Have You Taught Your Children About FASD?

It truly takes a whole village to raise a child! We must ALL work together to help the next generation! I remember once seeing a young girl in a restaurant and she had started to take a drink of wine. I ran up to her and stopped that drink. She said it was the first ‘drink’ she had since she found out she was pregnant. She then went on to say it was her Birthday and she was celebrating. I am always surprised by the lack of knowledge of FASD, but went on to explain even 1 drink can make a life-long permanent change in the brain of a baby, depending on what part of the brain is being ‘developed’ at the time of ingestion. It is truly our responsibility to help others become aware of how their actions will affect others!

“Is it safe to drink a little alcohol while pregnant, such as an occasional glass of wine?

No. According to the CDC and the U.S. Surgeon General, “There is no known safe amount of alcohol to drink while pregnant. There is also no safe time during pregnancy to drink and no safe kind of alcohol.”  According to the American Academy of Pediatrics: “There is no safe amount of alcohol when a woman is pregnant. Evidence based research states that even drinking small amounts of alcohol while pregnant can lead to miscarriage, stillbirth, prematurity, or sudden infant death syndrome.”

When you drink alcohol, so does your developing baby. Any amount of alcohol, even in one glass of wine, passes through the placenta from the mother to the growing baby.  Developing babies lack the ability to process, or metabolize, alcohol through the liver or other organs.  They absorb all of the alcohol and have the same blood alcohol concentration as the mother.  It makes no difference if the alcoholic drink consumed is a distilled spirit or liquor such as vodka, beer, or wine.”  http://www.nofas.org/light-drinking/

Thirty-two years ago we adopted a child with Fetal Alcohol Syndrome.  Her birth Mother was 14 years old.  When we found our little girl when she was 18 months old.  She had no verbal language ability and severe global Apraxia, she was diagnosed with a profound sensory neural loss in her left ear (no functional hearing) and a conductive moderate loss in her right ear. She was unable to stand on her own, was not crawling yet and had a pinched torticollis (which now has left her with hands shaking and a lack of balance).  My heart went out to her and we have spent the last 30 years advocating for her.  She has had a VERY difficult life and continues to have significant problems due to her birth parents being very young, uneducated, and intensely self-involved (as many teens are).

Our children are having babies and they MUST understand the ramifications of even 1 drink while they are pregnant. We are responsible for teaching them.  The time that is the most impressionable to the brain is in the first trimester when many girls do not even know they are pregnant.  Therefore, to a girl that is sexually active everyday must be treated as if today is the day a new life may begin…

The Effects of Subtle FAS:

Fetal Alcohol has a spectrum from mild to severe some of the most mild may look like ADHD but the cognitive effects can be severe and lasting a life time.

  • Learning information and remembering/retaining information
  • Understanding and following auditory, visual or written directions
  • Controlling emotions, highs and lows
  • Communicating and socializing (many times inappropriate)
  • Behavioral concerns ( can be angry and volatile)
  • Daily life skills, such as feeding, brushing teeth, bathing are forgotten
  • No impulse control
  • Not able to learn from their mistakes
  • Auditory Processing problems (unable to understand directions, or listen to more than 1 thing at a time)
  • Attention Problems- Can not stay focused on the topic,
  • Specific Learning Disabilities- Math, Reading Comprehension,

The mild cases are most challenging in some ways, they do not look as if anything is wrong and the individual may even be very bright however, the more subtle brain damage can be the most devastating to an individual.  They know they should be able to learn, that they are different and that they do not have the emotional control that others their age have.

Any alcohol at any time during a pregnancy may have a life-time effect on the baby’s brain.

Do you really want to take a chance on a lifelong disability for your child?  Is that one glass of wine worth the possibilities of FAS?  It is not just YOUR life that is affected.  Your child may look ‘normal’ and have life long cognitive, emotional and psychological damage.

I want to thank our daughter for being so patient with the world…learning how to accept life based on a ‘non-handicapped person’s’ view of what the environment and conditions of the world should be like for her. You have raised us to be more understanding and more compassionate because of your willingness to wait on us to ‘come around’ to your needs. The world will learn someday!  You are a brave girl living with this condition as you put on your huge forgiving smile and continue to struggle daily to learn, live and love…and all because of the pleasure of a few drinks of alcohol for one very young, immature, uninformed girl. I want to promise you sweetie, we will educate the world…because FASD is 100% preventable and it is a horrific burden for all of those suffering with this condition to bear.

Lise’ DeLong, Ph.D., CPCRT

May I Have Another Drink…No You May NOT Even Have 1 Drink…

May I Have Another Drink...No You May NOT Even Have 1 Drink...

It does take a whole village to raise a child! I remember once seeing a young girl in a restaurant and she had started to take a drink of wine. I ran up to her and stopped that drink. She said it was the first ‘drink’ she had since she found out she was pregnant. She then went on to say it was her Birthday and she was celebrating. I am always surprised by the lack of knowledge of FASD, but went on to explain even 1 drink can make a life-long permanent change in the brain of a baby. It is truly our responsibility to help others become aware of how their actions will affect others!

I asked the President of the Northern California Fetal Alcohol Spectrum Disorders group to share her thoughts on FASD and here is what Kathryn Page, Ph.D, wrote:

“FASD has lots of peculiar aspects. One is its envelope, its interface with the rest of the world. In spite of several waves of public awareness campaigns and great avalanches of solid research, this condition does not stick in the minds of public, professional, academic or families–unless they live with it personally. Five percent of us are–to different degrees–burdened with the AD/HD-like symptoms, the sensory overwhelm, the crappy memory and appalling judgment that come with prenatal alcohol damage. Not to mention the profound sense of alienation and shame for not measuring up, when no one understands that you really are trying your hardest.

Five percent is a lot of us. The number is not hard science and it may never be, but very good
research has moved it up from the one percent it used to be. Without identification and intervention (rare indeed), this is the underbelly of our community inhabiting homeless shelters, people’s couches, jails, emergency rooms chronically.

Yet FASD is still not recognized even when the signs are blinking in red neon; “maladaptive behavior” or “unconscious conflict” or “poor parenting” or “fear of success” or “irresponsibility” or
some other misguided claptrap gets stuck on instead. Or the partially correct labels of AD/HD, Bipolar disorder, Learning Disabilities, Attachment Disorder, ODD…partially but uselessly, since that really doesn’t get to it.

My wish is that this condition rise to the level of autism in public awareness and professional competence. Until then families like mine will take our kids to clinician after clinician who will make recommendations that only fire up the frustration further as they backfire or just fizzle, much money spent and hopelessness rises all around.

Clinicians like Lise who are willing and able to see the whole picture are rare and precious.

We are forming a group for Northern California’s parents and professionals interested in bringing about training, diagnosis, intervention and support for families. Anyone who wants to join up is welcome–contact me if you want more information.” 707-996-7846. Kathryn Page, Ph.D.

More about Kathryn Page via her LinkedIn page:

Kathryn is a PhD in clinical psychology, did her internship at Stanford Psychiatry’s Alcohol and Drug Treatment Center, has published research in both hypnotherapy and political trauma (both for Stanford, the latter also in Mexico), and continues to do volunteer work. She is very involved with various collaboratives aimed at bettering the systems for youth/mental health/ education/community. Her interests lie in Restorative Justice and immigration reform as well as improving the well-being of Latino immigrant families.

Kathryn says her real mission in life is to raise awareness and resources around fetal alcohol to the same level that autism currently inhabits. Meanwhile, she reports she is privileged to support the mental health of our immigrant community in Marin County at Canal Alliance–with her love and joy and no small scrappiness!

Thank you so much Kathryn for sharing your knowledge about FASD from a personal standpoint! If any of you have time, interest, concern, or money to share for this cause, please join us.

FASD is a devastating condition that can be avoided altogether… Don’t drink if you are pregnant or have a possibility of getting pregnant!

Get Involved!!!!

Just a Thought by Dr. Lise’

Did You Know Drinking ANYTIME During Pregnancy Can Cause Serious Brain Problems?

Did You Know Drinking ANYTIME During Pregnancy Can Cause Serious Brain Problems?

“Fetal Alcohol Spectrum Disorders- FASD is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects may include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications.” http://depts.washington.edu/fasdpn/htmls/fasd-fas.htm

There are a number of subtypes based on a ‘spectrum’ within this disorder, of FASD, including Partial Fetal Alcohol Syndrome (pFAS), Alcohol-Related Neurodevelopmental Disorder (ARND), Alcohol-Related Birth Defects (ARBD), and Fetal Alcohol Effect (FAE).

Fetal Alcohol Syndrome (FAS): FAS represents the severe end of the FASD spectrum. Fetal death is the most extreme outcome from drinking alcohol during pregnancy. People with FAS might have abnormal facial features, growth problems, and central nervous system (CNS) problems. People with FAS can have problems with learning, memory, attention span, communication, vision, or hearing. They might have a mix of these problems. People with FAS often have a hard time in school and difficulty in social situations.

Alcohol-Related Neurodevelopmental Disorder (ARND): People with ARND might have intellectual disabilities and problems with behavior and learning. They might do poorly in school and have difficulties with math, memory, attention, judgment, and poor impulse control.

Alcohol-Related Birth Defects (ARBD): People with ARBD might have problems with the heart, kidneys, or bones, or with hearing. They might have a mix of these.
http://fasdcenter.samhsa.gov/aboutUs/aboutFASD.aspx

“In general, diagnoses under the FASD umbrella involve a range of clinical manifestations, including physical, behavioral, and/or learning problems. Children with any of the FASDs need to be identified, diagnosed, monitored, and referred for appropriate care and services or further evaluations as indicated. Effects related to each of the FASD diagnoses are lifelong and affect not only the child, but also his or her family and the wider community.”

http://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/fetal-alcohol-spectrum-disorders-toolkit/Pages/Common-Definitions.aspx#sthash.KJhL2lRR.dpuf

Many families don’t know their child is within this spectrum of FASD, they can not figure out why they are have the learning or behavior difficulties they seem to display in school or at home. Nor do not know how to recognize the signs and many Doctors do not know how to diagnosis this Disorder; therefore, it goes undiagnosed which causes confusion in school as to the child’s abilities. It also inhibits services, and insurance or supplemental coverage for FASD. Because so many other disorders have co-morbid characteristics, children may be first diagnosed with Auditory Processing problems, attention problems, language disorders or Oppositional Defiance Disorder.

STATS:

Drinking Among Women Age 15 to 44 In the United States:

• 1 in 2 reports any alcohol use in the past month.
• Approximately 1 in 4 reports binge drinking (defined as 5 or more drinks on one occasion).
• About 1 in 20 reports heavy alcohol use (defined as binge drinking on at least 5 days in the last month).

Drinking Among Pregnant Women In the United States:

• 1 in 30 pregnant women reports high-risk drinking (defined as 7 or more drinks per week, or 5 or more drinks on any one occasion).
• 1 in 9 pregnant women binge drink in the first trimester.
• 1 in 30 pregnant women drink at levels shown to increase the risk of FASD.
• More than 1 in 5 pregnant women report alcohol use in the first trimester, 1 in 14 in the second trimester, and 1 in 20 in the third trimester.
• Those who are unmarried and over 30 tend to have the highest rates of alcohol use in pregnancy. However, in 2004, the rate of past month binge drinking among pregnant women age 15 to 17 (8.8%) was more than twice that of pregnant women age 26 to 44 (3.8%).
http://fasdcenter.samhsa.gov/documents/WYNK_Numbers.pdf

Prevalence: How Many Cases of FASD Are There?

Each year in the United States, an estimated 40,000 babies are born with an FASD, making these disorders more common than new diagnoses of autism spectrum disorder (Centers for Disease Control and Prevention, 2010), and a leading preventable cause of intellectual disabilities (Abel & Sokol, 1987). Recent in-school studies suggest that cases of FASD among live births in the U.S., previously reported as approximately 9 per 1,000 (Sampson et al., 1997) could, in reality, be closer to 50 per 1,000 (May, 2009). In addition, recent retrospective analyses of hospital admissions data indicate that under-reporting of alcohol misuse or harm by women may further disguise true prevalence rates (Morleo et al., 2011).
http://fasdcenter.samhsa.gov/aboutUs/aboutFASD.aspx

Financial Impact: What Does FASD Cost?

The cost factor of raising a child with an FASD is significant. Amendah and colleagues (2011) found that, for a child with identified FAS, incurred health costs were nine times higher than for children without an FASD. Lupton and colleagues (2004) have estimated the lifetime cost of caring for a person with FAS to be at least $2 million, and the overall annual cost of FASD to the U.S. healthcare system to be more than $6 billion.

COMMON CHARACTERISTICS:

The following neurodevelopmental characteristics are commonly associated with FASD. No one or two is necessarily diagnostically significant; many overlap characteristics of other diagnoses, e.g. ADD/ADHD, learning disabilities, and others.
Typical primary characteristics in children, adolescents, and adults include:

* Memory problems
* Difficulty storing and retrieving information
* Inconsistent performance (“on” and “off”) days
* Impulsivity, distractibility, disorganization
* Ability to repeat instructions, but inability to put them into action (“talk the talk but don’t walk the walk”)
* Difficulty with abstractions, such as math, money management, time concepts
* Cognitive processing deficits (may think more slowly)
* Slow auditory pace (may only understand every third word of normally paced conversation)
* Developmental lags (may act younger than chronological age)
* Inability to predict outcomes or understand consequences

Common Strengths:
Many people with FASD have strengths which mask their cognitive challenges.

* Highly verbal
* Bright in some areas
* Artistic, musical, mechanical
* Athletic
* Friendly, outgoing, affectionate
* Determined, persistent
* Willing
* Helpful
* Generous
* Good with younger children

Preventable Secondary Characteristics:

In the absence of identification, people with FASD often experience chronic frustration. Over time, patterns of defensive behaviors commonly develop. These characteristics are believed to be preventable with appropriate supports.

* Fatigue, tantrums
* Irritability, frustration, anger, aggression
* Fear, anxiety, avoidance, withdrawal
* Shut down, lying, running away
* Trouble at home, school, and community
* Legal trouble
* Drug / Alcohol abuse
* Mental health problems (depression, self injury, suicidal tendencies)

WHAT POTENTIAL PROBLEMS DO PEOPLE WITH AN FASD FACE?

People with an FASD are vulnerable to a range of difficulties, such as failure in school, substance abuse, mental illness, and involvement in the criminal justice system. A study conducted by the University of Washington shows the percentage of persons age 6 to 51 with an FASD who had difficulties in the following areas:

• 94% had mental health problems.
• 83% of adults experienced dependent living.
• 79% of adults had employment problems.
• 60% of those age 12 and older had trouble with the law.
• 50% experienced inpatient treatment for mental health or substance abuse problems or spent time in prison.
• 45% engaged in inappropriate sexual behavior.
• 43% had disrupted school experiences (e.g., dropped out).
• 24% of adolescents, 46% of adults, and 35% overall had alcohol and drug problems.

THIS DOESN’T HAVE TO HAPPEN…WAYS TO REMEDIATE/REHABILITATE:

* Spend time encouraging independence
* Create ways to help them feel successful
* Engage them in Music at young age (encouraging an out let for expression)
* Social programs that encourage talking about their concerns
* Brain remediation games that assist with:
– Speed Processing
– Language Processing (Expressive and Receptive)
– Auditory Processing (Reception, Association, Sequential Memory, Discrimination)
– Divided and Diverted Attention
– Working Memory
– Executive Function Skills ( Problem solving, Critical Thinking, Reasoning, Deduction)
– Cognitive Switching
– Left/Right Orientation
– Internal Organization
* A method of relaxation/ stress management

It is important we learn more about this disorder and share this knowledge. We do NOT need to place blame! The large majority of women would not ever do anything to hurt their child knowingly. They may not have known they were pregnant at the time they drank or they may have been very young, and did not know better, they may be Moms that have been taught to think it won’t matter to just have a couple of drinks.

We need to support our youth and help them understand the potential impression they have on their fetus and it’s success.

It does take a whole village to raise our children, please tolerate differences…and yet teach yourself so you can help the younger generation learn what MIGHT happen if they are not careful.

FASD is 100% preventable! Help us to educate the youth…BE AWARE if you are within child bearing age, PLEASE think before drinking!

If you believe your child may have the symptoms of FASD call your local Neurologist for a Diagnosis. If you need remediation activities to help your child, stay tuned in for future Blog entries on activities or contact me at http://www.cognitive-connections.com

Just another thought by Dr. Lise’