How Texting Can Help Persons With #FASD and #ASD

TEXT TO SUCCESS
with FASD

See It,
Write It,
Remember It. 

Guest Blogger
Ann Yurcek, author Tiny Titan Journey of Hope

To see more of Ann's great articles visit her blog

With my kids with organic brain damage from their prenatal exposures along with all the other alphabet soup of diagnoses, I have learned that they learn better by seeing what they need to do. 

Many of our kids can have normal IQ's and can handle more concrete learning information.  Often they do well early in their school years on when the information is presented in a CONCRETE easily understood format.

God gave me the gift of understanding that my children use visual memory much better than any other medium of getting things to stick. They can remember vividly what someone was wearing, what they did, and all sorts of information from an event. But cannot remember some of the simplest other things.

Think in the terms of a camera. They can capture the images they see, but they can't see themselves so they never know what they did.  (Another blog post for another day).  But what that taught me was to help them see just like they now are teaching in autism with picture prompts etc.  I used simple notes, cannot be too complex or they shut down and are overwhelmed.  Short and sweet, concrete and to the point.

For years I have been teaching teachers, principals and anyone who works with my kids if they want them to remember something they need to TALK LESS and use a simple bullet reflection system to help them see and retain the information into their memory.  Talking to my kids the message becomes jumbled and often lost in translation as it processes through their damaged brains.

My house became a series of notes put up as reminders. There were times even though still needed the kids removed them as they didn't want to be treated differently or have their friends see anything that will get them noticed for being a different.

Often kids/adults with FASD have auditory processing disorders. But in our world and society we talk too much. When I talk to my kids with FASD I have to talk simply, with three or four words with a slight pause which allows their brains time to process the information that I give them.  Then double check for understanding.

If I wanted my child to bring me or put something away right I would use a post it note reminder. Go get me french fries from the freezer.  I had to do something as too many times they got to the freezer and brought in corn instead of peas. or whatever and it ended it in my frustration and their feeling bad that they got it wrong.

I know that my adult kids can remember what they receive via text message, what took me so long to get on the text to remember kick?

Becca and Dee have been texting each other room to room. They were texting in the same room the other day. I wondered why?  Becca figured out Dee understood instructions better texted than communicated. It took Becca with her Autism and understanding of not hearing what is being said in a room full of too much noise for her to know what to do to help Dee understand instructions.

I was talking with a friend lately and talking about we talk to much. She has been emailing her daughter with discussions instead of deep conversations and they seemed to make a difference in her understanding and her remembering.

LIGHTBULB moment:  With our teens and young adults we need to use their mediums to help them.

I just tried an experiment. I texted Dee up in her room and asked her if she could please make Mac a bottle.  I received a reply, I am all the way up here!  I texted back that I was writing and I would really appreciate her helping me. Okaaaay.

 Normally anything you tell Dee needs many steps going like this.
1. Ask her to do a simple chore.
2. Wait 3-5 minutes to see if it processes and is understood by asking the question again.
3. Now wait 3-5 minutes to see if she responds.
4. Carefully prompt her again if not moving.
5. Double check for understanding.

To make the said bottle would require me to have 15 to20 minutes of intervention. Not because she is being oppositional like so many would think. It was just because it would take that much intervention and complex processing for her to be able to hear it, transition, and get moving.

The bottle arrived in less than 5 minutes.

Want something done, want them to remember, quit talking so much and put it in writing.

TEXT to SUCCESS.  But first sign up for UNLIMITED TEXTING.

The Innocents... FASD.... Victims

The Right to a Healthy Brain

GUEST POST by ANN YURCEK -
award winning author Tiny Titan
Keeping Up with the Tiny Titan -
original post April 3, 2013


I was talking with a friend today about a conversation with Miss Dee who was talking about her FASD.

"Why did she and Little Guy not have the right to be born with healthy brains?"   

How can I answer that question?

We  were venting about the unfairness of FASD.  Those who have FASD are innocent victims. Innocent Victims of being exposed to alcohol prenatally and further victimized by the lack of appropriate services. There is no place for people on the spectrum to fit. Mental Health services, Developmental Disabilities, Autism, are the silos where they can garner support for their prenatally acquired brain injuries. But for many who are on the spectrum they "just" don't fit. FASD is not even in the DSM as a disorder. So many service silos require a fail first mentality, you have to fall so far to get any help. We need preventative early intervention services from birth on and life long support for those affected.

For the fortunate few, they can fit someplace. They fit on the DD if their IQ's are low enough, or on the Autism Spectrum if they have enough social inadequacies or sensory issues, or on the Mental Health Spectrum when they have floundered and failed enough to fall into secondary mental health issues. People who have a Traumatic Brain Injury have a silo to garner services, but not FASD.

But also, why can't we get help for those with FASD's. It is a shame based disorder. Most will not get diagnosed to the root cause. It is OK to have ADHD, ADD, Autism Spectrum Disorders, LD ( learning disability), or other mental health problems in our society. But to get diagnosed, there has to be confirmation of drinking alcohol during the pregnancy which then becomes someones fault. In our legalistic society, we blame the parents, we blame something for outcomes.  What parent is brave enough to admit they caused their child's brain injury? There are a few courageous Parents who love their child enough to do it. But most who are diagnosed are not the families of origin.

Kids from the foster care system or adopted from one of the countries known for their alcohol comsumption are sometimes fortunate enough to get diagnosed at a good diagnostic center. But many will still be missed. For many of the others, it is the other "little" d's that they will be their umbrella.  ADHD, ADD,  ODD (Oppositional Defiance Disorder), AD, SID, ASD, BD, DD, OCD, LD. So many little d's that they will find a label, but never the underlying cause.

But finding the root cause does not help our kids/adults,if we can be fortunate enough to find a diagnosis. They still will have to be served under one of the umbrella's that often times are a poor fit.  Many will not.

But there is no place for them to find supportive services that really address their unique needs.  They are often too bright to feel comfortable but will not qualify for services under the Developmental Disabilities Category. They are not Mentally Ill enough to qualify for MH services until they really fall apart. Sometimes when their predisposition for Substance Abuse Issues gets them addicted enough, they may qualify for their services, but they can't manage to learn and keep the sobriety they teach.

Many a parent calls who have that young person who barely passed high school, who cannot hold a job, they may or may not have gotten special education services and they were adopted or live with a kinship caregiver and know that their young person has been prenatally exposed and they are floundering on where to go next. They do not have enough documentation or they have been held together by the families support and they know that their loved one cannot make it on their own. They want to know what to do, where to go for help? 

I have heard some professionals who actually think these kids can outgrow their Fetal Alcohol Spectrum Disorders???   There were those who told me that it was TOO LATE to help my children and just write them off.

We need HOPE, we need HELP, and we need to recognize FASD.

They were innocent victims of prenatal alcohol exposure and they will pay a lifelong price for their mother's drinking. 

5 Heart Smart Steps for Anger Management

Five Heart Smart Steps for Anger Management

Conflict happens to everyone. 

For persons with hidden differences these conflicts can be invisible until there are so many that the person explodes. One hurt builds upon another hurt and no one sees it happening. Conflict self-care is an individual responsibility, but how can we manage it before it grows out of control especially if we deal with FASD, ADHD, SID, ASD and all those other silly D's.

Some of the things that may cause hidden conflicts others do not see or understand:

• When I am blamed for something I didn't do, it is easy to immediately go on the defense because I am not able to confidently dance verbally around the reality. I don't know what words to use to protect myself so I go off to keep the person away.
• When someone uses a big voice instead of speaking to me with kindness, I can feel the hard or aggressive tone and when I feel that tone I am triggered. It is different coming from a woman or a man. From a man it is deeper and I may be triggered quicker because I believe at that moment they are being mean and I react to protect myself. I go into defense to defend myself and I do it without thinking I simply react. With a woman when the voice is firm or bratty, it doesn't make my heart jump so I am not on automatic snap, but I may still be rude to give myself time to think about what just happened. 
• When plans are quickly changed it is overwhelming and frustrating because I have worked my schedule around the situation, and navigated  to get there which can be very difficult on public transportation or relying on another person. I even have to sometimes reschedule my medication times to make an appointment work, so I can be functional at that appointment. I know people without my differences don't understand the extreme rudeness change is for me and how it affects my life.  

1. When your heart is upside down - BREATHE first!

BREATHE - Something has turned your heart upside down... frustration, confusion, bully behaviors, overwhelming situations or just life in general. Realize emotions you may consider negative like anger and pain are not always bad.  

• BREATHE deeply into you belly until you can hold no more air think 'I can get through this, I can handle this, I can do this.' (One way is to count in 7 short breaths)
• BREATHE out your feelings of hurt or anger until you have no air left in your lungs and you need to take another breath. Repeat. (One way is to blow out 8 - 1 long breath and the 7 short breaths)
• Do this as many times as you need to... Repeat - repeat - repeat

If breathing is not working - 

2. Place your hands together and press hard

PRESS YOUR HANDS TOGETHER HARD (like praying flat hands) AND BREATHE- Continue breathing and press your hands together hard. This is when I say "_______, give me love, peace, joy and understanding." 

• RAISE YOUR PRESSED HANDS ABOVE YOUR HEAD AND BREATHE  -  This helps the tightness I feel in my shoulders, arms and neck. I continue to I say "_______, give me love, peace, joy and understanding." 

• RAISE YOUR PRESSED HANDS ABOVE YOUR HEAD, MAKE A BIG CIRCLE OUT AND BREATHE  -  This helps the tightness I feel in my shoulders, arms and neck. I continue to I say "_______, give me love, peace, joy and understanding" or sometimes by this time I can simply be quiet.... 

If I am still overwhelmed - 

3. Grasp your hands together and hang on for the ride!

GRASP YOUR HANDS TOGETHER (like folded praying hands) AND HOLD ON TIGHT NOW  BREATHE- Continue breathing and grasp your hands together hard. This is when I say "_______, give me love, peace, joy and understanding. Against such things there is no law." Try to relax your hands as you breathe.

• RAISE YOUR GRASPED HANDS ABOVE YOUR HEAD AND BREATHE  -  This helps the tightness I feel in my shoulders, arms and neck. I continue to I say "_______, give me love, peace, joy and understanding. Against such things there is no law." Try to relax your hands as you breathe.

• RAISE YOUR GRASPED HANDS ABOVE YOUR HEAD, MAKE A BIG CIRCLE OUT AND BREATHE  -  This helps the tightness I feel in my shoulders, arms and neck. I continue to I say "_______, give me love, peace, joy and understanding. Against such things there is no law." Try to relax your hands as you breathe. Usually by this time I am ready for a walk or thinking time. 

Open your new heart - 

4. From your praying or grasped hands open your hands into a new heart - now right side up!

• TAKE A MOMENT FOR YOURSELF - Give yourself a pat on the back for stepping through another hard place. Go for a walk, listen to music that is peaceful, look at something in nature that is beautiful to you (clouds, flowers, trees, animals). 

Take the next step - 

5. Reach out to another person and share your new wisdom.  

• IF YOU LEARNED SOMETHING NEW from this experience of riding your anger safely through a cycle let someone you love know what happened, how you managed it, what you plan to do again and what the person can do to help you navigate this if needed. 

  Do the best that you can.

 Each one of us can reach another in kindness and love. 

Do something for another today.

Special thank you to POWER PEOPLE

Sam, Liz and David - for their counsel in the development of this program. 

Please share in fullness with our connections -  2013 Better Endings New Beginnings

visit http://www.betterendings.org

Need to encourage your place of faith to have a
special needs inclusive ministry? Read more

FASD Think Tank - Premiers Blog with Holiday Strategies.

Enjoy our first FASD Think Tank article

  

Holiday Strategies

www.fasdthinktank.blogspot.com 

to help families 

live, laugh and love

 throughout the holidays. 

May your celebrations be filled 

with love and peace. 

Jodee, Liz and Karl Kulp

#6 Days to FASDay - I have a dream. . . .

I have a dream....

That one day little children will not be born with brain damage because of the alcohol they were fed before they were even borm.

I have a dream. . .

That one day persons with inivisible disabilities will not be treated second-class citizens, but will be able to participate in their local communities accepted in their differences

I have a dream. . .

That one day predators and persecutors will not addionally victimize persons with fetal alcohol. That people will realize it is no joke. That the day - to - day struggle is real and cannot be kissed away, or bandaged or ignored.

I have a dream . . .

That one day we will see all people as mattering.

As my young adult daughter says so profoundly, "You can't be handicapped if you are born like that. You just are."

#11 Days To FASDay - Tie Some Knots

Let's Knot to be Silent
INSTRUCTIONS TO TIE YOUR OWN FASKnots

By Bonnie Buxton,
author Damaged Angels
co-founder International FASDay
Re-printed from December ICEBERG 2008

In January of 1999, while digging out from a Toronto snowstorm, my husband Brian Philcox and I realized that September 9, 1999 (9-9-99), would present an opportunity to inform the world that during the nine months of pregnancy, alcohol is dangerous to the baby.

Within 24 hours, Teresa Kellerman of Tucson, Arizona, had contributed her creativity and Internet genius by encouraging volunteers in seven countries and 11 time zones to participate in the first International FAS Awareness Day.

Because every ribbon colour had been taken by other causes, Brian and I spent several hours developing the FASKnot symbol in honor of the first book about Fetal Alcohol Syndrome, Michael Dorris’s "The Broken Cord."

Ten years later, the events continue and now we challenge FASD advocates to take advantage of 2009 to build awareness all year long, particularly on 09-09-09. This year in Canada, FASDay events included a major conference, some candlelight vigils, “mocktail” competitions, breakfasts, luncheons, a play, and one brave woman with ARND speaking out for the first time to a group of university students. Many of these events brought media attention to FASD, building awareness in the community.

Join the movement to Build Better Baby Brains Let's Raise the Standard

Jodee

#22 Days To FASDay - What One Person Can Do?

What can Only One person do?

From Deb Fjeld - a mom of four children with multiple complex issues and webweaver of www.toolboxparent.com

I was feeling frustrated the other day when I was listening to myself complain about the recent funding cuts going through our state. I realized that I have become so obsessed with trying to find grant moneys for programs that I have lost my focus like I had lost my paying job.

I had the "I'm Only One Person" Syndrome.
I felt that if I don't find grant money for programs, that nothing good can happen and I can't make a difference.

Then, I re-framed my thoughts. (My favorite thing to do next rationalization)

What can one person do to help a family who is struggling?

One person can (without a lot of money or no money which we sometime have):

• be a mentor for a child
• offer support to another parent who is struggling
• create a blog to support other parents
• phone a friend who has tough kids and say I appreciate what you do
• operate a web site to help others
• bring a meal to a sick friend
• offer respite for a family who needs a break (even an hour makes a difference!)
• pray for another who needs help
• join a list serve and share ideas
• call a church, school, government center to ring some bells on 09.09
• get a little assembly together on your county courthouse on 09.09 to talk about FASD
• hold a pregnant pause event at a local restaurant, hotel or bar
• send an encouraging email to one, or all on your email list
• write a book!
• invite a few girlfriends out for coffee and relax!
• read our articles on http://www.toolboxparent.com/
• join a disccussion, ask a question, post a great idea to help professionals and parents of complex kids and intense adults at http://toolboxparent.ning.com/
• write a review for an author who raises tough kids - your input really counts
• HAVE FUN FUN FUN - pay attention to the little miracles every day
• start a 501c3 (then you add a few board members and maybe get a grant)

These are things that don't need a grant.
These are things that make an actual difference in another's life, without costing any money.

I have noticed, though, that I receive much more in return than the effort I gave out.

What else can one person do to help another?? Any ideas we would love your comments.

Deb Fjeld and Jodee Kulp

Look what three parents with a single idea pulled off ten years ag0 and it is still continuing to ring our warnings.

FASDay 1999 began in Auckland, New Zealand, where "Minute of Reflection" bells rang at 9:09 a.m., at Mt. Albert Methodist church. Then it moved to Adelaide, Australia, and then to South Africa, where at 9:09 a.m., Cape Town volunteers gathered to hear the War Memorial Carillon that rang when Nelson Mandela was released from prison. Volunteers in Italy, Germany and Sweden held events -- and then FAS Day crossed the Atlantic. Volunteers staged events and bells and carillons rang across Canada and the U.S. The westernmost activity was the community breakfast on the tiny island of Kitkatla, B.C., near the Queen Charlotte Islands, where the village bell rang at 9:09 a.m. followed by prayers in the native tongue by village elders. We missed a few international time zones.

We did it all on $100 in donations, plus thousands of hours of volunteer labor.

It was a labor of love and passionate commitment. We generated as much media attention as a million-dollar public relations campaign, and we made many new friends and supporters in the process. Many women of childbearing age learned for the first time that no amount of alcohol in pregnancy is safe.

All of us knew that in one magic minute, we really did begin to change the world.

Yeah, but...
What can one person do to fight FASD?"

You'd be surprised -- if he or she is working with a world community of people equally committed to eliminating this tragic and totally preventable disorder!

#42 Days To FASDay - Meet Chancer Service Dog for FASD

Learn about service dogs for children with FASD - Meet Chancer the worlds first certified FASD service dog. 

We want to thank Rabbi Harvey and Donnie Kanter Winokur and their children for speaking out boldly to build awareness of FASD. Their dog Chancer (www.thechancerchronicles.com) is the world's first certified service dog for FASD and other wonderful fur partners have been following in his paw steps. Their materials have provided hope and love for many.

The Winokur family offers the following international and national award winning materials to help people understand and love persons with Fetal Alcohol Spectrum Disorders

1. For Siblings of Children with FASD —My Invisible World - My Brother, His Disability and His Dog - by Morasha Winokur    Written by an eleven year old sibling about growing up along side a same age brother discovered at four to have FASD. The Winokur family shares their journey with a service dog for FASDs. Learn about what a canine service dog can do for families with children who have fetal alcohol spectrum disorder (FASD).
2. A Delightful Story for Children ages 3+ - Nuzzle Love Between a Boy and His Service Dog - Audio Book - by Donnie Kanter Winokur - An audio book that warms the heart and builds understanding and a tender age for persons with FASD
3. An Early Reader for Children ages 6-8 - Nuzzle Love Between a Boy and His Service Dog by Donnie Kanter Winokur - A gentle story and FREE Curriculum to build understanding and prevent bully

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)

Click Here For Our Past 60 Links for a Great Fetal Alcohol Awareness Day!

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

Share on facebook

#46 Days To FASDay - Join or create an easy survey

Conduct a Simple Survey or Quiz
Easy to do...

Invite the general public to the 

Million Mind March FASD Awareness 
Link the quiz and invite friends to answer

• How often can a pregnant woman drink alcohol? 

Teen Survey -

• At your high school
• At the local mall
• At your sports events

Conduct a FASD Teen Survey in your community. Just find one teen who knows 20 other teens, and you will be participating in a nation-wide survey. All this takes is a $5 donation to the teen who conducts the survey to pay for 20 mini candy bars.

The survey can be downloaded here.

#52 Days To FASDay - Get the Current Research

GET YOUR FREE FASD
APP FROM CDC -
IT'S GREAT TO HAVE 
ALL THE DETAILS
AT YOUR FINGER TIPS

Stay on top of current statistics and research! 

Provide media interviews and reporters with the newest data.

Thank you for being a part of our Million Mind March to Build Better Baby Brains. The following letter was received by Better Endings New Beginnings - July 19, 2012 - We are offering you an early view today of the report. We appreciate everyone's efforts. 

Dear Partners,

We would like to share with you findings that were published today in CDC’s Morbidity and Mortality Weekly Report (MMWR). The report*, Alcohol use and binge drinking among women of childbearing age – United States, 2006-2010, describes findings from CDC’s Behavioral Risk Factor Surveillance System (BRFSS) examining any alcohol use and binge drinking among pregnant and nonpregnant women of childbearing age (18-44 years) in the U.S. from 2006 to 2010. The main findings from these data analyses are:

·         7.6% of pregnant women (or 1 in 13) and 51.5% of nonpregnant women (or 1 in 2) reported drinking alcohol in the past 30 days.

·         Among pregnant women, the highest estimates of reported alcohol use were among those who were:

o   Aged 35-44 years (14.3%);

o   White (8.3%);

o   College graduates (10.0%);

o   Employed (9.6%)

·         1.4% of pregnant women (or 1 in 71) and 15.0% of nonpregnant women (or 1 in 7) reported binge drinking in the past 30 days. (Binge drinking was defined as having consumed four or more drinks on an occasion at least one time in the past 30 days.)

·         Among binge drinkers, the average frequency and intensity of binge episodes were similar, about three times per month and approximately six drinks on an occasion, among those who were pregnant and those who were not.

·         Among nonpregnant binge drinkers, binge drinking prevalence, frequency, and intensity were highest among those aged 18-24 years.

Alcohol consumption (any use and binge drinking) among pregnant women is still an important public health concern. Pregnant and nonpregnant women of childbearing age who misuse alcohol are an important population for public health interventions. This report helps identify the population of women who engage in risky drinking behaviors and can help target interventions to prevent alcohol-exposed pregnancies.

Because no safe level of alcohol during pregnancy has been established and alcohol is known to cause birth defects, developmental disabilities, and other adverse pregnancy outcomes, women who are pregnant or who might become pregnant should refrain from drinking alcohol. We know that FASDs are 100% preventable if alcohol is not consumed during pregnancy, so why take the risk?

*Reported by: Claire M. Marchetta, MPH, Clark H. Denny, PhD, R. Louise Floyd, DSN, Nancy E. Cheal, PhD, Joseph E. Sniezek, MD. Division of Birth Defects and Developmental Disabilities, National Center on Birth Defects and Developmental Disabilities; Lela R. McKnight-Eily, PhD, Division of Population Health, National Center for Chronic Disease Prevention and Health Promotion, CDC

Fetal Alcohol Syndrome Prevention Team
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention
www.cdc.gov/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)

Click Here For Our Past 60 Links for a Great Fetal Alcohol Awareness Day!

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