I’ll never forget the first time I spoke my most shameful secret aloud to a stranger. It was March of 2003. I stood alone in my kitchen in NJ on the phone to a woman in Washington State. Palms sweating, heart pounding, voice cracking, I said “My son has Fetal Alcohol Syndrome.” Imagine my surprise when she calmly answered, “So does mine” and asked about my family. I thought there would be blame and judgments; she made it clear that blame is not useful to anyone.
The question about my family was not easy to answer. I’d had three alcohol-exposed pregnancies. Stephen was born in 1988 after a planned pregnancy. I was a heavy drinker who still had some control. I could remember a few drinking episodes over the course of the pregnancy. Michael was born in 1991 when I was an unidentified alcoholic. Christina was born in 1994; I had some sober time, but had relapsed and experienced DTs. My children have a spectrum of prenatal alcohol exposure and effects. My husband Paul has had an amazing journey of his own throughout our eventful marriage.
I had an instant of panic at the family question, wondering if I had to tell her anything about myself. I am third of seven living siblings with an alcoholic father; all of us were born within ten years. I had a number of traumas growing up that familiarized me early with alcohol and pleasing men sexually. By the time I was thirteen, I was adept at stealing or prostituting myself for alcohol (and the violence that went with that practice). In the meantime, I attended high school, participated in student council, National Honor Society, school paper, a part-time job. I associated with people who drank like I did, so my behavior seemed normal. I noticed a vague sense of emptiness and bargained with the universe for external accomplishments that would replace alcohol- college, a full time job, medical school, internship, residency, a husband, a home, a medical practice. All of those things happened. I cut down my drinking as needed and continued to feel like a fraud in everything I accomplished.
Paul’s and my family journey started with a planned pregnancy with Stephen. I stopped drinking with an effort some refer to as “white-knuckling”- a description of tremendous effort and attention with no support and variable success. I can remember a few drinking episodes through the course of the pregnancy, but Stephen had no apparent problems. I was depressed and felt utterly unable to care for him; I returned to work and occasional drinking which quickly escalated. I was into my first trimester with Michael by the time I realized I was pregnant. I thought I could stop as easily as I had with my first pregnancy, but alcohol had taken hold of my mind. I had severe depression, suicidal thinking, refractory vomiting, unstable appetite and weight during this pregnancy. I stopped for the 2nd trimester, but resumed episodic drinking later in the pregnancy. Michael and I both had withdrawal and he had feeding problems and failure to thrive from the start. My family intervened and I got professional help with a psychiatrist and a few 12 step meetings. In 1993 I had medical catastrophe, my first inpatient addiction treatment, and a diagnosis of inflammatory cirrhosis. I was able to stay sober for almost a year and start dealing with the wreckage and shame caused by my drinking. Stephen was developing normally and attending regular preschool. Michael was evaluated and started Early Intervention. I progressed in my medical career with professional monitoring. Multiple factors led to my final relapse; I binged over the period of a week and experienced DTs when I tried to stop on my own. I went from detox to long term halfway house treatment. Here I found out that I was well into my first trimester of a high risk pregnancy with Christina. In women’s community I finally dealt with undiagnosed and untreated physical, emotional and sexual trauma. I learned that I wasn’t psychotic as I’d feared; the flashbacks that heralded each pregnancy and consequent relapse were triggered by hormonal sweeps. I talked about the depth of my shame at drinking during pregnancy and parenting, and the damage that had caused. I disclosed my shame and fear at having cirrhosis, and how it interferes with daily activities. I learned how to live day by day without drinking. I was discharged 71/2 months pregnant with a solid recovery and medical program, including a psychotherapist, addiction medicine, 12 step meetings and sponsor, hepatologist, internist, an educated husband and obstetrician. After Christina was delivered, I bled to death and revived. When the children were 6, 3, and 4 months old, I was diagnosed with kidney cancer and had surgery. After three years of trying, I was finally able to settle into permanent and useful sobriety.
We have gradually figured out what intensive, daily supports Michael needs over the years. He was continually evaluated, monitored, and supported through Early Intervention, Preschool Handicapped, Multiply-handicapped Kindergarten, and self-enclosed special education classes (after a failed mainstreaming attempts). He was classified eligible for special education and related services in the category Multiply Handicapped; he has mental retardation, and impaired vision, hearing, speech and communication. He was very speech delayed and had frequent ear, respiratory, and GI infections. He had multiple ENT and ophthalmologic procedures. He was consistently sociable, engaging, lovable, curious and inattentive as a boy. Any meds made him hyperactive and even aggressive. He was formally diagnosed with FAS at age 11 with information from multiple sources- developmental pediatrician, neuropsychologist, neurologist, occupational and speech therapists, learning consultant. He was also seen regularly for treatment by ENT, dentists, and an allergist. He was supported in Boy Scouts, soccer, Special Seals at the YMCA and religious education. He is highly successful at the Special Services School in our county; they accommodate him academically and provide support at his part- time job. He just turned 18 and has a relationship with a young woman at his school; naturally our most immediate concerns are about safe sex and contraception. At home and in the community, we continue to test what he can learn and what experiences he can tolerate on a daily basis. Any change in routine is a stress that must be prepared for; he seems even less flexible as an adolescent.
Prenatal alcohol exposure has affected Stephen very differently. Stephen grew up intelligent, athletic, sociable, very verbal and capable. He hated homework and his teachers reported that he was talking too much, not paying attention, not working to his potential. He struggled with organizing homework and projects. At age 11, he had his first suicidal thoughts, safety plan and psychotherapy. He began an enduring habit of cooking and skateboarding to help balance his mood. He had his parents and a strong-willed girlfriend to help organize his time, activities, and peer interactions; he was an honor student in his vocational high school. The unmanageability set in aggressively when he moved out to go to college. He was quickly in poor health, academically unsuccessful, depressed, and experimenting with drugs. Most of his jobs have been overwhelming and short-term. It became obvious that he struggled to organize many tasks, in school and out. His time and money skills are suboptimal. His decisions regarding activities and peers were inflexible. We finally had him evaluated at the FASD Diagnostic Center. His testing was affected by major mood disorders and wasn’t conclusive for alcohol effects, but demonstrated a number of challenges common to affected individuals. I struggled with a new shame and the realization that we were way behind in establishing what supports Stephen would need to be successful.
Christina had a brief, intense alcohol exposure in the first trimester. She has had some reading difficulty that seems to improve with age, attention, and home support. She is 14 years old and has outstanding academic, social, and athletic success. She has only been partially evaluated at the FASD Diagnostic Center by choice (hers).
Now you have an idea why I hesitate at a question about the family. Stephen, Mike, Christy and I have had multidimensional evaluations and interventions of varying intensity over many years. Mike and Christina take no meds; Stephen is on trial antidepressants. I’m not always aware of the daily time, energy, and planning that is needed until an objective observer points it out. Parenting our children is undoubtedly a much different journey for Paul than he could have expected. He is a successful Occupational Medicine physician with his own story. We both had medical education and clinical practice; knowledge isn’t enough to prevent FASDs. Alcohol use has to be assessed and treated as indicated.
Forgiveness is the gift that motivates my involvement in FASD education and prevention. Shame kept me secretive and drinking; self forgiveness in recovery has put that shame on a leash. Self- forgiveness may seem like a sudden thing, but it is a product of years of work in a recovery program that emphasizes forgiving and asking for forgiveness with others. Forgiveness is a healing process that has to be acknowledged and maintained. It requires that harm be admitted and ongoing responsibility for damage be accepted. It has nothing to do with forgetting. Forgiveness has freed myself and my children of the pervasive shame so destructive to birth families. It has freed us to recover, be creative, have fun, and help others. It took Michael a few years of talking about his challenges to realize that I’d used alcohol during my pregnancy with him. I asked his forgiveness and he asked me first if I was really sorry. Then I told him I hoped he could forgive me someday and he said, “I don’t mind. I love you mommy.” I was gifted with the question, “If he can forgive you this, who are you to not forgive yourself?” After all the years of self recrimination and blame, I finally understood what self-forgiveness feels like. The rest of the family has been just as generous with forgiving me.
Stephen and Christina have their own stories in this chapter. I asked Michael if he had anything to say in this chapter about having FAS; he’s not really sure what all this is about. He just shrugs and says his classic line “Tell them I don’t really mind”. Michael doesn’t spend time and energy wishing to be someone he’s not. He has a straightforward approach to his routine, his day, his work and school duties, where Christina should go to high school, where I should work. He repeatedly reminds us all to go where we are loved. Thanks for your attention to a perspective on my family.
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