So you suspect FASD, now what?

"The greatest obstacle that our kids must overcome is the chronic frustration due to unrealistic expectations." - Dr. Calvin Sumner, in a conversation with Teresa Kellerman.

Have you ever heard of the term "organic brain damage"? It's something I'm becoming increasingly interested in learning about. Boo has "organic brain damage". This means he was born with it. His brain did not form in the same way an average person's brain forms.

"Individuals with FASD often have symptoms or behavior issues that are a direct result of damage to the prefrontal cortex, which is the part of the brain that controls “executive functions.”" from Fasstar.com

Executive functions include:

• inhibition
• problem solving
• sexual urges
• planning
• time perception
• internal ordering
• working memory
• self-monitoring
• verbal self-regulation
• motor control
• regulation of emotion
• motivation
• judgment

So when you think of a child with FASD, you must think brain damage or “static encephalopathy” which means brain damage that is permanent and unchanging.

A child with FASD may be capable of making good choices one minute and then "forgetting the rules" the next minute. They may be able to "hold it together" for authority figures or in instances when they are fearful or nervous. This does not mean that they have the "capabilities" to hold it together when they "choose". This is a common misconception.
Children with FASD often do not make the connection between action and consequence (which is why traditional behavior mod doesnt always work well for them). They are impulsive by nature and remember, even though they may repond to a consequence one time does not mean they will retain that information or learn from their "mistake". Confused yet?

Ok, so HOW do we teach these children? What DOES work for them? Well, remember that no two children are the same. As a parent, you must get to know your child first and then adopt a plan. Here is something I found to be simple yet helpful.

8 Magic Keys:
Developing Successful Interventions for Students with FAS

by Deb Evensen and Jan Lutke

1. Concrete

Students with FAS do well when parents and educators talk in concrete terms, don’t use words with double meanings, idioms, etc. Because their social-emotional understanding is far below their chronological age, it helps to "think younger" when providing assistance, giving instructions, etc.

2. Consistency

Because of the difficulty students with FAS experience trying to generalize learning from one situation to another, they do best in an environment with few changes. This includes language. Teachers and parents can coordinate with each other to use the same words for key phases and oral directions.

3. Repetition

Students with FAS have chronic short term memory problems; they forget things they want to remember as well as information that has been learned and retained for a period of time. In order for something to make it to long term memory, it may simply need to be re-taught and re-taught.

4. Routine

Stable routines that don’t change from day to day will make it easier for students with FAS to know what to expect next and decrease their anxiety, enabling them to learn.

5. Simplicity

Remember to Keep it Short and Sweet (KISS method). Students with FAS are easily over-stimulated, leading to "shutdown" at which point no more information can be assimilated. Therefore, a simple environment is the foundation for an effective school program.

6. Specific

Say exactly what you mean. Remember that students with FAS have difficulty with abstractions, generalization, and not being able to "fill in the blanks" when given a direction. Tell them step by step what to do, developing appropriate habit patterns.

7. Structure

Structure is the "glue" that makes the world make sense for a student with FAS. If this glue is taken away, the walls fall down! A student with FAS achieves and is successful because their world provides the appropriate structure as a permanent foundation.

8. Supervision

Because of their cognitive challenges, students with FAS bring a naivete to daily life situations. They need constant supervision, as with much younger children, to develop habit patterns of appropriate behavior.

When a situation with a student with FAS is confusing and the intervention is not working, then:

• Stop Action!
• Observe.
• Listen carefully to find out where he/she is stuck.
• Ask: What is hard? What would help?

I don't have the answers. I'm just beginning this journey myself. Boo has seen so many professionals who have glossed over the fact that he was drug and alcohol exposed. They attributed his behavior and emotional challenges to genetics or our parenting. The sad fact is that there are no hard markers for Fetal Alcohol Effects or Alcohol Related Neurodevelopmental Delays. 80% of people affected by FASD have no physical features of the disease. It is their brain that is affected. It is estimated that 70-85% of inmates need substance abuse treatment. It is also estimated that 61% of adolescents with FASD have been in trouble with the law. These statistics are both shocking and terrifying. FASD is real. We need more education out there and we need more funding for research. Our prisons are full of men and women who started out as innocent children born to women who drank alcohol and did drugs. Who is going to stop this cycle?