What Does Success Look Like?

Most of my regular readers know that it is only within the last three years that I left the professional world to concentrate on home educating and parenting. In my life three years ago, I worked as a nurse educator. I have a master’s degree in Critical Care Nursing. I was never even remotely interested in psychiatric nursing. The field of psychiatry doesn’t make sense to my analytical math and science brain. I like things to have a concrete, well-defined cause and effects.

If I were to go to my medical doctor complaining of nausea and vomiting, the doctor has work to do. Nausea and vomiting is not a disease; it is a symptom of a disease with numerous possible causes. The doctor will likely do a physical exam and start narrowing down the possible causes to a single pathophysiology. In addition to assessing my gut, his (or her) intellectual inquiry will cause him to assess my nervous system, look for infections and changes in my metabolism. He will likely question me about my diet and prescription/over-the-counter/herbal drugs I am taking. If he believes I am Sarah, he might even request a pregnancy test. The final treatment plan depends on what is causing my symptoms.

What I have just described doesn’t occur in psychiatry. When a patient (or in my case a parent) approaches a psychiatrist complaining of a symptom in the child, the psychiatrist often treats the symptoms. Shutting down and complaints of depression are treated with drugs that usually help depression. If that doesn’t work, a mood stabilizer can be tried. As doses are adjusted and new medications are tried, symptoms often get dangerously worse. I have hated the process. But, what irritates me most is that the psychiatrist acts as if the symptoms are all that matter. It is not incidental that my child has fetal alcohol syndrome. It is possible, in fact likely, that Marissa’s mood swings and depression have a different underlying pathophysiology than mood swings and depression in a person who has not been prenatally affected by alcohol. In all the years I have been parenting Marissa, I have never met even one psychiatrist who understands FASD. I am not saying they aren’t out there; I just haven’t met one.

I have contacted Children’s Mental Health and asked for a case manager for Marissa. Our home is not stabilizing. Marissa has sobbed and rolled on the floor night after night for hours at a time. She has said, “I guess this is as good as life gets.” Scarily, when we were at the zoo on Sunday, I noticed a row of cuts running down Marissa’s arm. Marissa has consistently said that she scratched the cuts using a fingernail. Her explanation of the mechanism of injury doesn’t match the evidence that is left on the skin. The cuts were made by a sharp object, a knife or a razor. Besides, either way, self-injury is self-injury and is a sign of underlying emotional pain. Marissa’s new case manager recommended that we have a psychiatrist review Marissa’s medications. Marissa has been on the same exact drugs and doses since 6th grade. She was stable until a recent horrible choice resulted in her being grounded and having to quit her job. I am less than thrilled to begin adjusting medication doses.

Her caseworker also wants Marissa to be followed by a psychologist to teach her coping and social skills. We tried this in the past. Marissa had a whole three visits which were paid for by a grant that no longer exists. Our insurance doesn’t cover individual counseling; group therapy with people who are neurotypical is beyond useless. In fact, in my experience, it can exacerbate problems. When the grant money dried up, we applied for TEFRA but did not qualify. We applied again on Monday. As I read the criteria, I wonder if we will qualify this time; I doubt it. I am not really overly concerned about the possibility that we won’t be following through with individual counseling. Can you teach someone who is socially immature because of brain damage good coping and social skills? Frankly, I don’t have any hopes that the program will work.

It is sometimes hard to read home school blogs when parents define success as getting into college, mastering an instrument, starting a business, or whatever. My definition of success seems meager in comparison. I define success for Marissa as not hurting herself or others, living in a safe environment, living a life that is not marred by addiction, not having an unplanned pregnancy and, if she were to become pregnant, giving birth to a child unaffected by prenatal exposure to alcohol and drugs.

Barbara asks:

We will be “providing job training/placement and subsidized housing” for our oldest – we’re sending him to college (same, is it not?) For now, couldn’t you continue with the plan and lifestyle you have, given that you have about 5 more years until she would be college graduate age?”

Actually, that has always been our plan. The problem with this plan is that Marissa has to cooperate with it and I don’t think she will. Marissa wants to be “normal.” She doesn’t realize how vulnerable she is. She cannot identify consequences so, when I tell her she cannot do something because it is unsafe, she believes I am unreasonably restrictive. Last Tuesday Marissa snuck out of the house a little after 11:30 PM. She was with two boys she didn’t know well. They were all going to another boy’s house to “watch a movie.” The boys she was with all drink alcohol. One of the boys uses marijuana. She did not believe that drugs and alcohol would be part of her environment that night because people use drugs and alcohol at parties and she was just going to watch a movie. No matter what I said, Marissa was not convinced that being in a secluded place with three boys that she doesn’t know well when no one knows you are there is extremely dangerous. Marissa believes with all her heart that when you are 18 you can make your own decisions without having to get mom’s or dad’s permission. I believe with all my heart that I have the right to set some boundaries for people living in my home. Even when she is 18, I will not let her leave the house at nearly midnight to hang out with boys she doesn’t know well.

I know of a mother whose daughter presents similar to Marissa. She has a normal IQ, but still has poor judgment and immature social development associated with FAS. Her mother had struggled through getting services for her daughter in school. Her daughter had graduated from high school with good enough grades to qualify for admission into college. She spent part of the spring and summer visiting campuses with her daughter. It appeared her daughter would be one of the 1 in 10 adults with FAS who live independently without trouble with employment. But, on her daughter’s 18th birthday, her daughter left home. She did not have a job. She was not receiving public assistance. She was homeless. She hung out during the day, partied at night. Over winter she slept on the basement floor of a home of someone who took pity on her. The mother was angry, “I can’t believe they encouraged me to look at colleges with her. I should have been looking at job training and group homes.” The “they” were the “village” of professionals who were guiding this mother as she valiantly tried to help her daughter. The daughter was thrilled to be making her own decisions and living her own life. She was less thrilled about being homeless and sleeping on a cold, damp cement floor over winter, but she did not understand how her own behaviors and lifestyle choices were contributing to her situation.

It is my hope that, if Marissa decides to leave our home at 18, there will be sufficient documentary evidence that because of FAS she has major difficulties with self-help and independent living. I hope that with job placement and support, public housing and a representative payee I can keep Marissa off the streets. The first time I brought Marissa in to be evaluated for FAS the evaluating physician did not give her a diagnosis. There was nothing in her records indicating that her mother had used alcohol during pregnancy. The fact that she had a 13+ year history of addiction at the time of Marissa’s birth meant little. We have since reconnected with Marissa’s family and have confirmed exposure and Marissa has been officially diagnosed. At that visit, I cried. The physician asked me why I was crying and told me that Marissa’s mother’s story need not be Marissa’s. He told me that my adopting Marissa was the “treatment” she needed. Sadly, Marissa’s life may well parallel her mom’s. Despite a borderline IQ, poor judgement and poorly developed social skills, Marissa’s mom did not get assistance. She was unemployed and unemployable. No one was interested in her until she had two children in foster care. Only then did she qualify and get services. She had been on the streets or living with violent, abusive men for over a decade. Can I live with the possibility of Marissa’s life paralleling her mom’s experiences? Only if I know that I have done everything in my power to prevent it.

So, we look for help in places I don’t particularly believe there is any. And we redefine normal and success. We pray a lot and we hope our friends and family understand. But, the awful truth is that FASD is at times very isolating, not only for the individual but for the family too.