10 Things You Need to Know About FASD: #10 It's Preventable

Day 15

The one thing I hope you learned from our 10 Things About FASD campaign is that it is a life-long disability and the numbers of those affected are staggering.  Most do not know they were affected.
Many of those who are affected by FASD's  find help and diagnosis under one of the Alphabet Soup of co-occurring disorders.

The best thing we know about Fetal Alcohol Spectrum Disorder that it is 100% preventable.
No one need to suffer the long term affects and struggles caused by prenatal alcohol consumption.

Think about it, from statistics 50% of all pregnancies are unplanned. By the time the Mother finds out she is pregnant and STOPS DRINKING ALCOHOL is may already be too late.  But stopping any time along the line can help lessen the effects.

No amount of alcohol is recommended for a pregnant Mother.  It may be her right to drink, but STOP and think about the baby who may have their full potential lessened by drinking while pregnant.

You have probably seen the 049 in some of the graphics and here is the explanation.
SUPPORT - 049

0 = Zero
4 = Four
9 = Nine

for Nine Months - Support Friends and Family's Sobriety through their Pregnant Pause to encourage building better baby brains.

Spread the word and thank you for taking the time to learn about FASD.

Anny

10 Things to Know About FASD: #9 Wise Words From the Experts

Day 14

We asked those participating with the  90 Real People with Real Lives campaign we asked them their one wish.  This slide is not for me to write.  It is their voices, their wishes.

"Anna wishes to be seen for who she is and not for her disability."  from her Mom

"To help others like him in the same way many individuals helped him." from an adult with FASD

"For people to understand that because I look ‘normal’ my brain is not. I am not a ‘bad’ kid or a spoiled brat my brain just cannot process things like yours can. I want friends and can be very loyal. Take a chance and get to know me!"  from a child with FASD

"I just wish my Mom had cared more about me than drinking alcohol. She made it hard for me and it didn't need to happen."  an young adult with FAS

"Jonathan has many wishes!…no more babies born with FASD’s, healing for those who have it, unconditional friendships and acceptance by others." from Johnathan's Mom

"Angelo’s wish would be for no other mom’s to drink while they were pregnant so that other children would not have trouble thinking like he does.  He wishes that he could ‘think straight’."
from Angelo and his Mom

"I wish she knew how much she was loved".  from a parent of a child with FASD

"She just wants to be loved and accepted for who she is, and not feared for what she is capable of doing. To not be loud or lose control. To not get so mad she hurts the ones she loves but can’t remember why?"  from a Parent of an adult with an FASD

"For people to understand and not judge, for people to not assume that just because I look and can act neurotypical, that I am not neurotypical. (That can be really frustrating). And to be treated the same as everyone else." an adult with an FASD

"To never have anyone go though what I did with living with FASD." an adult with an FASD

"Tiana wants people to know that just because I have FAS and have some problems that I am no different from anyone else."  a wise young lady with FAS

 "My wish is that people living with FASD receive SERVICES AND PROGRAMS. Services that accommodate, and programs that coach them to manage their FASD, help them to move forward with their dreams and goals, to understand FASD even if its a little bit at a time. For the world to understand what FASD is like, LIVING ON A ROLLER COASTER THAT NEVER STOPS BUT WE CAN RIDE THE RIDE WITH JOY, LOVE, EXCITEMENT, AND STAY HEALTHY!" well said by an adult with an FASD

"Educate to Erase #FASD"  Thank you Rebecca an adult with an FASD

10 Things to Know About FASD: #8 Think Beyond Chronological Age

Day 13

With working with kids and adults with FASD's we need to look beyond chronological age. We need to meet them where they are function and adjust our expectations.

A child's chronological age is their age based on their date of birth. Their developmental age is the age at which they function emotionally, physically, cognitively and socially.  While a child with FASD may be 8 years old, they may be functioning very much younger.  Often times kids with FASD are functioning at half their chronological age.

 Think about it.                                        

                                             Developmental Age Equivalent

Actual Age                            18 years

Expressive language             20 years

Comprehension                      6 years

Money and time concepts      8 years

Emotional maturity                 6 years

Physical maturity                  18 years

Reading ability                      16 years

Social skills                             7 years

Living skills                           11 years

*Streissguth, A.P. & Kanter, J. (Eds.) (1997). The Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities. Seattle: University of Washington Press.

Understanding that there is often a difference between a child's chronological and developmental age will help caregivers and professionals have more realistic expectations for the child with an FASD.

Age Appropriate Expectations versus Developmental Age Appropriate Expectations

It can be easy to think of kids who don't meet typical milestones as being younger than they are or  if they are small and appear much younger.  But it can be confusing for all when a child physically and cognitively appears to be say 13, but emotionally acts like he is 6.  They child wants to be like everyone else, but struggles with peer relationships and emotions due to his developmental lag which makes it even harder on everyone.

For parents and caregivers we need to set up a child for success by meeting them at their developmental age with fun, learning and structure.  All the while taking into account the individual strengths and challenges of each individual child with FASD.

For adults with FASD because of the developmental lag a delay in the full responsibilities of adulthood may be a protective factor.  Imagine sending a 9 year old into the real world with little to no support when they are 18. For adults with FASD we need to meet them where they function and give them the circle of support tailored to their needs for life.

Anny

10 Things To Know About FASD: We Talk Too Much

Day 12

One of the biggest challenges about working with adults and children with FASD's is that often need help with interpreting what is being said and they need it presented in a way that they can understand.   

When talking with my daughter, she tells me the teachers talk like the teacher from Charlie Brown. Unlike Peppermint Patty, my daughter would sit there quietly trying to process what was being said.

She would watch what the others were doing to see what book to take out, what page to turn to or whatever they were doing for a cue to know what to do next. In first through third grades, she did great in a classroom where she was mainstreamed with kids with hearing challenges due to the interpreter and the all the visual instruction!  When they took away what worked she struggled.

Sometimes we speak too fast and part of the dialogue is lost in translation.  Think about missing key words in an instruction and to later learn after the fact that you did exactly opposite what was expected due to missing part of the instruction.   For my Mackie, he does not process Do not. He hears the instruction first and completely misses the do not.  So he does the vary thing you asked him not to do again and again.   So if we tell Mac  "Do not hit the cat."  He will hit the cat again and again again until we we change the command. We have learned that we need to tell him what to do instead. "Be nice to the cat!"

We talk too much with persons with FASD. We need to talk slower, simpler and know how the person with FASD needs us to communicate. We may need to give 30 to 45 seconds for processing and then allow more time for them to  access their response.   Others may need repetition or it written to process the understanding.

With my 6 with FASD's each have their own individual strengths and challenges. No two are alike. While one may be able to process normal spoken language, when disregulated or off balance,  he may need back up written messages.  Texting with my adults with FASD has been a very wonderful tool for me to use when communicating and they can go back to double check the instruction if they forget.

A couple of my kids are athletic.  But for one, she was fast!  She as an eighth grader ran times that would have qualified her for the state meet her brother attended.  She has a processing delay.  She was always late off the starting line.  She didn't hear the starting gun.  She didn't go until after the racers were off their mark.  She still moved on to win the race. But she was getting yelled at by the coach for her delayed starting.  I stepped in and talked with the coach and we got someone who gave her a hand signal (accommodating her the same they would a deaf runner).  She shaved seconds off her time.  She shined.  But high school happened, state rules interfered and she once again was frustrated by not knowing when to go and quit track. Today I would have known better how to fight for her right to accommodation. 

The saying "Hear it and they often forget. See it and they may remember it."  It is a must to remember with many with FASD's as they use visual memory much better than anything given auditory.

Advice from someone who had to learn the hard way.  I thought they understood. Sometimes he could tell  me verbatim what I said right after the fact.  Other times they would agree and would tell me they will do it or they could do it. But not.

 Just because a person with FASD can answer the question and know the answer does not automatically mean they understand what you said.  Double check for understanding and be ready to explain -- connect the dots for what they are missing.

In some with FASD's  due to executive function deficits, cause and effect challenges what they know and say cannot always be put into action.  It may even be understood in one way and may not even work in reality. And what one day they can do, may not happen tomorrow. What is known in one setting may not be translated into another.

Can I say this is complex stuff?  Think about how frustrating it is to have processing challenges in our complex world due to no fault of their own.

We would not expect a deaf person to go to an appointment with out an interpreter have a tool to hear. Persons with FASD need help with cognitive translation in ways for them to process and have full understanding of our complex fast moving world.

I have gone with my adult children to SSI, Medicaid, coaching job interviews from afar. I have helped connect the dots with the justice system and translate the legal jargon to my child. I am there as their interpreter, coach and friend to make sure that they expand their confidence and supported. 

It has been a l9 year learning curve and I am still learning.  My adult kids with FASD are more open now to helping me understand.  They have developed many tools and ways to help compensate and they are amazingly resilient. They each have incredible gifts and talents and we need to help support and accommodate the challenges.

Anny

10 Things About FASD #6: The Struggle with "Normal"

Day 11

Prenatal alcohol exposure can cause permanent life long challenges and each person is affected differently.  Those with FASD can have memory difficulties, processing, auditory, visual and sensory processing issues.

For those affected, no two are alike, but these common difficulties in some degrees affect the majority.

Prenatal alcohol exposure can affect any system of the body including they eyes and the processing of visual information and there are over 428 different diagnoses associated with FASD's.

People with FASDs have a hard time with memory and learning. More than not, a person with FASD is living a moment to moment existence .  My youngest daughter was found at the age of 16 through her a neuropsychological examination to have a profound memory disorder.  I knew that she would often live in the moment and she really does forget. My daughter is just like Dory from Finding Dory. She tells me that she has young people's Alzheimers, except she never could remember in the first place. But she is amazing with electronics.

The reason for these memory and learning problems is that alcohol exposure interferes with brain development. It can reduce the size of certain regions of the brain and can hamper communication between the different parts of the brain.  When that communication throughout the brain doesn't work smoothly, people tend to have problems with executive function.

Executive function is the mental processes that allow us to plan, focus, learn from experience, prioritize and in other words get things done and remember to get things done and why. Persons with FASD will have executive function deficits in some way or another.

Executive function deficits:
https://www.understood.org/en/learning-attention-issues/child-learning-disabilities/executive-functioning-issues

Auditory processing disorder:
Auditory processing disorder (APD), also known as central auditory processing disorder (CAPD), is an umbrella term for a variety of disorders that affect the way the brain processes auditory information.
http://www.asha.org/public/hearing/Understanding-Auditory-Processing-Disorders-in-Children/

Sensory processing disorder:
Sensory processing disorder (SPD; also known as sensory integration dysfunction) is a condition  when multisensory integration is not adequately processed in order to provide appropriate responses to the demands of the environment. 
http://www.sensory-processing-disorder.com

Receptive and Expressive Language disorders:
An Expressive language disorder is an impairment that makes it hard for someone to find the right words and form  clear sentences when speaking.  A Receptive language: It can make it difficult to understand what another person says. Some may have both.
https://www.understood.org/en/learning-attention-issues/child-learning-disabilities/communication-disorders/understanding-language-disorders

Persons with FASD due to no fault of their own, everyday will struggle with what comes easily to the rest of us.

When a person with FASD is stressed, they will struggle more with accessing, processing information and regulating their emotions and life can be even more complicated.

Patience and understanding will go a long way to make it easier for them.

Anny

10 Things to Know About FASD: #5 FASD Is Life Long!

Day 8

For those with FASD diagnosis is paramount. For those who grow up with having an FASD and have early diagnosis and intervention we give them a step up and hopefully more resilience and a better future.

Fetal Alcohol Spectrum Disorders is a permanent life-long condition and there is no cure.

Having FASD will not go away!  No not ever!

For those with FASD diagnosis is paramount. For those who grow up with having and FASD and have early diagnosis and intervention we give them a step up and hopefully more resilience and a better future.

Most of my adult children with FASD due to their normal IQ, have had to fail first before getting help.  The only hope for services is when their secondary mental health needs go into crisis.  In mental health they use the recovery model.

Recover from FASD?

I have seen that my adult kids do better once services are put in place.  Once the secondary mental health needs get stable, the systems pull back the vary services that led to the stability.  Thus creating a roller coaster of failures.

For the persons with FASD who fall into the developmental disabilities services it is far more understanding.

We need a CATEGORY under the disabilities Silos of support that persons with FASD can find appropriate services without having to find their services after they fail enough to develop secondary mental health and secondary disorders.

FASD does not need to be HOPELESS!

Anny

10 Things To Know About FASD: #4 Most People with FASD have Normal Intelligence

Day 7

Most people with FASD will have normal intelligence and their are those who have high intelligence and are gifted but they can still struggle. Prenatal alcohol exposure is a leading cause of prenatal neurological challenges.

According to one study, 86% of individuals with FASD have an IQ in the "normal" range and do not qualify for services for developmental disabilities.  They nevertheless have impaired mental functioning caused by brain damage that is permanent and irreversible.

According to Streissguth and other studies, the higher the IQ the more persons with FASD are misunderstood and have poorer outcomes.   Those with the hidden neurological challenges and appear normal are set up for expectations that they cannot meet.  Schools, society and employers cannot see their hidden challenges.

Think Developmental Age and Chronological Age.  This can be hard as they are often times functioning well below their Chronological Age.  But they do not want to be treated differently.

Understanding in Adults with FASD from Nofas

Often times their strong verbal skills can hide or mask the deficiencies and it can be confusing to those working with them.  My kids would have memorized the answers and may not be able to put into practice what they know.  Executive function, memory, social skills, cause and effect are all can be affected.  I have learned in my 20 years of working with those with FASD that they can be good actors. They have learned to mimic normal and when you double check for understanding often times they cannot explain.   People with FASD can be vulnerable to suggestion and wanting to be accepted can lead to victimization.  They can struggle with predicting outcomes and having a trusted people to coach and problem solve need to be part of transition and lifelong planning.

Secondary Disabilities in FASD.
Over 90 to 98%  of those with FASD will have or develop secondary mental health challenges.

According to research only 8 percent of those with an FASD will live independent successfully. The rest will need a spectrum of support geared to their own unique needs.

What happens when we do not support those with FASD in adulthood adequately?

Check out the statistics

Families know all too well.  On our Parenting FASD Teens and Adults caregivers and parents share our challenges and our grief at just how hard it is to find support and understanding for our Teens and Adults with FASD.   Most will struggle with jobs, qualifying for disability services and their "normal IQ" The adults with FASD especially in the transition years of 17 to 27 the lessons are often learned the hard way by all involved.

Persons with FASD need a circle of support.  As we advocate for those with Fetal Alcohol Spectrum Disorders we lifelong person centered supports tailored to each individuals strengths, challenges and choices so they can live successfully in our communities.

Anny