Susan Doctor on Intervention for FAS
FEN Conference April 1, 2000 Madison, Wisconsin
(Notes by Teresa Kellerman)
Video of mother: "I saw the posters that say alcohol can cause mental retardation, but I thought 'not my baby.' But it is like playing Russian Roulette, because you never know what, when, where the alcohol will hurt the baby."
Susan Doctor: Last night on the women's cable channel, I watched an interview with Rickie Lake, who said, "When I was pregnant, I was very careful to only drink one glass of wine a day." The worst part of this is that she was speaking to such a wide audience of young women, who could follow her example.
I work with junior high kids and with the people around them. My mentor is Sterling Clarren. I met him 10 years ago and asked him to be my mentor, he is on my doctorate committee, and I'm lucky to have fallen into that group of people, because I wanted to learn about FAS and there is no place to learn about FAS. As you know there is a huge difference between sitting in a classroom and being right there in the middle of it, like drug court. Instead of saying a person has a diagnosis, I say that person exposed to alcohol/drugs in utero and has the learning/behavioral profile consistent with that exposure. The kids say that it is so amazing to see the results when intervention is appropriate. What Sterling has taught me is that a person with FAS/FAE, depending on the severity of impairment, will ALWAYS need an external brain. Key words are "always" and "external." Intervention means us. If intervention is not working, then we need to change what we are doing because it means the external support is not appropriate. (It is better if we don't use the term FAE because there is a continuum of effects as seen in the IOM''s 5 categories.)
One time I did the red-eye special, and couldn't get out of bed to walk, as I had 4 degenerative disks in my back that flared up from sitting on the plane so long. I needed extensive therapy and exercises that I need to do each morning and evening. What I am doing is strengthening the muscles around my spine. There is nothing that can be done about the disks, but I am strengthening the supports around the disks. Get it? But you might not want to use metaphors to make a point, because some of them won't get it. One of my clients said, "Well, that was a nice story, but what did you tell me for?" Don't use metaphors to teach them. One young lady said "Why don't you just tell me what you want me to understand." If I stop doing those exercises, I'm going to be back in excruciating pain. If we stop providing the supports to the person with FAS/FAE, what happens? They fall over. If you get something in place for your child at age 5, don't expect that support to work when they are older, it will need to be changed. As they get older, the range of abilities gets wider, and they need more supports. The older they get, the fewer the services. Two limiting factors are time (program might be set up to last a certain amount of time) and money. When the supports weaken, the person falls over.
We need to believe them. You know how when we ask them why they did something, they say "I don't know"? Believe them, they don't know. Of course, sometimes they will try to manipulate you, because they are people just like us. Don't set them up. We don't have to make them like us. We need to support them and adapt their environment to help them. They don't need to learn to tie their shoes (insisting that they come into our world), they need us to give them Velcro shoes (we meet them where they are).
The first adult I helped taught me more than any book I have read. She's been with me for 4 years. Every time she attains success, she gets money, then she gets drunk, gets arrested and is back in the system. If this happens over and over, the court has to realize that it is not working. Something needs to change. The key is education. We have to educate people so they understand that the traditional methods of intervention just don't work.
Difficulty Translating Information From One Sense Into Appropriate Behavior (gaps in links)*
Difficulty linking what is heard with appropriate behavior
Able to "talk the talk, but not walk the walk"
When you give them crucial information, ask them to repeat it back to you in different words. When we want them to remember a rule, we repeat it to them over and over, but it is usually worded in a negative "don't" and what is repeated and remembered is what we don't want them to do. Just because the child remembered the math yesterday doesn't mean they can remember it today. We must help people understand this about our loved ones, otherwise the world will become very judgmental.
When you first heard this information, you thought, "Of course! Mom drank, and this is what is going on with this child!" The lights go on. Without this awareness, we tend to be very punitive with the child.
Difficulty Generalizing Information (gaps in association)*
Learning information in isolated pieces
Inflexibility of thought
Difficulty predicting outcomes
If you can't sequence, you can't do cause and effect. We need to look at the difference between "can't" and "won't." As Jan Lutke says, it's not a matter of non-compliance, it's about non-competence. ("Spider-web Walking" is how she describes how her daughter thinks.)
If we change the rules and change the rules, and they can't keep up with it, they get punished. We need to listen to what we say. We talk with lots of holes in our speech, and we expect others to fill in the blanks, but our kids can't do that. Example: Hot lunch tickets - purchased by mom. Child has the ticket for lunch. Teacher says, "Everyone getting hot lunch in this line, everyone getting cold lunch in this line." He waited for teacher to call the kids with lunch tickets, so he went out to play on the playground. After lunch period, time for meds, the child is on several different meds, on empty stomach, he got really sick. Another example: Girl with FAS on birth control. The doctor assumed that she knew to take it orally. I want you to know that birth control pills taken as suppositories are not effective. Our judge in family court just about had a heart attack when he found out that one of our clients followed his directions exactly. He had told her in court, "you must not drive your car," so what did she do? She went out and she borrowed a car. These experiences are specific to "inflexibility of thought" (above).
FAS is an umbrella diagnosis. All the other diagnoses fall under the FAS umbrella. We need to look at any behavior issues or mental health issues through the eyes of FAS, which is the main disability on which we need to focus. The reason why looking at FAS as the umbrella is best is because, if we do that, we will remember that there are information processing deficits that must be taken into consideration when treating the person with FAS. So, if I am treating "johnny's" manic depression, I will need to do so remembering that he processes differently.
Concentric circles of Intervention Strategies:
Center: Individual interventions applying to specific individuals with FAS: Assessment. It helps to spend a little time with them.
Next step out: Systemic case management (wrap-around services): Should be facilitated by the person who spends most time with the individual, like the teacher or parent. Has to be systemic, not just within the agency, but need to pull in representatives of every agency that works with the individual (foster care, birth mom, probation officer, therapist, county, school) At least once a year, quarterly is best. It's a good opportunity to educate people who don't understand.
It's an opportunity to talk with each other to get everyone on the same page. Saves time and trouble later, even though it seems inconvenient for some at the time. Valuable information is shared, like changes in meds or other crucial circumstances that need to be communicated to all. Most people are trying to help, they just need the information so they don't become judgmental. You definitely need input from the person, but let them decide how much they want to be involved. They might get tired of hearing "FAS" or might feel intimidated having to meet with all the professionals. Maybe they just want to meet for a few minutes, say what they want everyone to hear, then leave. Or they can meet with someone they trust to share with that person, who can speak on their behalf at the meeting. They don't have to attend unless they really want to.
Outside: Policy Issues. The farther away from the individual, the greater the impact on the individual if it doesn't work. If the policy provides for services up to a dollar amount and the money runs out, no more services. The policy issues can be as damaging as if the individual were not getting the personal support. What makes all this work is the support person. The needs don't change, but the services do. Don't ever say "We can't possibly do that." Say "Now how can we do that?"
Susan's Intervention Theory: Ask:
What is currently available?
What is needed?
How can what is needed be provided?
THINGS TO AIM FOR:
Organization (and I'm not talking about filing cabinets, I'm talking about getting clothes ready to put on, in order so that the last thing laid out is the first thing to put on) (Open shelves with labels, so they can SEE where things are)
Stimulus Reduction (consistent across environments: what does the home look like? Too much chaos at home?)
Transitions (plan ahead, make a smooth path)
Academic Placement (looking forward to careers and jobs)
IT TAKES A VILLAGE (obviously this is not an original) When you look at FAS as a community problem, you no longer can just look at the mom, responsibility belongs with the entire community.
* Barbara Morse's work, interpreted by Diane Malbin
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