. If so, we suggest you photocopy the material from the FASworld Report regarding the Bell Concordance, or download and print it from the website http://www.come-over.to/FASDAY/manual.htm , and invite the church to join in. If you live in a city which is lucky enough to have a carillon, get the name of the carillonneur and do the same. Gerald Martindale, carillonneur at Toronto’s Metropolitan United Church geraldm@planeteer.com> is building on last year’s concert of international lullabies and would be pleased to share this with other international carillonneurs.

  • Make sure you have a guest book easily accessible as guests enter or leave. It would be useful to have someone stationed to remind people to sign the guest book and hand out FAS Knots as your guests arrive.
  • The FAS awareness symbol, the FAS Knot can be easily made for about 8 cents each. They can be given away, sold for about $2-3 each, or you can simply have a cash box available for donations. Complete information on the FAS Knot can be found at www.come-over.to/FASDAY/manual.htm
    FAS Knots and the guest book can be placed on an information table, with other available material. The table can also include petitions your group wishes to support.

For suggestions for both U.S. and Canadian petitions, e-mail Bonnie Buxton at ogrady@axxent.ca.
For suggestions on posters and printed material you can download yourself, check out the website
http://come-over.to/FASdisk/

#32 Days To FASDay – A Moment of Silence

A Moment of Silence
In Memory of Christopher Surbey 
& thousands of other young people
FASD Awareness Day 2012
And when will we begin to see the real person behind
the mask of hidden disability

The traditional “Moment of Silence” observed at 9:09 on each FASD Awareness Day will this year be held in memory of Chris Surbey, son of Val and Vince Surbey of Winnipeg, Manitoba.  Val Surbey is one of the founders of FASlink, the mail list support group for parents all around the world.  Val and Vince are adoptive parents of three children with FASD. Chris, the oldest of the three adopted children, was diagnosed with a Fetal Alcohol Spectrum Disorder and also with Reactive Attachment Disorder, and was receiving support services in a community residential setting.  His parents had been advocating for a safer environment for Chris and for closer supervision.  Their concerns were ignored.  Their efforts were dismissed as those of overprotective, demanding parents.  (Read More…)
Visit Teresa Kellerman’s Memorial Faraway Stars page to read more stories and see pictures of persons with FASD

Keep in Mind

  • Correctly identifying and addressing FASD can improve outcomes for individuals, families, agencies, and systems
  • It is impossible to work successfully in most settings without having a firm working knowledge of FASD
  • Recognizing and addressing FASD can save people’s lives 

Available Presentation to Review
“I died twice!”
Liz Kulp’s true stroy
written through her
journals during
adult transition.

How FASD affects mental health and substance abuse treatment and prevention by Dan Dubovsky. For much of his work, Dan’s 28-year old son Bill has been his mentor and best teacher even though Bill died before he could be helped. 


It is the loss of so many of our young people that pushes parents to build a stronger voice.
View Dan’s presentations for more information for a Moment of Silence

It is projected 65% of incarcerated persons may have FASD

Articles to read:

The American Bar Association unanimously passed the FASD resolution August 7, 2012
 
AMERICAN BAR ASSOCIATION

Co-Sponsors: ABA Commission on Youth at Risk, Criminal Justice Section, Commission on Disability Rights, Commission on Homelessness and Poverty, Death Penalty Representation Project, Health Law Section, Judicial Division, Alaska Bar Association, and the American Judicature Society

RESOLUTION APPROVED BY THE ABA HOUSE OF DELEGATES – AUGUST 7, 2012

RESOLUTION

RESOLVED, That the American Bar Association urges attorneys and judges, state, local, and specialty bar associations, and law school clinical programs to help identify and respond effectively to Fetal Alcohol Spectrum Disorders (FASD) in children and adults, through training to enhance awareness of FASD and its impact on individuals in the child welfare, juvenile justice, and adult criminal justice systems and the value of collaboration with medical, mental health, and disability experts.

FURTHER RESOLVED, That the American Bar Association urges the passage of laws, and adoption of policies at all levels of government, that acknowledge and treat the effects of prenatal alcohol exposure and better assist individuals with FASD.

REPORT
Introduction
Fetal Alcohol Spectrum Disorders (FASD) is a serious problem in the U.S., adversely affecting a very large number of children and families, and in recognition of that the U.S. Senate has annually, since 2004, passed a resolution designating September 9th as National Fetal Alcohol Spectrum Disorders Awareness Day. In 2011 Senate Resolution 2591 called upon the people of the United States to promote awareness of the effects of prenatal exposure to alcohol, to increase compassion for individuals affected by prenatal exposure to alcohol, to minimize the effects of prenatal exposure to alcohol to ensure healthier communities across the United States, and to observe a moment of reflection during the ninth hour of September 9, 2011 to remember that during her nine months of pregnancy a woman should not consume alcohol.
The Report provides background on FASD and discusses its impact on the justice system, the child welfare system, and the disability benefits system. It also describes approaches to improving the various problems identified in individuals with FASD who are in these systems. In addition, it highlights current initiatives that are in place to benefit individuals with FASD.
The essential focus of this Resolution is to encourage: improvement in the civil, juvenile, and criminal legal representation for persons with FASD; increased access to FASD expert screening and assessment; attention to the over-abundance of FASD-affected persons in foster care, juvenile delinquency cases, adult criminal proceedings, and correctional facilities; and the use of FASD knowledge in court for the mitigation of sentencing and alternatives to incarceration and execution, including therapy and comprehensive services to rehabilitate and reduce recidivism. Neither the Resolution nor this Report should be construed as suggesting that use of alcohol during pregnancy is, or should be, a criminal act.
1 The language of the Senate Resolution includes these observations: “…fetal alcohol spectrum disorders are the leading cause of cognitive disability in Western civilization, including the United States, and are 100 percent preventable…fetal alcohol spectrum disorders are a major cause of numerous social disorders, including learning disabilities, school failure, juvenile delinquency, homelessness, unemployment, mental illness, and crime”.
1
The ABA House of Delegates has not previously addressed the issue of FASD. FASD is a disability that cuts across all age ranges, and it is a lifelong disability. There are unique concerns and problems facing children and youth with FASD that need to be addressed. This includes the very large numbers of children with FASD in both the foster care and juvenile justice system, as well as in the adult criminal justice system and correctional institutions. The focus of the ABA Commission on Youth at Risk is on youth, and that is the reason for its principal sponsorship of this Resolution. Given the unique nature of FASD, this Resolution, while addressing and focusing on issues that impact children with FASD, also contains suggestions for actions that would benefit adults with FASD.
This Resolution and its accompanying Report provides a road map, for legal professionals, lawmakers, and those in government who deal with youth at risk, to increase awareness of FASD. It also encourages federal, state, territorial, tribal, and local law and policy makers to implement laws and policies that reflect the serious effects of prenatal alcohol exposure.
Types of Fetal Alcohol Spectrum Disorders
FASD is a group of conditions that can occur in individuals whose mother drank alcohol during pregnancy.2 FASD can result in birth defects, growth and development deficits, cognitive and learning issues, executive functioning problems, difficulty remaining attentive, and problems socializing, as well as other behavioral issues.3
The correlation between maternal alcohol consumption during pregnancy and deficits in physical and mental development were first identified in the early 1970s.4 The first common symptoms identified among children who had been prenatally exposed to alcohol were growth deficiencies and developmental delays.5 Shortly thereafter Kenneth L. Jones, et al., found similar physical characteristics in these individuals.6 They included similar patterns of craniofacial, cardiovascular, and limb defects.7
A follow-up study followed 11 children whose mothers drank heavily during pregnancy and found many common features among this cohort.8 Among this small sample population, all children displayed growth deficiencies (for height, weight, and head circumference), their abnormal craniofacial features had not changed over the past decade, and they all had below-normal intellectual development.9 Most of these children had low IQ scores and 8 were either mildly or severely handicapped.10
Since that time, several disorders related to fetal alcohol exposure have been identified. There are several types of FASD, including Fetal Alcohol Syndrome (FAS), Partial FAS, Alcohol Related Neurodevelopmental Disorders (ARND), and Alcohol Related Birth Defects (ARBD).11 These four diagnoses share certain
2 National Institute on Alcohol Abuse and Alcoholism, Alcohol Alert, Fetal Alcohol Spectrum Disorders: Understanding the Effects of Prenatal Alcohol Exposure, No. 82.
3 Id. On March 29, 2012 U.S. Senators Johnson, Murkowski, Inoye, and Begich introduced S.2262, the Advancing FASD Research, Prevention, and Services Act, that addresses many of the issues included in this Resolution and Report.
4 Kenneth L. Jones, David W. Smith, Christy N. Ulleland, & Ann Pytkowicz Streissguth, Pattern of Malformation in Offspring of Chronic Alcoholic Mothers, THE LANCET, June 9, 1973, at 7815.
5 C. N. Ulleland, The Offspring of Alcoholic Mothers, 197 ANN. NY ACAD. SCI. 197 (1972).
6 Medically referred to as aberrant morphogenesis.
7 Jones et al., supra note 4.
8 Ann Pytkowicz Streissguth, Sterling Keith Clarren, & Kenneth Lyons Jones, Natural History of the Fetal Alcohol Syndrome: A 10- Year Follow-up of Eleven Patients, THE LANCET, July 13, 1985, at 85.
9 Id.
10 Id.
11 National Institute on Alcohol Abuse and Alcoholism, supra note 2.
2
characteristics and fall within the broader category of FASD.12 All but ARBD involve significant brain damage.
FAS is the most severe of the conditions that constitute FASD. An FAS diagnosis requires three specific deficits:13 a characteristic pattern of facial abnormalities known as facial dysmorphology, such as a smooth ridge between the nose and upper lip;14 growth deficits, such as lower than average weight and/or height;15 and central nervous system abnormalities or brain damage.16 The latter may include a diagnosis of Attention Deficit Disorder (ADD) or Attention Deficit Hyperactive Disorder (ADHD).17 While generally, individuals with FAS tend to be the most impaired, with more severe physical and cognitive issues than individuals with other forms of FASD,18 those with Partial FAS and ARND tend to show the most severe secondary disabilities.19 FAS alone costs the United States approximately $5.4 billion each year in direct and indirect costs.20 It is also the leading cause of non-genetic intellectual disability in the United States.21
Partial FAS includes some of the signs and symptoms of full FAS but not all.22 Individuals with Partial FAS typically still present with physical and emotional deficits, but do not have all of the physical characteristics listed in the FAS diagnostic guidelines. ARND includes central nervous system abnormalities and other cognitive/behavioral problems, but none of the outward physical abnormalities.23 Individuals with partial FAS and ARND present with cognitive issues that can be as severe as those seen in FAS. ARBD is a rarely-used diagnosis that only identifies alcohol related physical abnormalities outside the central nervous systems (e.g., skeletal or organ abnormalities).24
The prevalence of full FAS and FASD has been examined in several studies. In one, the prevalence of full FAS in the U.S. was estimated at 0.5-2.0 cases per 1000 births.25 The estimated rate of alcohol-affected births was estimated to be 5 to 10 times higher, close to 1% of newborns.26 A more recent study reported the FAS prevalence in the U.S. to be at least 2 to 7 cases per 1000 births, with all levels of FASD estimated as high as 2-5% among younger school children.27 There is currently an NIAA initiative to establish more accurate estimates of FASD prevalence.
12 It is important to note that FASD is not a diagnosis; it is a broader category of related diagnoses. 13 National Institute on Alcohol Abuse and Alcoholism, supra note 2.
14 Id. at 2.
15 Id. at 1.
16 Id.
17 Id.
18 Id.
19 Streissguth, A., Barr, H., Kogan, J., & Bookstein, F. (1966). Understanding the occurrence of secondary disabilities in clients with fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE). Final Report: Centers for Disease Control and Prevention Grant No. R04/CCR008515.
20 National Organization on Fetal Alcohol Syndrome, FASD: What Everyone Should Know, http://www.nofas.org/MediaFiles/PDFs/factsheets/everyone.pdf.
21 National Institute on Alcohol and Abuse and Alcoholism, The 10th Special Report to the U.S. Congress on Alcohol and Health: Prenatal Exposure to Alcohol, No. Publication No. 00-151583 (2000); Amy M. Schonfeld, Blari Paley, Fred Frankel, and Mary J. O’Connor, Executive Functioning Predicts Social Skills Following Prenatal Alcohol Exposure, 12 CHILD NEUROPSYCHOLOGY 439 (2006).
22 National Institute on Alcohol Abuse and Alcoholism, supra note 2, at 1.
23 Id.
24 Id.
25 NIH Fact sheet; P.A. May & J. P. Gossage, Estimating the prevalence of Fetal Alcohol Syndrome: A Summary, 25 ALCOHOL RESEARCH & HEALTH 159 (2001).
26 Diane V. Malbin, Fetal Alcohol Spectrum Disorder (FASD) and the Role of Family Court Judges in Improving Outcomes for Children and Families, JUVENILE & FAM. CT. J. 52 (2004).
27 Philip A. May, J. Phillip Gossage, Wendy O. Kalbert, Luther K. Robinson, David Buckley, Melanie Manning, and H. Eugene Hoyme, Prevalence and epidemiologic characteristics of FASD from various research methods with an emphasis on recent in-school studies. Dev Disabil Res Revs, 15: 176-192 doi: 10; 1002/ddrr.68 (2009).
3
The intent of this Resolution is to spur development of programs for those living with FASD and their families. This should especially include youth transitioning from foster care and juvenile justice systems, since those with FASD are especially vulnerable to physical and sexual abuse. One study of over 400 individuals with FASD found that 72% had been abused, either physically or sexually.28
Cause of FASD
FASD is caused by prenatal alcohol exposure. There is no safe amount of alcohol to drink during pregnancy, and even small amounts of alcohol may have an impact on fetal brain development.29 A U.S. Surgeon General’s 2005 advisory states that: pregnant women should not consume alcohol during pregnancy; pregnant women who have already consumed alcohol while pregnant should stop to minimize risk; and women who are considering becoming pregnant should not drink alcohol.30 In addition, former Surgeon General Carmona recommended that health professionals routinely ask women of child bearing age about their alcohol consumption and advise them not to drink during pregnancy, noting that this is of particular importance since about half the births in the United States are unplanned.31 Many professional medical association guidelines also indicate that women should not drink alcohol during pregnancy.32
Although any prenatal alcohol exposure presents a risk, there does seem to be a correlation between the amount of alcohol a woman drinks during pregnancy and the likelihood her child will have FASD.33 Some women who consume alcohol heavily during pregnancy do not have a child with FASD.34 However, typically, the more a woman drinks during pregnancy, the higher the risk her child will have FASD and the more severe that child’s symptoms will be.35
Diagnosis and Treatment
There are several diagnostic guidelines for FASD, each of which list characteristics required for a FAS, partial FAS, ARND, or ARBD diagnosis. Despite these guidelines, there are still challenges to diagnosing individuals with these disorders. It may be particularly difficult to diagnosis less severe cases of FASD. Individuals with FASD do not always present with observable physical characteristics, making it more difficult to diagnose them.36 In addition, one of the most helpful ways to diagnose FASD is when there is confirmed prenatal alcohol exposure; however, mothers are often reluctant to admit they drank alcohol during pregnancy due to a sense of guilt or shame.37
28 Ann Streissguth, Attaining Human Rights, Civil Rights, and Criminal Justice for People with Fetal Alcohol Syndrome, TASH NEWSLETTER, September 1998, at 18.
29 U.S. Surgeon General, Surgeon General’s Advisory on Alcohol and Pregnancy, 2005, available at http://www.surgeongeneral.gov/pressreleases/sg02222005.html; Claire Coles, Discriminating the Effects of Prenatal Alcohol Exposure From Other Behavioral and Learning Disorders, 34 ALCOHOL RESEARCH AND HEALTH 42 (2011).
30 U.S. Surgeon General, Surgeon General’s Advisory on Alcohol and Pregnancy, 2005, available at http://www.surgeongeneral.gov/pressreleases/sg02222005.html.
31 Id.
32 See e.g., American College of Obstetricians and Gynecologists.
33 Susan E. Maier & James R. West, Patterns and Alcohol-Related Birth Defects, National Institute on Alcohol Abuse and Alcoholism, available at http://pubs.niaaa.nih.gov/publications/arh25-3/168-174.htm.
34 This may be due to a number of factors including, but not limited to, genetic susceptibility, maternal metabolism, drinking patterns, 35 Maier, supra note 33.
36 Malbin, supra note 26.
37 Kenneth Lyons Jones & Ann P. Streissguth, Fetal Alcohol Syndrome and Fetal Alcohol Spectrum Disorders, 38 J. PSYCH & L. 373 (2010).
4
Individuals with FASD may have IQs that are in the average range and appear to have good verbal skills, making it more difficult to recognize FASD.38 Although these individuals may not have obvious symptoms or characteristics, they typically exhibit adaptive behavior and other deficits that make it difficult for them to function at an age appropriate level.39
There is no cure for FASD, and the deficits associated with these disorders follow children into adulthood.40 That being said, early intervention and treatment services may improve a child’s development. Strategies include medication for some symptoms, behavioral and educational therapies, special education, social services, and the support of a nurturing and loving environment.41 These interventions are most effective when a child is diagnosed before age 6.42 Children with FASD who were involved in intervention programs to improve social skills showed improvements in both knowledge and behavior.43
It is critical that comprehensive resources be allocated for early identification, diagnosis, intervention, and treatment for those with FASD. Given the array of problems individuals with FASD face, and the importance of early intervention, it is vital that professionals become aware of the issue so that appropriate services can be provided.
Impact on the Justice System
Children with FASD are at high risk of getting into trouble with law. One study looked at FASD in alleged juvenile offenders in British Columbia, Canada during 1995. All youth from the juvenile court who were sent to the Inpatient Assessment Unit for purposes of a psychological and psychiatric study were also assessed for what was then called FAS/FAE and is now called FASD. Of the 287 youth seen over a year’s time, 23.3 % had an alcohol-related diagnosis (FASD). The authors also found, among youth in juvenile facilities, an astounding 40 times the expected rate of individuals with FASD.44
Individuals with FASD have executive functioning issues that result in difficulties socializing with peers, sharing, and managing conflicts.45 This can result in rejection, which leads to a higher probability of individuals with FASD associating with other rejected children and a higher probability that they will be involved in delinquent behaviors and have problems with the law.46
A large study at the University of Washington found that about 60% of individuals with FASD had a history of trouble with the law and 50% had a history of confinement in a jail, prison, residential drug treatment facility, or
38 Natalie Novick Brown, Anthony P. Wartnik, Paul D. Connor, and Richard S. Adler, A Proposed Model Standard for Forensic Assessment of Fetal Alcohol Spectrum Disorders, 38 J. OF PSYCH. & L. 383, 387 (2010).
39 Kathryn Page, The Invisible Havoc of Prenatal Alcohol Damage, J. CENTER FOR FAM. CHILD. & CTS. 1, 10-11 (2002).
40 Blair Paley and Mary J. O’Connor, Neurocognitive and Neurobehavioral Impairments in Individuals with Fetal Alcohol Spectrum Disorders: Recognition and Assessment, 6 INT’L J. DISABIL. HUM. DEV. 127, 130 (2007).
41 Id.
42 Id.
43 Mary O’Connor et al., A Controlled Social Skills Training for Children with Fetal Alcohol Spectrum Disorders, 74 J. CONSULTING & CLINICAL PSYCH. 639, 646 (2006).
44 Malbin, supra note 26, citing Julianne Conry and Diane K. Fast, Fetal Alcohol Syndrome and Criminal Justice, BC: Fetal Alcohol Syndrome Resource Society (2000); see also, Diane K. Fast, Julianne Conry, and Christine A. Loock, Identifying Fetal Alcohol Syndrome Among Youth in the Criminal Justice System, Developmental and Behavioral Pediatrics, v. 20(5), October 1999.
45 Schonfeld, et al., supra note 21, at 450.
46 Id.
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psychiatric hospital.47 The average age children with FASD begin having trouble with the law is 12.8 years.48 This may be in part due to the fact that children with FASD are easily led by others and tend to be impulsive.49 Individuals with FASD have various characteristics that put them at a greater risk of ending up in the criminal justice system. For example, as was mentioned, they are typically impulsive and have difficulty predicting the consequences of their actions.50
In addition, given their executive functioning problems, these individuals may not always have the legal capacity to commit deliberate/intentional crimes.51 Given these characteristics:
…[i]n the criminal context, FASD-associated problems in reflection, forming intent, and carrying out effective goal-directed behavior are directly relevant to mental state…their behavior often breaks down or decomposes in novel high-stress situations…This decomposition often leads to instinctive fight or flight reaction…neglecting previous learning experiences, consequences, and impact on themselves and others.52
Several issues surrounding individuals with FASD in the justice system include competency to stand trial, validity of expert testimony,53 and mitigation during sentencing.54 Individuals with FASD may not understand charges.55 Since individuals with FASD cannot always form the requisite intent required for certain crimes and do not fully understand the consequences of their actions, defendants with FASD may face diminished capacity issues.
In Dillbeck v. State, the court held that FASD should be considered in the guilt/innocence phase of the trial as well as in sentencing, noting that:
… Evidence concerning certain alcohol-related conditions has long been admissible during the guilt phase of criminal proceedings to show lack of intent … then so too should evidence of other commonly understood conditions that are beyond one’s control … [w]e perceive no significant legal distinction between the condition of epilepsy… and that of alcohol-related brain damage in issue here both are specific, commonly recognized conditions that are beyond one’s control.56
This is significant because the court recognized the benefits of considering FASD during both the trial phase and during sentencing.
Confirming a diagnosis of FASD may be critical in designing a sentence or sentencing alternative that will be effective in reducing the risk of recidivism and will avoid causing far greater harm to a defendant with FASD than to a defendant without this disability. Because of their impairments, individuals with FASD, when confined in a jail or prison, can be more vulnerable than those who are not disabled to physical and sexual abuse, and consequently more adversely affected than others.57
47 Natalie Novick Brown, Anthony P. Wartnik, Paul D. Connor, and Richard S. Adler, A Proposed Model Standard for Forensic Assessment of Fetal Alcohol Spectrum Disorders, 38 J. OF PSYCH. & L. 383, 384 (2010).
48 Id.
49 Natalie Novick Brown, Gisli Gudjonsson, & Paul D. Connor, Suggestibility and Fetal Alcohol Spectrum Disorders: I’ll Tell You Anything You Want to Hear, 39 J. OF PSYCH. & L. 39 (2011).
50 Substance Abuse and Mental Health Services Administration: A Fetal Alcohol Spectrum Disorders Center for Excellence. What You Need To Know: Fetal Alcohol Spectrum Disorders and Juvenile Justice: How Professionals Can Make a Difference. DHHS Pub. No. (SMA)-06-4240 (Rockville, MD: 2007).
51 Brown, et al., supra note 49.
52 Brown et al., supra note 47.
53 See State v. Brett, 126 Wash. 2d 136, 892 P.2d 29 (1995); Castro v. State of Oklahoma, 71 F.3d 1502 (10th Cir. 1995) (discussing who can determine a whether an individual has FASD when it in unknown if the mother drank alcohol during pregnancy).
54 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services, Fetal Alcohol Spectrum Disorders and the Criminal Justice System, available at http://www.samhsa.gov.
55 See Dunn v. Johnson, 162 F.3d 302 (5th Cir. 1998); People v. Flemming, 2003 WL 21675890 (Mich. App.); State v. Lee, 220 Wis. 2d 716, 583 N.W. 2d 674 (Ct. App. Wisc. 1998).
56 Dillbeck v. State, 643 So. 2d 1027 (Fla.).
57 Kathryn A. Kelly, “Fetal Alcohol Spectrum Disorders and the Law,” in Prenatal Alcohol Use and FASD: Diagnosis, Assessment and New Directions in Research and Multimodal Treatment (Susan A. Adubato and Deborah E. Cohen, eds), 2011.
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In recent years, FASD has been offered as a mitigating factor during sentencing; there are many death penalty cases in which the defendant’s history suggests FASD and a diagnosis of FASD has been persuasive to juries as an explanation for otherwise inexplicable behavior. Also, in Atkins v. Virginia, the U.S. Supreme Court held that executing an individual with an intellectual disability violates the Eighth Amendment.
In some cases this will exclude the defendant with FASD from eligibility for the death penalty. However, if an I.Q. score of 70 or below, as many states define intellectual disability, is what disqualifies a defendant from the death penalty then most of those with FASD, because of their typically higher scores, would not be covered by Atkins.58
Children and adults with FASD are becoming involved in the justice system at an alarming rate. The unique characteristics of these individuals warrant additional attention.59 This Resolution encourages increased awareness of FASD among attorneys, judges, other court professionals, and court appointed advocates. These individuals are urged to utilize existing screening tools to identify clients with FASD.
Attorneys, judges, bar associations and law school clinical programs, as well as all other persons and entities involved with youth at risk, juvenile justice, or adult criminal court, should also support training and develop enhanced awareness and understanding of FASD. This can be accomplished by collaborating with medical, mental health, and disability experts on training to enhance representation for individuals with FASD. Current initiatives that strive to achieve such successes are discussed later in this Report and can be used as potential models.
Courts should also be considering FASD disability as a factor in mitigation with juvenile and adult offenders during sentencing, particularly where the death penalty is an option. This mitigating factor should also be applied when considering alternatives to incarceration, including therapy, community-based programs, and other non-custodial measures, in order to rehabilitate the individual and reduce recidivism.
Impact on the Child Welfare System
A large study of over 400 individuals with FASD, ranging from age 6-51, resulted in various concerns about human rights, civil rights, and criminal justice system involvement for individuals with FASD.60 An astounding 80% of children in that study had not been primarily raised by a biological parent.61 In addition, 12% of children and 60% of adolescents experienced significant school disruptions.62 This statistic is especially disturbing since children with FASD already face heightened academic challenges based on several of the mental and behavioral characteristics associated with FASD. It is clear that children with FASD are part of the “at-risk” population and should have access to special programs and services.
There are a disproportionate number of children with FASD in the foster care system; the rate of FAS in the foster care system is 10-15 times higher than in the general population.63 In the United States, an estimated 70% of children in foster care are affected by some type of prenatal alcohol exposure.64 This is particularly
58 Atkins v. Virginia, 536 U.S. 304 (2002).
59 Timothy E. Moore & Melvyn Green, Fetal Alcohol Spectrum Disorder (FASD): A Need for Closer Examination by the Criminal Justice System, 19 CRIM. REPORTS 99 (2004).
60 Ann Streissguth, Attaining Human Rights, Civil Rights, and Criminal Justice for People with Fetal Alcohol Syndrome, TASH NEWSLETTER, September 1998, at 18.
61 Id.
62 Id.
63 SJ Astley, J Stachowiak, SK Clarren, & C Clausen, Application of the fetal alcohol syndrome facial photographic Screening Tool in a Foster Care Population, 141 J. Pediatrics 712 (2002).
64 The National Organization on Fetal Alcohol Syndrome, FASD in the Foster Care System, http://adp.ca.gov/women/pdf/FASD_in_the_Foster_Care_System.pdf

worrisome because children with FASD benefit from having a stable environment, a comfort that is, unfortunately, not available for many children in foster care.
Children in foster care are already at high risk for educational disruptions as well as behavioral and developmental issues. This is exacerbated when that child has FASD. It would be beneficial to provide training and education to foster parents on how to identify the behaviors associated with FASD, how to seek a diagnosis of the disability, and how to appropriately respond to characteristics and behaviors associated with FASD. This training could provide foster parents with information about services and programs available for children with FASD.
Full implementation is also necessary for a provision of the federal Child Abuse Prevention and Treatment Act65 that was intended to provide for more effective screening and referral processes for individuals with FASD, in recognition of the importance of addressing the over-abundance of children with FASD in the child welfare system. Fully implementing that Act’s existing mandate of screening and referral processes for children with FASD can help assure their early identification and hopefully prompt access to successful treatment.
Impact on Disability Benefits
Individuals with disabilities may be eligible for medical and cash benefits, such as Social Security Disability, based on their disability. Children and adults with FASD may be eligible for such benefits, but a diagnosis of FASD does not create an automatic entitlement66 and they will be required to meet statutory criteria, and establish that such impairment exists.67 In some cases, individuals will be required to prove that FASD severely limits their work activities, which may not be the case for many individuals with FASD.68
Individuals with FAS or more severe FASD symptoms will have an easier time proving they are eligible for benefits. That being said, even individuals with severe cases of FAS may face difficulties establishing their eligibility because the system is complex and often difficult to navigate.69 Also, state law and policy may not list FASD related impairments within their definitions of “developmental disabilities.”70 Individuals who seek attorney representation may have an easier time establishing eligibility and gaining access to disability benefits that will improve their quality of life.
It is important that FASD, alcohol-related neurological disorders, alcohol-related birth defects, and the effects of fetal alcohol exposure generally, be included within statutory definitions of developmental disabilities and listing of conditions that provide medical and other benefit coverage for screening, diagnosis, and treatment for those with these conditions. Law and policy makers should ensure that individuals with FASD are eligible for disability benefits and appropriate medical services. Eligibility and utilization of these benefits and services will help improve the lives of individuals with FASD, especially youth and those transitioning out of the foster care or juvenile justice system.
65 42 U.S.C. 5106a (b)(2)(B).
66 Amy Gilbrough, Eligibility for Social Security Benefits: Fetal Alcohol Spectrum Disorders, in Alcohol Related Birth Disorders and the Law: How Should Attorneys & Judges Respond to FASD?, Continuing Legal Education Materials (Feb. 3, 2012).
67 Id.
68 Id.
69 Id.
70 One state law that does include FASD as a “related condition” within the definition of developmental disabilities is Minnesota Statutes §252.27.

Current Initiatives
There are many beneficial programs and initiatives in the United States focusing on increasing awareness of FASD among legal professionals, identifying individuals with FASD in the justice system, and ensuring that these individuals receive appropriate and necessary services. This section highlights two of these initiatives.
Seventeenth Judicial District Juvenile Court FASD Project
The Juvenile Court of Colorado’s 17th Judicial District’s FASD Project is working to increase awareness of FASD among judicial officers, attorneys, and court appointed advocates and use referrals as an effective tool for children in the child welfare system.71 The FASD Project screens children in the Juvenile Delinquency and Child Welfare Courts of Adams and Broomfield Counties for prenatal substance exposure.72 By integrating FASD screening, diagnosis, and intervention within the court system, the FASD Project is working to improve the lives of children and youth with FASD. 

The FASD Project’s key strategies are:

  •   To integrate FASD screening into Juvenile Court;
  •   To refer children to a diagnostic center for evaluation and a possible diagnosis;
  •   To meet with key players in the child’s life, including parents, case workers, and probation officers, to
    develop individualized case plans for children with FASD; and
  • To track data and monitor the success of this project.

The FASD project is so important because “it is identifying, supporting and tracking outcomes for children and youths who would otherwise have a high likelihood of failing in school, experiencing multiple placements, and re-offending or violating probation.”73 This project provides the necessary care for children with FASD while increasing awareness among professionals who work with these individuals to ensure that the appropriate care and services are provided.
Alaska FASD Partnership
The Alaska FASD Partnership is a statewide coalition of over 75 organizations and individuals working to prevent FASD and improve access to services for individuals with FASD. The mission of the partnership is “[t]o promote awareness, prevention, and effective life-long interventions for those affected by prenatal exposure to alcohol and their families.”74 Through seven workgroups, the partnership has been able to identify gaps and barriers to services for individuals with FASD.75 The workgroups develop policy and funding recommendations and strive to increase awareness about this issue.
In 2010, the partnership’s first year, they were integral in establishing state funding for substance abuse treatment programs for pregnant women, parent navigation services, and greater access to services for individuals with FASD.76 The workgroups are currently addressing several important issues, including prevention of FASD, diagnosis and access to services, the impact of FASD in the legal and education systems, and professional development.77 Identifying these issues and establishing best practices will ensure better services and care for individuals with FASD. 

71 Seventeenth Judicial District Juvenile Court FASD Project, Project Summary, http://www.fasdcenter.com/files/17thJudicialDistrictColorado-Article.pdf.
72 Id.
73 Id.
74 Advisory Board on Alcoholism and Drug Abuse, Alaska FASD Partnership, http://www.hss.state.ak.us/abada/fasd.htm. 75 Id.
76 Id.
77 Id.

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#55 Days To FASDay – Let adults living with Fetal Alcohol speak out


Create an adults with FASD panel to share information at your local conferences and events. They have ALOT to teach us!

Listen to the Minnesota Organization on Fetal Alcohol Syndrome Adult panel speak about what it is like to live with FASD. Find adults in your community that are willing to speak our and develop your own adult parent. Those who live daily with the challenges need to be heard – create a voice for your voiceless.

Read a book and learn the realities of being an adult with FASDs.

“This is a book that commands attention and one that influences us to support speaking up in defense of the un-born. Braided Cord, Tough Times In and Out is a must read for professionals in the medical, social service and re-hab fields.” 

 Sara Hassler, Midwest Book Review

Midwest Book Review by SARA HASSLER REVIEW 6-25-2010

Braided Cord, Tough Times In and Out
Liz Kulp, Author
Better Endings New Beginnings
978-0984200719, $24.95, www.betterendings.org
Liz’s website www.braidedcord.net to order direct from author! 
Award winning author Liz Kulp brings another outstanding literary work of art to the market in her book Braided Cord, Tough Times In and Out.
Liz Kulp is a 23 year old woman who was born with Fetal Alcohol Spectrum Disorder (FASD) as a result of her birth mother drinking while pregnant. As a child, Liz was in the foster care system and soon adopted at a very young age by Karl and Jodee Kulp and their family. Throughout her young life Author, Liz Kulp, kept journals and her new book, Braided Cord, is the published in-depth account of her life living with FASD. Her openness to share her feelings, her world and what the inside of her body and brain feels like is beyond brave. She is a modern day super hero who overcomes daily struggles to live in a society that does not see or fully understand her disability.
Liz Kulp takes her readers on an incredible journey deep inside the world of a sensitive growing teen and eventual mature woman who shares herself openly and completely. Fast paced, emotional and full of life lessons, readers can look forward to learning what it’s like to live with Fetal Alcohol Spectrum Disorder from Ms. Kulp’s amazing life experiences.
In order to help society change for the better, Author, Liz Kulp has stripped herself naked for all the world to see. She has stood alone, with her family, and before all of us, to teach us how important it is to not drink while pregnant. We applaud Liz. Kulp for her choices to persevere and reach out in order to save millions of innocent soon-to-be-born babies.
Author, Liz Kulp, pieces together diary entries in her book, Braided Cord, Tough Times In and Out. Dated logs from herself, her parents, life coaches, supportive partners and organizations make up her easy to read chapters. Reading Braided Cord is like stepping into Liz Kulp’s shoes. To be a witness to a disability that you cannot see or touch and to understand another human being’s world is a gift that Ms. Kulp delivers on. Kulp’s audience has the chance to sit in a pampered setting as they spiritually travel her life path. Step by step, her readers are exposed to the disturbing effects that alcohol has on the human brain, the trauma it causes families, the pain it inflicts on innocent children and the burden it places on our society. Through Liz’s life, we have a chance to learn, to grow and to be a part of saving lives. Her voice and written words are clear, exact and honest. Liz Kulp has made it possible for other children and families dealing with Fetal Alcohol Spectrum Disorders to open up, share their stories so they too can transition into the world as healthy and productive individuals.
Ms. Kulp includes an appendix with resource information for her readers to learn more. There is an enormous amount of instruction included on what Fetal Alcohol Spectrum Disorder is and how communities can help, schools can teach, people can understand and medical staff can identify it. Parents, Karl and Jodee Kulp, along with the support of their family, speak about the horrifying effects that FASDs has had on their lives, work and what their future holds. Every gut-wrenching stone has been turned and thrown against the wall in order to reach readers in a way that provokes positive change.
This is a book that commands attention and one that influences us to support speaking up in defense of the un-born. Braided Cord, Tough Times In and Out is a must read for professionals in the medical, social service and re-hab fields. Libraries who want to expand their reading programs and booksellers who are involved in book clubs will greatly profit from sharing this educational and inspirational book with their patrons and communities.
Sara Hassler
Midwest Book Review

For those who have read Braided Cord Tough Times In and Out we are pleased to update you on a successful interdependence – Liz has come so far and offers insight and hope to others who struggle on this challenging journey.  – The Kulp Family

Best I Can Be – Living with Fetal Alcohol – by Liz Kulp, age 13, how I feel in my brain
Our FAScinating Journey – by Jodee Kulp and Liz Kulp, homeschool and brain based learning
Best I Can Be – Tough Times In and Out – by Liz Kulp, age 23, adult transitioning

Read more articles from Adults living with FASD


Online Manual – www.fasday.com
Seminar – Or try our easy, effective, exciting 1½ hour program that walks you
 through the morning of Sept.9: http://www.come-over.to/FASDAY/ABCDEFG/ 
(material from 2002 has excellent ideas)


Follow us through the next 60 days and plan your local or personal project to build awareness of fetal alcohol spectrum disorder – Each One Can Reach One!

Need family support visit www.toolboxparent.com
Need ideas for adults living with challenges of FASD visit www.braidedcord.net
Need information on fetal alcohol spectrum disorders visit www.betterendings.org
Interested in service dog for FASD visit www.thechancerchronicles.com