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:
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.
