Love...

If you're teaching someone who is living with Fetal Alcohol...remember to love the student you got, not the one you wish you had. -Jeff Noble

Build on SUCCESS

Children with FASD do better when you BUILD ON SUCCESS rather than constantly trying to redirect them or institute consequences.

Sprinters

"Many individuals with FASD can perform short-term projects well, but have much more difficulty with sustained effort over longer periods of time..That's because their brain has to work twice as hard, so think of them more as sprinters, not long distance runners." -Jeff Noble

Don't be a lit match going into a Fireworks factory!

If we change the way we react to someone living with Fetal Alcohol and their behaviors, they will change the way they react to ours. You can't be a lit match going into a fireworks factory. -Jeff Noble

Audi Processing deficits

"Because many people with Fetal Alcohol have audio processing deficits, they only hear every third or forth word. That's why everyday ends up being a real game of broken telephone, which is extremely frustrating for both caregiver and kid." Jeff Noble

Sensory Issues

Great explanation for sensory issues: All sensory input come to the brain via the nerves to the spinal cord and into the brain. At the base of the brain there is a section that is suppose to split up the input (visual, auditory, taste, tactile) and send it to the proper part of the brain to be interpreted and dealt with. In individuals with central nervous system damage (such as those with FASD) the brain sends the signal to the wrong area, which is why you may hear someone say a sound makes her teeth hurt, or some children say the light is "too loud." The brain misinterprets these signals often as pain since they are sent to the wrong area. It's literally painful for them.

It's SO Individual!

As a Caregiver, it's important not to compare yourself to other parents, even other FASD parents. Your child will hit milestones in their development - it's just going to look different and take a little longer. -Jeff Noble

The Daily Question...

"AM I SETTING my son UP FOR SUCCESS OR FAILURE?"

"The best outcomes for people with Fetal Alcohol comes from making sure they can. Ask yourself "Am I setting them up for success or failure?"` Jeff Noble

:) You are a Good Parent :)

"Behind every great person living with Fetal Alcohol, there is an even greater caregiver. It's never by accident that people living with Fetal Alcohol do well(even for 5 mins). It's because you do most of the work and give them all of the credit." Jeff Noble


 

Remember...it's a BRAIN INJURY

"If we are not bringing organic brain injury into the mix when planning for someone with Fetal Alcohol, we get further away from appropriate supports and thus further away from SUCCESS." Jeff Noble

Accomadate

"We provide ramps and elevators for people living with a physical disability. We also need to provide 'ramps' for those living with an invisible physical disability like Fetal Alcohol - by not doing so we are robbing human beings of a quality of life they deserve." -Jeff Noble

Notes and Quotes from "The Connected Child" by Karyn B. Purvis, PhD., David R. Cross, PhD., and Wendy Lyons Sunshine

When disciplining a special needs child, the fewer words the better.

Teaching Respect:

"Hold it.  It is not ok for you to talk to me that way.  Tell me what you need. And tell me with respect."  

"Let me see those eyes...I love to see those eyes...you can say anything you need to say to me.  If you think that I'm being mean, you can say that.  If you feel angry, you can say that.  Just say it with respect.  Now tell me what you need."

Important lesson:  your child can always say what he feels and he can always ask for needs and wants, but it all must be said appropriately.  

The child may use behavior to communicate what he/she can't express verbally.

When you say "no"

*before he melts down, say, "wow that's a great job of accepting no" 

 *sandwich the "no" with positive comments

*praise immediately

If the child asks without respect, the answer will always be no.

general rules to live by:

*respond quickly

*don't get into a discussion

* use fewer words

*be instructive and corrective

IDEAL:

I= Immediate response (to mis-behavior)

D=Directly with child (eye contact)

E=Efficient (least words)

A=Action based--actively directed re-do

L=Level your responses at the behavior, not the child

Rules of Connected families

A child may not dominate the family through tantrums, aggression, back talk, whining, or any other tactic.

Parents are kind, fair and consistent, they stay calm and in control.  They admiinster structure and limits, but they also provide a great deal of nurturing, praise and affection.

A child is encouraged to use words to express his or her needs directly and respectfully.

Parents honor a child's boundaries and respectfully listen to his or her needs and requests.  They never shame or ridicule a child's perspective.

Parents meet all reasonable needs and requests.  They say "Yes" whenever they can.  Occasiionaly they allow a compromise and at times they say "No" and deny requests.

What we're dealing with...

the trust and caring needs of an infant
the independence needs of a two-year old

the shame issues of a three-year old

the concrete thinking of a four-year old

the reasoning skills of a five-year old

the street smarts of a sixteen-year-old

all wrapped up in the body of an eight year old

Parents respond to misbehavior immediately.  They redirect the child to better choices, let him or her practice getting it right and then praise their child for improvement.  Once the conflict is resolved, they return to playful and warm interactions with their child.

checklist (want to answer yest to all:)

is my approach playful and interactive?

do i show that i genuinely value my child?

do i alert my child to what's coming next?
do i enforce consequences consistently?

do i mean what i say? do i follow through on my words?

am i responding to misbehavior within three seconds?

am i guiding my child through re-do's

do i let my child make choices and problem-solve?

do i make regular eye contac when i speak?
do i give my child my undivied attention?
do i give whole-hand, affectionate touches?
do i make affirming, warm, positive comments?

do i behave consistently?

do i facilitate joint problem solving with my child?
do i help my child self regulate and develop self awareness?
do i encourage my child to tell me his or her feelings?

do i ask my child what he or she needs?

do i create a schedule that accomodates my child's fundamental needs?

do i simplify my life enough that I can give my child my attention?

"think it over" place...you sit near the child...they tell you when they're ready

Intercept with words (stop) and child stop his own behavior...success!

Defiance:

"It's not OK to talk to me like that. You can alwyas have your feelings, but you must always talk to me with respect.  Try that again"

Play:  let yourself be directed in play by your child...set timer for 15 minutes and give him your full attention.

Medication: can provide about 30% of the desired solution.  Taking drugs for behavioral problems is similar to taking antidepressants when somebody you love dies.  The medication acts as a short-term crutch, to help you get you through the really bad period.   Drugs are a means of giving temporary support until the person can live without them.

Television, movies, electronic games: you need to increase the time your child spends with people and decrease the time he spends alone with machines, etc.  An hour a day of TV, etc. is ok...but these things cater to short attention spans and you want your child to engage in activities that extend attention spans.

NOTEBOOK PLANNER: A LIFE SKILL

OK here is my latest and greatest idea for giving my son a consistent schedule:

*A simple, basic, spiral notebook.

*I write his schedule in the notebook...a few days to 1 week at a time.
*He can look at the schedule each day/week to see what is going on for the day, and prepare himself for it.

This is the best I can think of, thus far, to give consistency to my son's schedule.  The problem and reality is that I can't just put up one schedule that will be the same day by day...our schedule changes a little each week, day, and/or month.  That's why I've always been frustrated with putting up a daily schedule for my son...it seems I do it for a few weeks and then stop, with frustration, because the reality of life is that EVERY DAY IS NOT THE SAME!

So, I think the consistency comes in giving my son a sort of "planner".
That's how I schedule my life...so why not begin teaching him that life skill?

It starts with my writing the schedule in for him each day...but can lead into him writing and keeping a "planner" for himself.

I LOVE this new idea...if it actually lasts and works, then I will REALLY LOVE IT!

Please be Patient with us...

Brain injury world is a hard place to live in.
Please be patient with us.

Success! in a Social Setting :)

My 10 year old son, Sam, who is diagnosed with an F.A.S.D. had success in a social setting.  One of his biggest challenges is participating in social settings, because his extreme anxiety prevents him from participating.
Every year we have our "Annual Cub Scout Swim Party" where we set up a water slide going down a big hill.  For the past two years when we have come to this party, Sam has sat on the side and just watched all of his peers enjoy the water slide.  His anxiety prevented him from participating.
Well, this last August when Sam attended our "Annual Cub Scout Swim Party", we put supports in place.  First of all, we let Sam swim in his clothes! (much less invasive then a swimsuit that he's not used to wearing).  Also, we brought Sam to the activity before anyone else arrived and let him see the water slide and let him go down the water slide all by himself without anyone watching. These supports made the difference! When others arrived and the party began, Sam actually participated!  He went down the water slide multiple times with his peers, laughing and having fun with them.  In fact, he participated the entire evening, with a smile on his face. We were so happy to see our son having FUN with his peers! :)

Simple thoughts to help one UNDERSTAND FASD

Insights from Jeff Noble: Fetal Alcohol Syndrome Forever w/ Jeff Noble
FASD IS FOREVER, FRUSTRATION IS NOT

Just because someone living with Fetal Alcohol can say "it" doesn't mean they understand "it". Often times their expressive language is greater than their comprehension, making them appear more capable than they really are.

People who think you are coddling someone with Fetal Alcohol are wrong. You're not coddling, your accommodating their disability, and to do that necessitates a different parenting style.

People with Fetal Alcohol have a desire to do well and to please..but because they have organic brain damage it can limit their capacity to follow through with those desires, making it frustrating for both parties.

If we change the way we react to someone living with Fetal Alcohol and their behaviors, they will change the way they react to ours. You can't be a lit match going into a fireworks factory.  

Challenging behaviors from people with Fetal Alcohol are symptoms of a poor fit. A poor fit between who the person with Fetal Alcohol really is, and what is expected of them.  

Many individuals with FASD can perform short-term projects well, but have much more difficulty with sustained effort over longer periods of time..That's because their brain has to work twice as hard, so think of them more as sprinters, not long distance runners.  

For someone living with Fetal Alcohol, medication should never be response for a poor environment. Don't keep trying to change the drugs, keep trying to change the environment. Medication should be the last intervention, not the first. Would you give someone medication just because they were blind?

People with Fetal Alcohol can see things in others (that is concrete) but they cannot see it in themselves (that is abstract). That's why they are good at pointing out your flaws, yet unable to see their own. Another reason why it's Brain not Behavior 

When we get upset at someone with Fetal Alcohol, (because we do) focus your anger on the brain damage, not the person affected by it.

Did you know? suspending someone with Fetal Alcohol from school is like suspending a blind person and telling them "When you come back from your suspension, you better not be blind"....Don't hate accommodate.

One of the toughest challenges caring for someone living with Fetal Alcohol is that you are fighting traditional thinking all the time! FASD is anything but traditional!

Celebrating small successes with Fetal Alcohol will lead to even greater victories, because where there is competence, compliance will soon follow.

If your loved one with Fetal Alcohol is having a tough time at school, decrease the amount of work. It is better for our guys to complete 100% of less work, rather than 0% of more work. I wish everyone a successful school week.

Although it may not look like it sometimes, your loved one living with Fetal Alcohol loves and needs you. More often than not they are just as frustrated with themselves as others are with them

One of the most frustrating things for a caregiver is to offer help to someone living with Fetal Alcohol to no avail. The reason is because of their deficits in executive function, individuals with FASD are the least likely of any group to consider themselves disabled and the least likely to see that they need help.

When working or living with someone who has Fetal Alcohol there is always the Honeymoon period - at first we provide tons of support - then we get comfortable and we increase expectations and decrease supports. Person living with FASD hasn't changed - we have.

An often overlooked characteristic of Fetal Alcohol is poor judgement. So, when you're shaking your head after they have done something silly, remember, it was their disability that made the call, not their character.

 If we're telling people with Fetal Alcohol that they “must” learn or “must” take responsibility, then we “MUST" accommodate their disability in order for them to do so.

One of the toughest emotional hurdles as a Fetal Alcohol caregiver is, giving up what we thought life was going to be like, in order to take on what it really is.

Some insight on what it means to think "CONCRETE"

"People with Fetal Alcohol can see things in others (that is concrete) but they cannot see it in themselves (that is abstract). That's why they are good at pointing out your flaws, yet unable to see their own. Another reason why it's Brain not Behavior." -Jeff Noble

"Our kids/adults with FASD often can remember things they see much better than hearing and other mediums. Seeing is concrete. But I believe that they use visual memory to record the events or what they see and they can access that more easily with the neurological damage. (For my daughter they confirmed that her memory was impaired and only facial memory was intact). For her seeing is her greatest way of accessing her skill set and memory. For my youngest son, he could remember in vivid detail events and have no memory of anything he did. My children's neuropsych reports confirmed my suspicions over the years.

Thinking further on this.... Often our kids/adults can remember what everyone else did, wore, etc. but cannot always remember what everyone said accurately. They are using visual memory, and we know that auditory processing is impaired.

So they may remember the details, but miss some of the auditory details.
But even bigger, if they are relying on visual memory of the events... where are they in their recordings/memories? They are not there.

Think about it they are the camera operator and they cannot see themselves to remember what they did, how they reacted and they often can argue that they did not do something or will not accept any responsbility of their actions. But how can they with their brain injuries if they are not there. It can lead to blaming everyone else but themselves, faulty memories of the events as much of the story is all left out because of they cannot see the whole picture.

I tested my theory early on and used a camcorder to record the events in a room. My children were stunned by their behaviors and they held themselves accountable when they could visualize what happened. We used a wall of mirrors in our family room and they could sometimes see themselves interacting and thus remembered more of the family time. We could work on behaviors because we could replay them and see what they needed to work on.

Holding one's self accountable without seeing oneself, is an abstract concept, which requires planning skills, cause and effect and higher order thinking. Which we all know our kids/adults struggle with. It can also lead to our kids being suggestable about that they did something that they didn't. In the criminal justice system they say that often people with FASD take responsibility for things they did not do. Some to to suggestability, but I believe that they cannot remember their interactions or their memory deficits leave them vulnerable.

I have since then understood that I need my kids to see what they need to do, I need to talk less. I also use my phone camera not as a punishment but to help create some awareness of how they interact with people. To see themselves.

I also video family events with her in them as she cannot remember being someplace sometimes and she can enjoy some of the same memories we have as a family.

I use post it notes for a chore instead of talking, I use a text message to my daughter 21. When she sees it, she can process it in less than a couple of minutes and finish the one task chore in less than 5, but with prompts and reprompting it would take 15 to 20 for the same task. I am not badgering, getting frustrated etc. and she can have success."

copywrite 2013 Ann Yurcek

"I Will Never" by Vicki Brewster: this Poem says it all

I Will Never
I will never have the children I dreamed of adopting-
But I do have the children
God planned for me to adopt.
So I will adopt new dreams
for my family and children.

I will never be able to be the mom I want to be.
But I am "their" mom
So I will be the mom they need.
I will never have a "normal" day - one without meds,
doctor appointments, therapy, IEP meetings.
But I do have normal moments.
So I will learn to savor the moments
and take each day as it comes
I will never be able to assume my children can
follow the simple rules, act appropriately,
understand the consequences of their actions,
or be safe.
But I can surround them with a support system
who will think for them,
remind them of the rules and consequences,
and keep them safe.
So I will be their external brain.
I will never know what my children could have been.
But I can celebrate the wonder of who they are
and what they can become.
So I will give them all the love, support,
encouragement, and the tools they will need
to become productive adults.
I will never be able to change the fact that
the birth mother drank during her pregnancy.
But I can forgive.
So I will not condemn, pass judgment or hate her.
I will never forget the damage that alcohol has done
to my children's brains.
But I can make a difference for another child.
So I will share my knowledge and experiences
as often as I can.
I will never see another child screaming in a store
and just assume he's misbehaving due to poor parenting.
But I can sympathize
with the stress and frustrations of meltdowns.
So I will smile
and offer words of encouragement and support to the mother.
I will never hear another horrible news story
about a child in trouble with the law
and not wonder - was he FASD?
But I can pray for them and their families.
So I will pray for the ones in the news
and the ones we don't read about.
I will never know a bigger joy
than watching my children master a new goal,
remember a rule, or sleep thru the night.
But I can lower my expectations of them and myself.
So I will celebrate with them
every mountain climbed and hurdle crossed.
I will never have a day that is not wholly consumed
with the results of a woman who drank during pregnancy.
But I can raise the community's awareness,
education and support
of this totally preventable birth defect.
So I will.
So I will.
by Vicki Brewster, May 21, 2004

VIDEO CLIPS

 Video clips about FASD...

http://www.youtube.com/watch?v=hvNEV2MGXwc

http://www.youtube.com/watch?v=XM0Y1A5mxCI

Support and Understanding

I went to my first FASD support group...it was so helpful to be there, among other parents who truly understand what we're dealing with.
One of many things that brought me comfort was this understanding:
FASD is not a character flaw, it is not a reflection on me as a parent.  It is physiological...a physical brain damage.
The shift in the role of treatment is from fixing the person to understanding them differently, providing accommodations and paradoxically achieving improvements and by extension to contribute to advancing thinking and supporting change in all systems. -Diane Malbin

Trusting in God

God's vision is so much greater than mine.  He sees all; His vision of my son and what my son needs is perfect.  I feel the more I trust in God, the better things will be for my son.  God will light the way for us...it may not be the way we thought or the way we planned, but He will light the way.  He will not leave us in darkness. I have faith in that.

Light the Way

O Lord wilt thou suffer us to bear our afflictions in darkness?
Nay, I have faith that thou wilt light the way to happiness.

I trust in thee with all my heart,

I put faith in thee and do my part.

But my understanding is weak, limited, incomplete,

Thine understanding is perfect, all-knowing, without defeat.

I will lean not to my weak understanding

Rather I seek thy will, unyielding.

Because of thine gift of agency

I can give thee my will freely.

This I do with all the faith that I can find

And turn to thee with a willing heart and mind.

Though I am blinded by the views of the world and men,

I walk by total faith, trusting in thee again and again.

I believe in thee, that thou wilt light the way,

Choosing higher ground for me day by day.

If thou wilt light the way, I know I can move forward each day.

Touch my heart, touch my life, O Lord, I have faith in thy ways.

(see Ether 2 and Proverbs 3:5)

By Mindy Taylor

May 2013

PUTTING PUZZLE PIECES TOGETHER

GOD LOVES MY SON AND KNOWS MY SON, PERFECTLY. HE KNOWS HIS WEAKNESSES, STRENGTHS, AND DISABILITIES...NONE OF IT IS CONFUSING OR FRUSTRATING TO HIM.  WE ARE THE BLESSED ONES THAT GET TO HELP PUT THE PIECES OF THE PUZZLE TOGETHER TO SEE THE TRUE MASTERPIECE GOD CREATED...OUR SON!  FOR HE IS GOD'S SON...HE IS A CHILD OF GOD.
"Ye are the children of the Lord your God," Deuteronomy 14:1

So often that's exactly what it feels like I'm doing...putting puzzle pieces together.  How wonderful it is when we find the right fit to a piece of the puzzle!  We do this, with much endurance, diligence, study, and with the help of God.

Gaining a New Perspective: Accommodations for those with FASD

 http://www.fascets.org/conceptualfoundation.html
FASCETS Conceptual Foundation: A Neurobehavioral Construct for Interventions For Children and Adults with Fetal Alcohol Spectrum Disorders (FASD)
 Fetal Alcohol Syndrome (FAS) has been referred to as the leading cause of mental retardation and developmental disabilities in the Western world for over fifteen years, a significant statement since underidentification of this population is still common. National and state studies have found that the numbers of women who drink during pregnancy continue to be high (CDC, 1997, Governor’s Task Force, MN, 1998, Oregon Benchmarks, 1998; the National Survey on Drug Use and Health found that although overall rates of use appear to be dropping, girls start using alcohol/drugs at higher rates than boys, 2006.)
The medical diagnostic criteria for FAS were established in 1973. Since then, thousands of research studies have explored the mechanisms of damage to fetuses caused by alcohol and other drugs. Increasingly sophisticated studies have clarified the nature and duration of these effects. It appears that of the drugs studied to date, e.g., cocaine and methamphetamine, prenatal exposure to alcohol causes the greatest damage to the developing brain and central nervous system.
People with Fetal Alcohol Syndrome, and particularly those with Fetal Alcohol Spectrum Disorders (FASD), are referred to as having an “invisible physical handicapping condition,” since there are few external physical characteristics of prenatal alcohol exposure. In these cases, the only symptoms of the underlying neurological disability are behaviors.
Although underdiagnosis of FASD is common, people with FASD are often assigned multiple DSM IV diagnoses, including Attention Deficit Disorder, Hyperactivity, Asperger’s Disorder, Learning Disorder, Reactive Attachment Disorder, Conduct Disorder, Emotionally Disturbed, Oppositional Defiant Disorder, and others.
Diagnoses on Axis I in the DSM IV organize constellations of presenting behaviors. Many capture primary neurobehavioral and secondary defensive behavioral symptoms of FASD. However, interventions generated on the basis of Axis I diagnoses address behavioral symptoms. The etiology of behaviors -- effects of brain dysfunction on behaviors -- is typically not recognized or incorporated into techniques. For example, recent research has found some medicinal and behavioral interventions for Attention Deficit Disorder (ADD) to be ineffective when applied to those with FASD/ ADD, since underlying neurocognitive characteristics of FASD and ADD appear to be significantly different (Coles, 1997).
Linking research findings with behaviors: A gap exists between the research on FASD, brain research, and behavioral literature. Historically, the idea of brain dysfunction, or the “organicity” concept, failed to gain general acceptance. This has been attributed in part to the complexity, subtlety and variability of effects and the overlap between neuro- and psycho-pathology. There is a vast body of medical literature on the physical characteristics of brain dysfunction, and an equally huge body of literature on behaviors. These two spheres have yet to merge.
Bridging this gap and linking the idea of brain dysfunction with behaviors creates an alternative explanatory theoretical framework that shifts thinking from learning theory into a neurobehavioral paradigm for understanding the meaning of behaviors. This paradigm redefines the meaning of behaviors and supports development of a more holistic and integrated method for systematically considering all facets of the person – physical, developmental, and cognitive. Linking brain dysfunction with behaviors is consistent with research on FASD. The resulting neurobehavioral construct is informed by research on FASD and is the basis for the FASCETS model. This model was developed on the basis of clinical work and research findings. It provides an organized approach for rethinking the meaning of behaviors, and generating specific, relevant techniques. This structure manages the complexity and diversity of neurobehavioral characteristics.
The challenge in creating this model has been to accurately translate research findings into practical information and training material that is intellectually accessible for a wide range of educational levels, and that has relevance for all disciplines.
The logic of interventions based on this model reads as follows: If children, adolescents and adults with FASD have by definition a physical disability – brain damage from prenatal exposure to alcohol/drugs -- and if the primary presenting symptoms of this disability are learning and other behavioral characteristics, then it follows that they would benefit from appropriate environmental accommodations. This is the same principle that is applied for people with more obvious physical handicapping conditions.
Presenting behavioral characteristics of people with observable physical challenges, e.g., paralysis, are different from behavioral characteristics associated with people with brain dysfunction, e.g., behavioral symptoms of sensory overload, memory problems, or dysmaturity. The obviousness of this statement is intentional: Behaviors that reflect underlying neuropathology are rarely framed in a neurological perspective and are instead viewed through a moral lens and seen as a function of volition, or psychopathology.
Although presenting behaviors indicating the presence of other physical disabilities are different, the principles for interventions for both kinds of physically-based conditions are the same. As self-evident as this seems, the application of this principle represents a nearly paradoxical way of thinking, understanding, and defining points of intervention.
People with physical challenges are provided with environmental accommodations, the range of which reflects the variability of disabling conditions. The more obvious the disability, the clearer the nature of the accommodations, e.g., where there is paralysis, wheelchairs and ramps are provided. When presenting symptoms of a disability are behavioral, identification of accommodations is more elusive, e.g., modifying timelines, providing alternative instructional strategies, or recognizing developmental rather than chronological age. However, just as outcomes are improved for others with recognized disabilities whose needs have been addressed, preliminary clinical findings of improved outcomes for children, families and professionals based on this approach suggest the efficacy of this model for those with FASD.
A question of fit: FASD as a social problem is emerging in a world still dominated by learning theory and a behavioral paradigm. This paradigm, with associated assumptions about brain function and behaviors, forms the basis for understanding and intervening in behavioral symptoms. These assumptions remain unexplored for their relevance for people with neurobehavioral disorders. FASD challenges the theory to expand to include the neurobehavioral dimension, since interventions based on the principles of learning theory are often incompatible with the needs and abilities of people with FASD.
The poor fit between behavioral techniques and FASD may be indicated by findings from the Secondary Disabilities study published by Dr. Streissguth (1996). For example, this study found mental health problems to be the most common secondary disability associated with FASD. Secondary disabilities are defined as defensive behavioral characteristics and are not intrinsic to FASD. These are challenging behaviors that develop over time as a function of a chronic poor fit between the person and his or her environment.
The most important finding of Dr. Streissguth’s study may be implicit. Following diagnosis for FAS and FAE, subjects continued to receive standard interventions, e.g., mental health and school services, and traditional parenting techniques. Most of these are cognitive-behavioral interventions based on learning theory and are variations on a theme of one: Identify problem behaviors and target these for change.
The research findings of high frequencies of secondary problems occurred in spite of these interventions. Rather than suggest the inevitability of deterioration and associated secondary challenging behavioral characteristics, these findings appear to indicate the ineffectiveness of otherwise good traditional, learning-theory based techniques.
Interventions that focus on changing presenting behaviors that are symptoms of a disability seem to yield frustration and behavioral deterioration. The net effect is like inadvertently “beating the blind child who refuses to read the blackboard.” Paradoxically, when behaviors are understood differently as cues, or symptoms, of an underlying disability and environments are adapted to provide a good fit with the needs and strengths of the individual, many challenging behaviors resolve. Including the key variable of brain dysfunction and understanding behaviors from a neurobehavioral perspective provides a way to shift from seeing the child as being the problem, to understanding the child as having a problem, a physical disability.
The apparent limits of the learning theory paradigm may contribute to the paucity of interventive research on FASD. There has long been speculation that few interventive studies on FASD exist. This was confirmed by researchers in Canada who searched the literature on FASD and published a State of the Evidence Review (Premji, 2004). Of 16,913 references, only seven interventive studies were located. One was the three-year FASD interventive study conducted by FASCETS and funded by the State of Oregon that tested this neurobehavioral approach for working with children and adolescents with FASD. The project was an educational, community-based, multisystem collaboration. The goal was to increase understanding of behaviors from a neurobehavioral perspective, and generate congruent accommodations across domains that create a good fit for children with FASD in all environments. The hypothesis was that behavioral improvements would be a function of adults understanding children differently and providing accommodations in all settings. Statistically significant findings of reduced secondary behavioral characteristics in children and improvements in parents and professionals suggest the potential viability of this construct (Malbin 2002).
Innovativeness: The definition of a problem determines the intervention, or, beliefs dictate interventions (Holloway, in lecture, 1989). If a behavior is viewed as a function of willfulness, or choice, interventions typically focus on changing the behavior. If a behavior is recognized as having a neurological basis, then the target for intervention includes the environment. Recognizing brain dysfunction as the etiology for behaviors redefines perceptions, which then redefines the nature of the problem and clearly redefines the nature of interventions.
The shift in focus is from the child to the child-in-the-environment, from trying harder using increasingly controlling and coercive measures, to trying differently and paradoxically achieving reductions in secondary behaviors through environmental accommodations. This is like writing the IEP for the environment.
The simple idea of reframing perceptions to see behaviors as symptoms, rather than as the thing to be changed, is new. The simplicity of the statement belies the intellectual shift this entails. Preliminary findings from the three-year study mentioned above that explored the soundness of this hypothesis clearly suggest that as caregivers and professionals understand behaviors differently, their perceptions change, options expand, and secondary symptoms in children are reduced.
The innovativeness of this model is found in its redefinition of problems and solutions in a manner consistent with research findings. The study based on this model tested an approach rather than a technique. Statistically significant findings of improvements suggest the importance of further research on this approach.
Implementation: Accommodations in all environments are provided for people with other physical disorders. Accordingly, accommodations in all systems of care are also necessary for people with FASD. An educated community-based multidisciplinary continuum of care facilitates sustained implementation of accommodations.
The process of implementation is enhanced by recognizing personal, historical, cultural, intellectual, institutional, and fiscal issues and associated with this issue. The complexity of these dynamics suggests the importance of a comprehensive and thoughtful approach, a reasonable timeline, and adequate support for achieving sustained multisystems implementation. Support for implementation required by this approach is decremental, meaning there is less need for external supports over time. This is an empowerment model in the best sense of the term, proactive rather than reactive. It supports youth and adults with FASD, parents, professionals and their systems.
Conclusion: The goals of this approach are to increase understanding of FASD as a primary brain-based physical disability with behavioral symptoms, to increase effectiveness and efficiency of practice and program design, and to contribute to the long range goals of community healing and prevention of FASD.
  http://www.fascets.org/conceptualfoundation.html

Understanding FASD

http://www.fascets.org/info.html

UNDERSTANDING FASD:

FASD is often termed an "invisible physical handicapping condition."  The effects of prenatal alcohol and other drug exposure on the developing brain are the most debilitating aspects of this condition. These effects are invisible. The only indicators of this physical disability are found in learning and other behavioral characteristics.

Parents and professionals often find standard techniques are ineffective. Many people experience increasing frustration over time when childrens' behaviors are unresponsive to traditional interventions. Until recently, there has been little information linking the "organicity," or neurological differences associated with FASD, with behaviors.

Information linking brain function with behaviors increases understanding, reduces frustration, and contributes to successful outcomes. Knowledge about FASD and organicity provides a way to shift perceptions: Children may be understood as having a problem rather than being the problem.     As a result, rethinking and reframing interpretations of behaviors contributes to developing effective and appropriate strategies, "trying differently rather than trying harder." Successful strategies support children, and contribute to the well-being of parents and professionals.

FASCETS supports the development of a family-centered, community-based, multidisciplinary continuum of care. This collaborative design has been found to be effective in enhancing communication among parents and professionals for their mutual benefit.

PRIMARY CHARACTERISTICS OF FASD;
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 

POSSIBLE 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)

http://www.fascets.org/info.html

Intervention: Tackling the Room!

Today I forced myself to "tackle" my son's room.  Yes, it most definitely needed some attention. I felt there was just too much stuff in his room.  I kept putting off doing it 'cause I didn't know where I was going to put all the stuff, but I decided to leave that excuse in the hallway...literally...Now, all the stuff is in the hallway, waiting for a new home.
I've cleaned out and organized my son's room before, but this time was different.  This time I literally took everything out of his room and I ONLY PUT BACK WHAT I FELT WAS NECESSARY.

HERE'S WHAT STAYED:


HIS TIRE SWING STAYED.  A couple years ago we had an Occupational Therapist recommend we put a swing in his room, and so we did.  It has been a very good thing for my son and will definitely stay in his room.

THE MONKEY BARS are permanent and of course, stayed.  The Occupational Therapist also recommended we put monkey bars in his room, and gratefully, I have a very handy husband who had the monkey bars built and up and going in just a couple days.  The monkey bars have also been a very good thing.

STUFFED ANIMALS IN HIS CLOSET:  I completely emptied his closet and then decided to put only stuffed animals in his closet.  He has a lot of stuffed animals and they are all very important to him.  They fit perfectly on the shelves in his closet.  He doesn't have closet doors so it feels more like they are just on shelves in his room. 

HIS BED:  Because of the space the monkey bars and swing take up in his room, his bed is simply a mattress on the floor. The mattress fit nicely in front of the closet and that way his animals are all by him while he sleeps, just like he likes it.

ONE BOOKCASE (3 shelves):  I kept one bookcase in his room.  Top shelf:  a few legos, water bottles, lotion and hand sanitizers (Again, things that are important to him).  Middle shelf:  special things:  picture, special clay animals he made, puzzle star, etc.  Bottom shelf:  books.

BIG PILLOW/BEAN BAG:  I put a big pillow and bean bag by his book shelf so he can sit there and read if he wants.

HOOKS ON THE BACK OF HIS DOOR:  On the back of his door there are hooks.  On the top hooks I put his backpack, special bag, and water bottle carrier.  On the bottom hooks, I put his cub scout shirt and his jacket.

PLASTIC DRAWERS FOR CLOTHES: I put all his clothes in small plastic drawers.  Each drawer is labeled with "pants", "shirts", "socks", etc.  Everything has a place.  I lined his shoes up next to the plastic drawers.

AND THAT'S IT...THAT'S ALL THAT'S IN HIS ROOM.

THE RESULT:  Seeing how I did this without consulting with my son, I was a little nervous about his reaction, especially since all his toys, stuff, etc. were just in the hallway.  BUT he didn't even care about the toys he passed in the hallway.  HE LOVED HIS ROOM THE WAY I HAD ORGANIZED IT!  His face lit up when he walked in and he sat on his swing and whispered to himself:  "This is way better.  This is way better."  And it's not like his room was messy before...we kept it clean most of the time...but I just think it was TOO MUCH STUFF.  I think he will like it much better this way.  We will give it the "2 week try" and assess! Now I just have to find a place for his legos, blocks, toys etc...cause those are good for him too...but just not good in his room.


INTERVENTION:  THE POINT OF THIS INTERVENTION IS TO ASSESS THE ENVIRONMENT, PRIMARILY HIS ROOM, TO SEE IF IT IS TOO MUCH OR TOO OVERSTIMULATING....AND THEN CHANGE IT TO NOT BE OVERSTIMULATING.

Updated Afternoon Schedule

It has been 2 weeks since I began the intervention with the "Consistent Schedule of a Routine", posted on May 1st, 2013.  I have found that the morning and evening schedule has been helpful and made a difference the majority of the time.  I feel the afternoon schedule needs to be updated.  I sat down with my son and made a more specific afternoon schedule, and it is posted here:

Monday.:
1. Shower
2. Job:  Clean upstairs family room.
3. Wii
4. Read books

Tuesday:
1. Shower
2. Job:  Clean upstairs family room.
3. T.V.
4. Piano

Wednesday:
1. No Shower

2. Webelo Scouts
3. Clean and Vacuum upstairs family room
4. Free time choice

Thursday:
1. Shower
2. Job:  Clean upstairs family room.
3  Computer
4. Legos

Friday:
1. Shower
2. Job:  Clean upstairs family room.
3. Bike
4. Movie

Don't try harder, try differently!

As a general rule, when working with persons with an FASD, if a situation is not working, STOP, OBSERVE, and ASK CONCRETE QUESTIONS (not abstract questions).  "Why?" is a very abstract question and will not bring good results with a person with an FASD.  Good, concrete questions to ask are as follows:  "What was hard for you?"  "What would help?"  "What were you frustrated about?"
DON'T TRY HARDER, TRY DIFFERENTLY!
"If  a child is told 1,000 times and still doesn't understand, then it is not the child who is the slow learner." -Walter Barbee

8 essentials for success with FASD

1. CONCRETE
not abstract

2. CONSISTENCY
and be predictable

3. REPITITION
this is very helpful

4. ROUTINE
keep a strict schedule...even to the point of leaving early to keep the child's bedtime

5. SIMPLICITY
do not overstimulate

6. SPECIFIC
say exactly what you mean

7. STRUCTURE
this is the glue that helps the world make sense to persons with an FASD

8. SUPERVISION
keep the child with an FASD and others safe

-Deb Evensen and Jan Lutke 1997 "8 magic keys"

F.A.S.D. BASICS

Alcohol is a teratogen, which means it crosses the placenta barrier and causes damage to the brain.  The surgeon general says that there is NO AMOUNT OF SAFE ALCOHOL DURING PREGNANCY.  There are 3 reasons why woman may drink when they are pregnant:  1) addiction to drinking 2) she didn't know she was pregnant 3) mis-informed:  she didn't know that alcohol CAN cause harm to the unborn baby.
It is NOT SAFE to drink during ANY part of the pregnancy.  50,000 brain cells form each second during pregnancy.  Drinking alcohol in moderation is NOT SAFE.  Red wine is NOT SAFE.  Alcohol is alcohol and any form of alcohol can harm the unborn baby.  Four factors affect how the alcohol will affect the unborn baby:  1. Timing of exposure to alcohol (1st Trimester is most damaging, BUT remember, alcohol can be damaging in ALL trimesters) 2. Amount of alcohol (Binge drinking is more likely to cause more harm) 3. diet and metabolism of mother  4. resiliency of the fetus:  we each have a different resiliency (more likely to get sick, etc.)  Exposure to alcohol in pregnancy is going to affect each individual differently and in varying degrees.  However, this fact remains: alcohol can take potential away.

Alcohol exposure to the unborn baby can effect/damage the CORPUS CALLOSUM, which affects memory and communication.  It can also effect other areas of the brain.  It often greatly effects the FRONTAL LOBES, which affects impulsive behavior, decision making, judgement/problem solving, generalize learning, attention (being "tuned in"), understanding social cues.
Persons with an FASD may also struggle with attention deficit, hyperactivity, memory deficit, difficulty with abstract, inability to manage money, difficulty with the passage time, lack of control over emotions, and difficulty understanding cause and effect (consequences).

Examples of some of these behaviors: 
1)  Impulsive behaviors/Consequences:  A child with an FASD is continually stealing. (impulsive behavior)  The parent imposes consequences; however, the child continues to steal.  Finally, the parent imposes a harsher consequence:  "if you steal again, we will throw away your blanket" (a blanket that the child is greatly attached to and loves).  The child steals again, the blanket is thrown away; however, the child steals again the very next day.  Consequences do not help the child change behavior in the long term.  Short term consequences are more effective.  The same child is asked (after stealing), "Who do I need to give this back to?" and the child is told if he/she answers right away, there will be no consequence.  The child answers right away.  The difference here is that the consequence is immediate/short-term.  There is no set formula for how a child with an FASD will respond to consequences. The point is that it is difficult for persons with an FASD to understand cause and effect and consequences are typically ineffective in changing their behaviors.

2) Time and Money:  Typically, a person with an FASD can spend his/her paycheck immediately...and do not have a good concept of saving money and paying bills.  A person with an FASD will need an "external brain": someone to help him/her manage money and time.

3)  Generalizing:  A child with an FASD sees an ad for a free cel phone.  It is explained to the child that the little * by the "free cel phone" explains terms of use, which cost money.  The child understand what is said; however, the next day the child sees a new ad for a "free cel phone" and is unable to generalize that what was taught applies to all "free cel phones".

4)  Memory:  A mother works for hours with her child, practicing times tables. By the end of the practicing, the child is able to answer several answers correctly.  The very next day they work on the same times tables, and the child is unable to answer them correctly.  This is just one example of how memory can be affected.

FASD usually becomes more noticeable as the child reaches about the age of 4th grade.  In school, from Kindergarten to 2nd/3rd grade most of the skills learned are concrete.  At 3rd or 4th grade the curriculum becomes more abstract, and the child's social inadequacies are more noticeable by his/her peers.  In general, a person with an FASD's emotional age is about 1/2 of his/her chronological age.  So a 10 year old, appears to be about 5 years old emotionally, and this becomes more noticeable to peers as the child grows older.

FASD is an invisible, hidden disability because the child appears normal physically; however, the brain's ability to function has been impaired.  The person is expected to perform as a normal child would because he/she appears normal; however, the person with an FASD does not have the same brain capacity/ability to function as a normal child does.


--these are my notes/thoughts that I have written after listening to a webex given by Barb Clark, through the  MOFAS organization (mofas.org)

VERY HELPFUL LINK/RESOURCE for F.A.S.D. and F.A.S.

VERY HELPFUL LINK/RESOURCE:

http://www.come-over.to/FASCRC/
-by Teresa Kellerman

Resources

Resources:
While I'm not able to add a direct link to these websites yet, I still wanted to post these resources/websites for a reference:

SAMHSA FASD Center for Excellence: fasdcenter.samhsa.gov

Centers for Disease Control and Prevention FAS Prevention Team: www.cdc.gov/ncbddd/fas

National Institute on Alcohol Abuse and Alcoholism (NIAAA): www.niaaa.nih.gov/

National Organization on Fetal Alcohol Syndrome (NOFAS): www.nofas.org

NOFAS Resource Directory: www.nofas.org/resource/directory.aspx

National Clearinghouse for Alcohol and Drug Information (NCADI): ncadi.samhsa.gov

For more information about FASDs, including topics such as diagnosis and treatment, please visit http://www.fascenter.samhsa.gov.

Paradigm Shift

What is needed to adequately address FASDs is a paradigm shift in how we think:


“We must move from viewing the individual as failing if s/he does not do well in a program to viewing the program as not providing what the individual needs in order to succeed.”
—Dubovsky, 2000

Intervention: JUST GO WITH IT

When a person with an FASD wants something/wants to do something a certain way, go with it, IF it is not going to harm anyone and is giving you the outcome you want. Get in their world...quit trying to make them "fit" into yours.
Persons with an FASD have enough to deal with already...Go with what they want when you are able to...it makes for a happier journey.

FLEXIBILITY helps with this.
My husband told my son it was time to shower.  It was one of those days when my son did not want to shower.  My son finally said, "ok fine then, just buzz (cut) my hair and then I'll shower".  My husband said OK...he buzzed his hair and then my son showered.  
Just go with it....and....Be Flexible.

Intervention: consistent SCHEDULE of a ROUTINE and BE PREDICTABLE

The first intervention I'm putting in place is the consistent SCHEDULE OF A ROUTINE...going right along with this is to BE PREDICTABLE.  For example, I will give my son a 5 min. warning before something changes.  ie. "you have 5 min. left to do that activity, then it will be time to eat dinner"
I typed up 3 schedules for my son:  morning, afternoon, and bedtime.  I put spaces between each step so that it's not visually overstimulating.  They hang on the wall next to his light switch in his room.
*Items in colored writing are revisions:  things I added and/or changed as we tried this intervention.

MORNING:
1.  Make Bed.

2.  Say Prayers.

3.  Get Dressed.  Put shoes and socks by your lunchbox.
*On Sunday put shoes and socks by your scriptures*

4.  Eat Breakfast.

5.  Brush Teeth.

6.  Piano with mom.

7.  Book of Mormon story with mom.

8.  School work.

AFTERNOON (after school):
1.  Shower.

2.  Activity(s) (ask Mom)

3.  Take out Trash.

4.  Dinner.

5.  Sweep floor.

6.  Family Prayers.

UPDATED AFTERNOON SCHEDULE: (5/15/13)
Monday.:  
1. Shower
2. Job:  Clean upstairs family room.
3. Wii
4. Read books

Tuesday:
1. Shower
2. Job:  Clean upstairs family room.
3. T.V.
4. Piano

Wednesday:
1. No Shower
2. Webelo Scouts
3.  Clean and Vacuum upstairs family room
4.  Free choice

Thursday:
1. Shower
2. Job:  Clean upstairs family room.
3  Computer
4. Legos

Friday:
1. Shower
2. Job:  Clean upstairs family room.
3. Bike
4. Movie

BEDTIME:
1.  Put Pajamas on.

2.  Put Clothes Away.

3.  Lay out clothes, shoes, socks for next day.

4.  Brush Teeth.

5.  Say Prayers.

6.  Read Books.

7.  Turn lights out.

8.  Go to sleep.

WHY this blog...

I walked into a health food store with eyes red with tears and with desperation and determination to find the solutions to "fix" my son.  As I searched the store, the supplements, the books, and asked for help, I was led to someone I consider a dear friend because she taught me a lasting lesson.  As I explained the frustrations and problems we were facing with my son, she said something to me that I will never forget...
...she said..."you have been given a GIFT"...This statement completely caught me off guard...a gift? ...No, I had been given a problem, a struggle...BUT she said "gift".  She continued to say that my son was a gift to me because I was now going to begin a "journey" for him and with him, where I would learn and grow so very much. 
That statement changed my perspective.  Up until that point, I had been diligently searching for a solution to "fix" my son.  Now, although my searching didn't stop, my perspective changed to that of going on a journey.
I had always searched.  Since the time my son was only 2 years old, I was continually SEARCHING for answers.  That's one thing I can say for sure...through all the hard times...I never stopped searching.  But now my search has turned into something bigger...a JOURNEY.  The more I learn, the more I realize that it is a LIFE-LONG JOURNEY.  And NOW, I'm no longer looking for ways to "fix" things, but rather, I'm looking for ways to make it a WONDERFUL, MEANINGFUL, LOVING, AND POSITIVE JOURNEY.
Now none of this changes the fact that the journey is at times, very hard...because that is the truth.  This is a HARD journey, but it is also a journey of GROWTH, and a journey of LOVE.

She also said "I" would learn and grow...not "him".  Now, that doesn't mean that he doesn't have anything to learn...because he does.  But I will learn as well.  In fact, I may very well learn and grow much more than him because the more I learn about this the more I realize that one of the greatest purposes of my son's life is for me and and my family to learn and grow because of him. 

So this blog is for YOU, as you are on you own JOURNEY, I hope that something here will help you. I hope something I put in this blog may help at least one person the way my friend at the health food store helped me.  If YOU are taking the time to look at this blog, then YOU must have been given a "gift" as well and I wish you the very best in your JOURNEY.

This blog is also for ME.  As I continue my journey, I need a place to organize my thoughts, new information I find, etc.  This is a great way for me to organize information as I learn and grow on my JOURNEY.  In fact, when it is all said and done, this is probably more for me than anyone.  A place for me to put something that I can come back and read later on.  A place for me to write, when I need to say something.  A place for me to REMEMBER all I am LEARNING on this JOURNEY.

And finally, this is for HIM...for my son.  He is venturing on a JOURNEY of his own and hopefully, at some point in his journey, this blog will prove to be meaningful for him. 


So...WHY this blog?...it is for YOU, for ME, and for HIM as we all JOURNEY on...and it is a HOPEFUL JOURNEY at that.  For I know that there is always HOPE in this life because of my Savior, Jesus Christ.  This I know for sure...I can always find HOPE as I turn to my Savior, Jesus Christ, for He brings HOPE to everything.

"Wherefore, be of good cheer, and do not fear, for I the Lord am with you, and will stand by you; and ye shall bear record of me, even Jesus Christ, that I am the Son of the living God, that I was, that I am, and that I am to come." D&C 68:6

"You are not alone on this journey. Your Heavenly Father knows you. Even when no one else hears you, He hears you. When you rejoice in righteousness, He rejoices with you. When you are beset with trial, He grieves with you. Heavenly Father’s interest in you does not depend on how rich or beautiful or healthy or smart you are. He sees you not as the world sees you; He sees who you really are. He looks on your heart. And He loves you because you are His child.

Yes, the road has bumps and detours and even some hazards. But don’t focus on them. Look for the happiness your Father in Heaven has prepared for you in every step of your journey. Happiness is the destination, but it’s also the path. “Peace in this world, and eternal life in the world to come” is what He promises. That is why He commands us to 'be of good cheer.'

It is also my promise and prayer that as you honor and live true to the covenants, the principles, and the values of the gospel of Jesus Christ, at the end of your journey Heavenly Father will be there. He will embrace you, and you will know once and for all that you have made it home safely."  -Pres. Dieter F. Uchtdorf, Second Counselor in the First Presidency of the Church of Jesus Christ of Latter Day Saints.

TEACHERS need to know about FASD

http://www.youtube.com/watch?v=1jXcuy-1tI8

Helpful FASD links

Helpful FASD links:

http://distillers.tastylime.net/library/FAS/Alcohol-and-Pregnancy-Dont.htm

/http://www.babybornfree.com/

What is an FASD?

F.A.S.D. stands for Fetal Alcohol Spectrum Disorder

FASD (Fetal Alcohol Spectrum Disorder) is not a diagnosis. It is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. It may include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications.

Terminology of diagnosis' that can be given under the "umbrella term" FASD are as follows:

• FAS (Fetal Alcohol Syndrome)
• ARBD (Alcohol-related birth defects)---not very common
• ARND (Alcohol-related neurodevelopmental disorder) this is when only the brain is effected...it used to be called FAE: Fetal Alcohol Effects. The person appears and looks normal, but their brain was effected by alcohol exposure, primarily effecting behaviors.
• pFAS (partial Fetal Alcohol Syndrome)
• PAE: Prenatal Alcohol Exposure: when you know a child was exposed, but no diagnosis.

Dr. Susan Doctor: The HOPE is in the Interventions

I went to this training on April 11, 2013.  These are my notes of what I learned and wrote down from the training:

FASD (Fetal Alcohol Spectrum Disorder) training by Dr. Susan Doctor: she was taught for 23 years by Sterling Clarren, MD (he has studied FASD from the beginning...considered an expert in the field). She said to be sure you know where you're getting your information from, check your sources...don't believe everything you hear, unless it is backed by a source.

Alcohol is a solvent. It potentially damages or kills developing cells in uetero.

FASD is a LIFETIME disability. You need a support system. Not a lot of people have knowledge about FASD: educate them.

Persons with an FASD do not get metaphors, they have a lack of cause and effect understanding.

An individual with an FASD will always need an external executive function/an external brain, in areas where the brain is damaged.

There is no “stamp” of what an FASD looks like. FASD (Fetal Alcohol Spectrum Disorder) is not a diagnosis. It is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. It may include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications.

Terminology of diagnosis':

• FAS (Fetal Alcohol Syndrome)
• ARBD (Alcohol-related birth defects)---not very common
• ARND (Alcohol-related neurodevelopmental disorder) this is when only the brain is effected...it used to be called FAE: Fetal Alcohol Effects. The person appears and looks normal, but their brain was effected by alcohol exposure, primarily effecting behaviors.
• pFAS (partial Fetal Alcohol Syndrome)
• PAE: Prenatal Alcohol Exposure: when you know a child was exposed, but no diagnosis.

You need a team to get a diagnosis for a child with an FASD, get the following things assessed:

*Clincal psych

*Neuro psych

*functional analysis (tells the emotional age of the person)

*medical

*home

(functional analysis and neuro psych are the most helpful)

Alcohol stays in the baby's blood stream for 1 ½ times longer than in mom's blood stream.

Degree of impairment cannot be predicted.

The Central Nervous system/brain starts to develop when the mother is 3 weeks pregnant.

In order for a child to have the facial features required to get an FAS diagnosis, the mother had to have drank alcohol and the alcohol stayed in the babies blood stream for over 18 consecutive hours, between the 19-20 day of gestation. So this is why most people with an FASD do not have the facial features. It does happen that some have FAS, with the facial features, but it is not as common.

The areas of the brain that were impaired by alcohol, cannot be fixed because the structure of the brain was impaired as it was forming. This is why we can't fix it. Damage happened while the brain was forming...structural...you can't fix it. You can't. Accept it. And put interventions into place.

You need to create a support system around the person with an FASD that will make his/her life optimal. You have to keep this system/supports going over time.

How do you keep supports going when he/she turns 18. Parents can extend guardianship, but the child has to sign for this to happen...it may be wise to have the child sign when they are younger.

FASD is not degenerative: it does not get worse; HOWEVER, as the person with an FASD gets older, the gap widens and it looks worse because the gap widens of what we expect them to be able to do.

Accept the “CAN'Ts” Interventions go where the “CAN'Ts” are. When providing assistance, go into the (real) world of the person with an FASD. Go into their world without judgment that they have to be like our world.

Listen carefully to what a person with an FASD says, doesn't say, and shows you behaviorally. If he/she says “I can't do it” it really means he/she can't do it...sometimes it means “I can't do it right now.”

Environmental stimulus will cause a person with an FASD to shut down...overload shuts them down, they dis-engage. Assess the environment to see what is wrong...ask the person with an FASD what is wrong.

2 week rule: Be willing to try interventions for a 2 week period. If it is effective, outcomes will change immediately.

A person with an FASD will do things to try to self-regulate when stressed: rocking, tap foot, repeated behavior, etc. When you see them trying to self-regulate, ask if they would like a break? Give them a safe place to go for a break.

If we respond to their stress response negatively, it will only increase their stress.

The HOPE is in the INTERVENTIONS. When the support systems are what they need to be, overnight there is a change.

Try strategies and see what happens. Ask yourself: “did I get the outcome I was after?” If yes, then you are on the right track. Be prepared to constantly change interventions...always looking at your outcomes...depend on their behavioral/learning responses.

Look at the behavior: what is triggering it? What's stressing? What's overstimulating? What's the environmental stimulus?

Try intervention...2 weeks is enough time...you should see immediate results for desired outcomes. If you don't get the outcome you desire...ask, 'now what can we try?'

Possible CNS (central nervous system) dysfunction caused by alcohol exposure: Learning disabilities, developmental delays, attention deficit disorder, hyperactivity, impulsivity, behavioral problems, poor coordination, tremulousness, diminished intelligence, perceptual problems (sensory paths to brain/how stimulus gets to brain...lack of perception). This is where the “can'ts” are...where the interventions go.

How is his brain processing?...need to know through assessments...if lack of brain processing, etc is caused by mother drinking, you cannot fix it.

Information Processing Characteristics: problems with memory, problems attending, hyperactivity, impulsivity, problems with self-regulation, startle response-kinesthetic/auditory hypersensitivity, better expressive than receptive language, problems organizing incoming CNS stimulus, problems sequencing incoming stimuli, difficulty reading the social cues of others, difficulty retrieving CNS information when stressed, auditory sequencing difficulty, hypersensitivity to others' actions/reactions.

Don't tell a child with an FASD that they have to be responsible in the real world...this is their real world. You can't expect someone in a wheelchair to walk...we're not going to take away the wheelchair so they can be more responsible.

A person with an FASD has an INVISIBLE DISABILITY.

The earlier the diagnosis the better...if interventions begin.

You are only responsible for what you KNOW. If you didn't know before...it's OK...

Can you do what's put in front of you right now?

Everything that's normal doesn't work.

Treatment/therapy/behavioral management will not work for a person with an FASD...their brain doesn't get it...doesn't work that way. It's because of what's going on in their brain---that's why they behave the way they do. There is no underlying intention...they can't do that...their brain is incapable of that.

A child with FASD will be able to TELL you what needs to happen, but will struggle with actually doing it. Instead of asking them to tell you what is expected, have them SHOW you. “Can you show me what you're suppose to do?”

We often talk too much and too fast for a person with an FASD. It is too much stimulus and for them, it becomes chaos in their brain.

Sensory Issues:

Hypo-sensitive: not enough touch..seeks it out...kinesthetic...wanting more touch.

Hpyer-sensitive: kinesthetic...hates the socks, etc...touch

Secondary Issues: Possible Mental Health Issues:

“Little Guys”:

Oppositional defiant disorder

Conduct Disorder

Attention deficit hyperactive disorder

Reactive attachment disorder

“Not so Little Guys”:

Major Depressive disorder

Depressive disorder (NOS)

Bipolar I disorder

Bipolar II disorder

Mood disorder (NOS: not otherwise specified)

If someone with an FASD has any of these possible mental health issues, then the standard of what we do to help people with these mental health issues, does not work with a person with an FASD. FASD is the primary diagnosis.

You can have the support of a social worker: Post Adoption Program. Go to website:

www.utdcfsadopt.org

get a social worker who understands FASD to do a Functional Analysis

Functional Analysis is very valuable for someone with an FASD. Get someone who will take the time to do it well, who understands FASD. SIB-R is her favorite functional analysis assessment...you have to have Bachelor's degree to administer it.

Appropriate Intervention strategies for those with an FASD:

*Provide ongoing, external support throughout the life of the person with an FASD

*Consistently provide structure, routine, ritual and predictability

*Modify behavior/learning plans to accommodate special needs (remember the 2 week rule...track and adapt.)

*”Tough love” behavior management techniques are not appropriate for those with FASDs

*Teach functional life skills

*Reduce stimulus (assess the environment)

*When giving directions, speak clearly and concisely.

*Use concrete language in all conversation.

*Always break instructions into one or two small steps.

*Reduce the number of required transitions whenever possible.

*Do not use techniques based on an understanding of cause and effect and their consequences.

*Individualize all behavior/learning plans.

*When outcomes improve do not remove any supportive accommodations.

*Utilize DMC to coordinate multiple behavior/learning plans.

Recommended assessments for those with an FASD:

*Educational evaluation (WICS-R, Peabody picture vocabulary Test-R – language understanding and expression, The Test of Achievement – reading, math and written language, etc.)

*Adaptive Living: skills/functional analysis (use an instrument that results in an overall developmental age as well as the developmental age(s) of each CNS function analyzed.)

*Speech and language evaluation

*Fine and gross motor evaluation – usually included in functional analysis instruments – OT/PT

*Annual medical examination to determine physiological presentation of symptoms relative to impairment due to prenatal alcohol exposure

*Neuro-psychological Evaluation

*Clincal psycholgical evaluation

*Other...

The brain is where it's at...it's not going to change...persons with an FASD will always need an external executive brain.

Abstract to Concrete (Always use concrete language with a person who has an FASD)

Don't speak by metaphor.

You probably talk too much.

Physiological signs that they have “checked out”: eyes and head down.

Think about how you might be setting them up...look ahead...where was the set up? Instead, set them up for success.

Example: taking a person with an FASD to a restaurant:

We want them to have social experiences, but we have to accommodate.

*limit choices: get a take home menu and ask them what they want before you go: have them choose between a few things

*go ahead of time to see where the best place they could sit...what's in their line of sight?

*go at an optimal time: slow time

*practice at the restaurant

Change your language from Abstract to Concrete:

Examples:

*Drop what you're doing and come see this. Change to: Stop. Put it down. Come in. You'll love this.

*Wait your turn. Change to: You will go after________

*Get ready for dinner. Change to: Wash your hands. Sit at your chair by the table.

*That's not where your books go. Change to: Put your books on this shelf.

*Wash your face. Change to: specific step by step instructions, in order, with visual pictures...or if you make a chart with words, have space between each line.

If parents are distracted, multi-tasking, etc....then the day of a person with an FASD will be “set up”.

Anything sequential is not going to happen with someone with an FASD or is going to be very difficult. They need help with anything sequential, and with goal setting and decision making.

Persons with an FASD do not have the ability to organize stimuli as it comes into the brain.

When they want something, go with it, IF it is not going to harm anyone and is giving you the outcome you want. Get in their world.

Good computer games are good for them...helps them focus.

Lock out what you don't want coming up on your computer.

If you're not getting the outcome you want, you (the parent) are the one that needs to change something...put support/intervention in place.

If they're having problems with self-regulation, ask yourself, what helps them regulate? Music? Etc...try...then assess if your outcomes are what you want.

They learn by REPITITION, not by CONCEPTUALIZING.

Example: a girl was always too close/in others space; when the girl approached people, each person held up their hand and said “this is how close you can be”...they said it in a loving way...repeated over and over

Therapy is too abstract...doesn't work for a person with an FASD.

Time out doesn't work the way you want it to, or are thinking it is. BUT time out does give you and the child a break, which is necessary at times.

Don't use consequential learning...it won't help.

Focus on the good things they CAN do.

The HOPE is in the interventions.

A person with an FASD will always need an external brain.

Who's going to do what to provide the external brain.

All the supports: mom an advocate his entire life.

Make what needs to happen, happen so you don't lose services.

Get 504 set up in High School OR sooner

Have child sign to extend guardianship at a young age...but do it with “limited liability”.

We only enable when we do stuff for people that they can do.

Dynamic Case management includes:

person with an FASD

caregivers

representatives of all agencies working with person

the lead agency is the one that spends the most time with the person with an FASD

Answer the question: what has to happen in the next month or he will lose services? This group makes it happen...provides the external brain...does what needs to be done to keep services.