Image by Gordon Johnson from Pixabay
(10-19-20) A mother from Fairfax County, Va., recently sent me an email about her son who was about to be released from probation. In addition to having been diagnosed with a serious mental illness, this young man also is an alcoholic and was born with fetal alcohol spectrum disorder that he inherited from his birth mother. It is difficult for individuals to get treatment for a mental disorder. When you add an addiction, it becomes even harder and if an individual refuses help, there are even fewer options. I asked the mother to share her family’s story and I was stunned when I received a detailed account that dated back to her son’s birth. The mother and her husband have tried every possible program in Fairfax with limited success. I am posting her account anonymously and with pseudonyms to protect the privacy of those involved.
Dear Pete.
Our Family History – Born With FASD
Two birth mothers, two babies born two years and two weeks apart. What do the women have in common? Drugs and alcohol, lots of alcohol. What do the babies have in common? Fetal Alcohol Spectrum Disorder.
Our first child, Susan was born in 1990. At eight weeks she contracted pneumonia. At seven months, when we first brought her home, she had congenital CMV—cytomegalovirus—transmitted to her prenatally and which she has for life. This could have caused her liver to fail, her spleen to fail, or cause more lethal effects. She was on antibiotics for six months. At two years old, she contracted pneumonia a second time.
Still, over all she was a happy, very active baby and toddler. In first grade, she was diagnosed with ADHD.
Our second child, Paul, was born in 1992. He was not a happy baby. He screamed himself to sleep. He watched his big sister as she acted out her toddler behavior and stayed serious and impressionable but not assertive. At three, he started raging. At four he was evaluated for slow learning and speech delay.
At five, he tried to kill himself with a kitchen knife.
He was diagnosed as anxious with depression and put on medication. At six he began cognitive therapy for depression and anxiety with a child psychologist.
Some people say that the childhoods of their children just fly by for them as parents. For us, every day was a long, intense, and anxious day. Susan and Paul both went to family daycare during the day because both my husband and I worked full time outside the house. At the end of the day when we picked them up, Susan was hyper and Paul was depressed and often angry. Evenings at home were about reeling Susan into her routine and making sure Paul was attended to enough not to be overshadowed by his sister or cause a meltdown.
Little did we know that everything would change for the worse once they reached school age. Susan started kindergarten and was the center of the activities. She liked school and her teacher, but she was not a fast or attentive learner. She kept up with the simple scholastics but most enjoyed the games and fun time. Two years later, Paul started kindergarten and had a harder time with learning and staying on task. First grade for Paul was the start of his “school failure” and pull-out sessions for learning disabilities. He could not comprehend the meaning of numbers and could not begin to put them together. He was given extra instruction and would improve for a day or two but no more than that.
First grade for Susan was when her hyperactivity was officially diagnosed as ADHD. She did not want to sit still. She also had short-term memory retention issues. No one mentioned the possibility of FASD, even knowing her history. She was slowly learning letters and numbers and remained the leader of her circle of friends.
At home, Susan did not listen to her parents about what she was expected to do. She ate dinner and left the table. She threw her clothes on the floor. She interrupted story time and would take a long time to wind down for sleeping. Paul continued the meltdowns he had had since the age of two. He escalated to throwing objects at his parents, often at our heads, screaming and crying, shaking and expressing a lot of anger.
“Time out” was our discipline of choice but we often had to give Susan extra minutes for noncompliance or hold Paul in the chair during his raging.
At school, Susan continued to blow through her work with little ability to concentrate. She was, however, on her way to reading by third grade although not well. That was the year that Paul was placed in some special education classes. In first grade he was misdiagnosed as having ADHD and attended group therapy for a while with other boys with ADHD. After some time, he left the group as it became apparent that he did not have ADHD. By second grade, it was determined that Paul had bipolar and was put on medication even though he then acted more erratic. No one mentioned FASD. By third grade, he was transferred to another elementary school so that he could be in all special ed enclosed classrooms and was given his first IEP along with continued speech therapy.
An Individualized Education Program (IEP)
- Is a written statement.
- Is for a child with delayed skills or other disabilities.
- Is developed, reviewed, and revised in a meeting at the beginning of each school year.
- May be requested by either the school or parent at any time.
- Describes the goals the team sets for a child during the school year.
- Describes as any special support the child will need to help achieve them.
Susan transferred too so that we had both children in the same place. By fourth grade, she also had what’s called a 504 Plan. A 504 Plan is a plan developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives accommodations that will ensure their academic success and access to the learning environment.
Susan’s fifth-grade teacher did not believe in 504 Plans and refused to follow it or allow Susan any exceptions because of it.
Her sixth-grade teacher did follow it and Susan did okay in school overall. We tried having her coached by someone who specialized in knowing about ADHD, but Susan did not respond well and was resistant to coaching. She graduated from sixth grade with her classmates. However, she had also discovered cigarettes, dextromethorphan (Triple C), and sex. She was only 12 years old. We found that her lack of self-awareness and unwillingness to share her feelings led to a lot of lying about what she was or was not doing and with whom. She sneaked out of the house to meet with boys and friends. Both she and Paul were in after school care with a neighbor but went home regularly to be alone or to meet others. The caregiver was overwhelmed by their behavior in her house and allowed them to go. We were unaware of this at the time.
Fourth and fifth grade for Paul was awash with school failure, school phobia (every morning crying fits), paranoia about the state of the dangerous world, and falling more emotionally behind his peers. He was assessed by the school system in third grade, fourth grade, and seventh grade with the same conclusion: poor school performance based on learning disabilities, which later switched to school failure based on emotional disturbance.
At age 10, Paul began seeing a different practitioner, a psychiatrist who diagnosed him with FASD and co-occurring obsessive-compulsive disorder, oppositional defiance disorder, and mild psychosis. His medications were changed.
Middle school for Susan was traumatizing, particularly because of one teacher whom she had for math who would ridicule her and humiliate her in front of the class. The principal of the school was not sympathetic and held the position that Susan needed to fall into line because high school was going to be even tougher. During the winter of eighth grade, Susan became so despondent that she overdosed on Tylenol and was only saved from death because her stomach began to hurt very badly, and she told her mother what she had done. She had already said goodbye to her friends and was prepared to die. Her mother took her to the ER and afterward Susan was admitted to the hospital for three days under the watch of a suicide prevention volunteer, who stayed in the room at all times. After being released, she began counseling with a cognitive therapist to whom she lied constantly, without the therapist catching on. When it became apparent after many months that Susan had no intention of taking the therapy seriously, we stopped going.
When Paul reached seventh grade, he was in only special education classrooms. Even so, he was approached by different boys to join their street gangs. At this point, he had not progressed academically for several years and was detached from any engagement in education. He was evaluated privately by a neuropsychologist, who also evaluated his sister. Paul was found to have organic mood disorder with possible bipolar characteristics and pervasive depression. Susan was found to have ADHD and histrionic personality disorder.
From 13 to 18 years old, both Susan and Paul were out of control personally and academically.
Paul joined a “click,” a subset of a street gang, in this case, MS-13. He became the enforcer for his click and engaged in crimes with the other members for three years. He began drinking heavily as well as using marijuana and other drugs. He also went out at night after we were asleep and took our car out driving underage and without our knowing for years. Susan at 17 moved out of the house for three months and into the apartment of a gang leader where she had copious amounts of cocaine, marijuana, and indiscriminate sex. Luckily, we had her on Lessina birth control since she was 15. Neither Susan nor Paul finished high school, although Susan did earn her GED later when she went to a training school for 18 months.
Our daughter is now 30 and her brother is 28. Susan has a five-year-old son who is healthy and unaffected by alcohol in utero because Susan did not drink while carrying him. She earns money doing childcare for friends and lives with her son’s father, although they do not have a relationship anymore. Paul was in a psychiatric hospital for a week once, has been homeless, and has been in jail twice. He does have a driver’s license, as does Susan, and has had a succession of cars that we have provided him, the last one of which he totaled, so he is currently not driving. He has had many, many professionals trying to help him. Recently, he had a mentor and a coach. We paid for their services. He did seem to be doing better than he had in a long time for the nine months they were with him. But he didn’t change in any basic way so the mentor and coach said there was nothing further they could do for him.
He has lived in county housing for individuals with mental illnesses, been befriended by peers, been through numerous recovery programs, but his resistance remains too overwhelming and his mood swings too hard to live with. We have spent our inheritance and most of our savings trying to help him with cars, apartments, coaches, mentors and psychiatrists. At our age, we simply can’t afford to spend any more. We are mentally, physically, emotionally and financially exhausted.
We talk to Susan and used to see our grandson before the pandemic hit.
We have not spoken to Paul since before the pandemic and, sadly, don’t see him being in our lives in the future. We have told him that he is now on his own in his life.
I wish there was some way to help him but no one seems to know what to do with him unless he does something violent to himself or someone else.
Is jail the only option?
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