When I first saw John, he looked not quite human, or not quite finished, and I guess he wasn't. Born at less than three pounds and one month early, John was only four pounds when I took him home from the hospital at 8 weeks of age. There were no baby clothes that would fit him, so in the few days I had to prepare for his homecoming I made him a little miniature outfit with booties and a hat. Until he grew a little (which seemed to happen very slowly), he was dressed in doll clothes and diapers that were cut in half and still too big for his teeny butt.
He came to me with a diagnosis of Fetal Alcohol Syndrome. At the time I thought, "Great - I can look it up in the medical library and figure out what he needs." But there was nothing in the medical books on prognosis or intervention. My frustration at the time was mellowed by the realization later that having a diagnosis at birth was not only a blessing, but almost unheard of.
I was one of those foster mothers who believe that "love is all you need." I took pride in taking special needs "failure to thrive" babies and helping them to grow and thrive in my boundless love. All he needs, I thought, is my loving attention and my wonderful nurturing. Wrong!
For the first year he cried constantly, did not want to be held or cuddled, did not respond favorably to being rocked and lullabyed. Every night, he cried, and I cried along with him, helpless to do anything to relieve his discomfort. As a compulsive nurturer, I was heartbroken to learn the only way this baby could get any nourishment was to be left alone in crib in a quiet, dimly lit room with his bottle propped. I just wanted to love this baby; he just wanted to be left alone.
During the early years, I struggled with getting him to eat, to gain weight, to sleep, to relax, to grow, to develop, to learn. I look at him now and wonder if this is the same kid. He gets into my favorite snacks all the time, and he would sleep until noon if I let him. As a happy-go-lucky adult, he shows no traces of the scrawny, screaming infant I was determined to save with my love. It was probably that determination that helped me find success with John. I have been called "tenacious as a bull dog" and I'm sure many people in the "system" will agree, as I was resolved to find solutions to the many problems that presented themselves over the years. I have been known to bark and snarl. And more than once I have been called the word that means "female dog."
Like most parents who are trying to raise kids with FAS disorders, I went through some heavy-duty grief. I'm not just talking about the trials and tribulations of parenting difficult kids. I'm talking about real grief, chronic grief that doesn't ever go away. There was lots of anger at the beginning, mostly at the birth mother. "How could she do this to an innocent baby?" Of course I came to learn that she was probably a victim as well - the profile of the typical mother of a child with FAS was introduced to alcohol at an early age, grew up in an alcoholic family, had a good chance of having been abused physically and/or sexually, and she might even have been alcohol affected herself. So my anger eventually took on different targets - the teachers who didn't know how to teach him, the doctors who didn't know how to treat him, the social workers and psychologists who didn't really understand him. And they all were ready to point their fingers at "poor parenting skills" as the rationale behind his difficult behavior problems. But I persisted in my tenacity, first to find the answers and then to share the solutions with anyone who was willing to listen (and many who were not so willing but listened anyway).
Part of my grief was a profound sadness that came over me when John was about 18. I signed up for yet another FAS conference, as this was my sustenance for information and inspiration to keep going. The focus of this particular conference was "Secondary Disabilities" - I had never heard of this. I was depressed because I had come to accept that John had permanent brain damage and I knew that no treatment or intervention would change that, and no matter what anybody did to him or for him, John would be sentenced to spend the rest of his life with all the primary features of FAS - short stature, mild mental retardation, and the need for constant supervision, probably for the rest of his life. At this conference, I learned more about the secondary disabilities that are associated with FAS disorders: mental health issues, expulsion from school, trouble with the law, sexually inappropriate behavior, alcohol addiction and drug abuse. It suddenly dawned on me that John had escaped the more serious aspects of these secondary disabilities. He had ADHD, but it had been treated successfully and was not really a problem. He has exhibited inappropriate sexual behaviors, but nothing that got him into trouble. He has, so far, escaped the potentially more serious outcomes of clinical depression, arrest and conviction, alcohol abuse, or unplanned parenthood. He had become a happy, healthy adult living a rather good quality of life. Gee, I guess I had done something right all these years. I am so proud of this, I decided to tell all the world! I put my seven secrets to success on the Internet and present workshops on my SCREAMS model of intervention strategies: Structure, Cues (John calls it "nagging"), Role models, Environment, Attitude, Medications, and Supervision. The good news is these really work. The bad news is they have to be in place every day for the rest of his life. It's a good thing I enjoy being a mother. I've been parenting this boy-man for 25 years now and probably will for a few more years, until he is ready to enter a residential placement - or perhaps when I am ready for him to enter a residential placement. But I've been so successful in helping John become a respectable and socially acceptable adult that I actually enjoy his company. I never, ever thought I would make a statement like that, but I mean it - he is one wonderful guy!
Someone recently asked me about the problem of loneliness, social isolation, not having a life. I had to honestly say this is a difficult aspect of FAS. I admitted to having no friends that I socialize with, except for all those other parents on the Internet who are in the same FAS boat, socially isolated and lonely indeed. Oh, then I realized they were talking about John! Friends? Not real friends, nobody who calls him up and says "How ya doin'?" or "Let's doing something together." But since he has never had a best friend, he really doesn't miss it. He is friends with everyone and perceives others as his friends and he is happy this way. He doesn't mope in his room wondering why nobody calls him. It's just not a problem for him. It is for me though. So I was overjoyed when he finally, at age 24, found a real friend, a best friend with whom he can talk for hours, someone who understands him and likes him and cherishes him. It is a friendship with a young lady who also has FAS, and they both have about the same mental and emotional development, and are very much alike. John lives in Arizona and his special friend lives in California, but they talk on the phone several times a week and get to visit in person every few months. The friendship is developing into a romance, a healthy male-female relationship that both families are nurturing within the confines of a healthy, protected environment. We don't know where this love-friendship will lead, but we are all open to the possibility that it could be the "real thing."
In my commitment to help John "get a life," it seems I have lost mine. I'm kidding, kind of. I live my life through attaining my goals: 1) helping John to reach his maximum potential of development as a healthy, happy adult; and 2) educating the world about FAS prevention and intervention so that more babies will be born healthy and those who are born with effects can achieve the same happiness and success that John has. I may not have many friends, but I do have a wonderful real family, as well as a fantastic Internet family. And in my "she dog" persistence, I will continue to share my wisdom and experience, and John's story (with his permission and encouragement), which can easily be found in my little corner of the World Wide Web at WWW.FASSTAR.COM.
While my persistence and tenacity have not wavered, I hope my image has changed somewhat from "she dog" to "mama bear" - I only want what is best for my child, and I have achieved that. So if you are a parent reading this and anyone calls you bitchy or overprotective, take pride in knowing you are a Good FAS Parent just doing what you need to do to keep your kid safe.