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.