The original Fetal Alcohol Syndrome*Family Resource Institute study called Interventions That Work was started in a retreat setting with thirty-four families living with someone with brain damage due to prenatal exposure to alcohol. Eventually the study grew to include over four thousand families.
Our procedure was simple. We asked parents and caregivers to tell us what they were doing that worked to solve school problems, behavior problems, legal issues, problems with family routines, and any other concerns that impaired the ability of the family to function, or impaired the health and safety of the family members.
We developed a large body of information that eventually became the collective family experience. We learned that youth who have brain damage and are in trouble for breaking the law do much better with a diversion plan rather than jail time. The diversion plan doesn’t let the offender off of the hook, but allows the disabled person to fulfill their obligation to society without exposing them to more of the criminal element.
We learned some techniques for working with schools. We also learned that our children with disabilities were often better served in private schools or homeschool. The students needed to be protected from bullies and take their lessons in a manner that allowed them to learn. More than one parent mentioned fluorescent lighting and toxins that come into the classroom on other student’s clothing as deciding factors when they pulled their children out of school.
Parents shared techniques for communicating with their children who had brain damage. One of the important aspects of the study was realizing that the age of the child didn’t make much difference with communication. Parents of forty year-old children still needed to keep it simple, concrete and specific.
We found a large variety of adult living situations. A few of our children who function very high have been able to marry, hold down a job and live independently with a spouse who makes decisions and manages money. Some of our children ended up living in group-homes and sheltered assisted living. My own foster daughter lives in a lock-up apartment building with family close by and assistance from a caregiver. The point was that we had to think about her housing options in a manner that most parents do not. She could not find safe housing on her own. We also learned that parents have less trouble if they make adult living options part of their normal planning and plan to get the kid out of the house sooner than later. This was especially important with young adults with Fetal Alcohol Syndrome.
We had a subset of parents representing about one third of our information base who talked about problems with environmental and dietary challenges. Gluten intolerance was common and resulted in bizarre behaviors or more physical symptoms than normal. We found many other common food allergies in addition to sensitivity to environmental pollutants like car exhaust. Tobacco allergies were common enough to make going out in public challenging for our youth. When a neuro-typical person encounters an allergen they behave in predictable ways and we sympathize with their discomfort. When the person with brain damage encounters an irritant or allergy anything goes--from rage attacks, to weeping to passing out. My daughter would suddenly lose all recognition of her surroundings and pee her pants when she encountered tobacco smoke. Life is rough for those with brain damage.
One of the most important pieces of information we found in our fourteen years of research is that people with brain damage due to prenatal exposure to alcohol really are mirrors of those around them. When our youth and adults are interacting with responsible people who have high standards of honesty, they will live up to those standards of responsibility and honesty. Let one pornographer, drug dealer, thief or gang recruiter near our vulnerable population they will follow their new best friend down the primrose path with no concept that this behavior is different from their family and church values. We really, really need to protect our vulnerable populations from those who would exploit them, in the same manner as we protect a three year-old.
In our discussion of violence in our communities, we need to take into account the needs of our disability community and the lessons parents have learned over the years. One of the things we learned in our attempts to apply interventions that work is that when we structure our classrooms, faith communities and social services to meet the needs of the person with brain damage, the rest of the community has their needs met as well.
As part of our national dialog, I am concerned with the President Obama’s proposal to have the Center for Disease Control research causes and interventions related to violence in our communities because they are not set up to do the type of research FAS*FRI did. Despite the fact that we had members of the FAS*FRI staff working with the CDC on the committee related to FAS issues they did not treat our study with the respect it deserved because the data came from parents rather than from university studies. We really need the dialog on violence to include those people who live with at-risk people on a daily basis and those who serve at-risk populations. I don’t see this happening, which is why online support groups for families are so important. I am hoping that our on-line communities will speak up on the role of cognitive disability in creating violence in our communities as well as the victimization of vulnerable people.