KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
Most of this has been published here before for the Thursday night health series. I have also published versions at Street Prophets and Associated Content.
My son, who is 25, has fetal alcohol syndrome, as well as either bi-polar disorder (diagnosed when he was 14) or schizoaffective disorder. It is hard to make an accurate diagnosis because he also has a generalized substance abuse disorder. When he was diagnosed at 14 I felt enormous relief. Now I knew he would be able to get care after he turned 18, since he is not mentally retarded, and without major mental illness there is no place in the system for adults with FAS though they need lifelong support.
He cannot live at home, although he wants to, because of the holes in the walls that he punched or kicked, the things he stole or broke, and the threats he made to me. I sleep in the living room because I have not had the energy to clean up the glass from the broken window in my bedroom (it's been a very long time). I started sleeping in the living room when he still lived here because I never knew who he would bring to the house at any hour, and if I were in the living room at least I stood a chance of waking up to deal with it.
All this fed into my depression, which got worse while he was adolescent, but which also got me into treatment after some years without. For me, things began to change when I realized that I had to tell people what was happening at home: not "he verbally abuses me" but "he says you fat fuck" or whatever. That gave me back some control and began the healing. Sadly, healing for him is not so simple.
Sometimes he lives in a group mental health setting. Often he does not, because he has trouble with rules or with the other people living there. He sometimes tries to live in an apartment, but that never lasts since he cannot take care of himself. Sometimes he is on the streets, and I don't hear from him for weeks or months at a time.
People with FAS need what Teresa Kellerman calls an "external brain." I was able to provide much of that structure for him when he was younger, but as he went through adolescence and started using drugs and drinking everything became more difficult. It climaxed when he was using methamphetamines, and I could no longer talk him down when he was losing control. Then I got my first restraining order and commitment for him, which turned out to provide the structure he needed.
Fetal alcohol syndrome is the largest cause of mental retardation in the country (though most persons with FAS are not mentally retarded), and is entirely preventable. You have probably seen the ads talking about the importance of not drinking during pregnancy. But it is not only women of childbearing age who need to be educated. Doctors, especially OB/GYN's and pediatricians, teachers, social workers - everyone who works with children, in fact - need to learn about the effects of pre-natal exposure to alcohol. Also judges, probation officers, and others working in the juvenile and adult criminal justice systems; most of them have quite a bit of contact with the victims of fetal alcohol exposure, whether diagnosed or not.
Much of the education about FASD (fetal alcohol spectrum disorders) comes from parents of children with the condition. Many of us adopted our children, many are birth parents who have become sober and live with guilt it is hard to imagine. As parents face the difficulties of raising kids with FASD, we face the additional challenges of working with professionals whose knowledge of the disorder may be minimal or non-existent. Parent-to-parent support and learning are vital to many of us. Many experts in the field are also FASD parents. This is truly a grassroots endeavor.
What is FASD? It is a spectrum of neurological disorders. Alcohol passes easily through the placenta into a fetus' bloodstream. Depending on many factors, including the kind and/or frequency of drinking, and the stage of fetal development when drinking occurs, symptoms can include abnormal facial characteristics, serious medical conditions, and an array of behavioral symptoms including hyperactivity, poor impulse control, learning disabilies, problems with abstract thinking, memory problems. Teachers often think a child is lazy when she does not know something she knew the day before, but this is literally true. The corpus collosum, which is the membrane connecting the right and left hemispheres of the brain, is almost always damaged, as is the frontal cortex, which provides executive functions such as planning, recent memory, and such. Not surprisingly, sequential thinking and such concepts as cause and effect, and action and consequence, are also generally absent to some degree. Frequently co-occurring conditions include ADHD, childhood bi-polar disorder, substance abuse, depression, criminal behavior.
After all the noise about crack babies many years ago, we learned that most crack babies, given a stable and caring environment, were ready for school by the time they reached school age. The children who were still affected were often those who also had some degree of FASD.
UPDATE: This is my first time on the Rec List. Thank you all. I'm glad it's for such an important topic.