Marguerite Kelly's Family Almanac: A son with fetal alcohol spectrum disorder

Friday, November 27, 2009

Our 17-year-old son seems to have hit a dead end academically and his future is a great unknown.

His past, however, is not. He was born five weeks early to an alcoholic birth mother, he lived in a Russian orphanage for his first three years, and he has fetal alcohol syndrome. He also shows very poor judgment, so we have had to keep him quite sheltered.

Although he loves the Boy Scouts and thrives when he's outdoors, he struggled mightily throughout grade school and passed only with the help of many tutors. After that he went to two private high schools, only to be overwhelmed by the work even though the second school was geared for kids with learning disabilities. Somehow he couldn't keep up; he refused (or was unable) to do his homework and he lied to avoid reality.

We eventually took him out of school because he disrupted our entire family -- including his three younger brothers -- and his most recent neuropsych evaluation said that he needed hands-on education to learn a trade, but we live in an area where academic education is king. Where could he go to learn a trade if there is no trade school nearby?

What do you know about the Job Corps? And how does one find apprenticeships with decent people?

Academics may be king in your part of the country, but your boy doesn't live in that kingdom. And he probably never will, because he has fetal alcohol syndrome -- a sorry condition that is now called fetal alcohol spectrum disorder.

The symptoms of FAS vary by child, depending on how much alcohol their mothers drank when they were pregnant -- and when. Research tells us that alcohol affects a fetus immediately and powerfully, especially in the first trimester, and the more the mother drinks, the more a child is affected.

Since there is no cure for FAS, your son's symptoms will never go away but they should improve if he lives in a loving home, if his life is well-structured, if his world and his space are quiet and peaceful and if he follows the same simple routine every day.

When you give him those advantages, you'll also be accepting the limitations that FAS has imposed on your son's body, his mind and his behavior, and that's just what you must do. Your son will be -- and should be -- as proud of the GED he'll probably get one day as the boy next door will be when he graduates from Harvard.

It's your son's talents that really matter, however. Once you realize what he really likes to do, you'll know where his talents lie and then you can encourage him to build on the skills that these talents require. This will strengthen both his self-confidence and his self-esteem -- the two attributes that are most at risk in a child who has learning disabilities, impulsivity and other behavioral problems.

Since you know your son likes to be outdoors so much, you might see that he enrolls in a small, rural Job Corps camp that's geared to outdoor projects, or work for a landscaping company, as long as it doesn't use chemicals to control the weeds and the bugs. Your son already has FAS; he doesn't need any more shocks to his system.

You also might encourage him to volunteer as a tour guide at a national park for a few hours every week and if he likes that job and does it well, he could ask his boss for a paying job. If he likes to cook, suggest that he go to a culinary school; if he is good with his hands, you could offer to send him to a massage school. Or you could call your appliance repairer or your plumber and ask if your son might work as an unpaid intern. After six months or so, he should know enough to be hired.

You also need to talk regularly with other parents of FAS children. To find out who they are, contact the National Organization on Fetal Alcohol Syndrome at http://www.nofas.org or the Fetal Alcohol Syndrome Family Resource Institute at http://www.fetalalcoholsyndrome.org.

You'll also pick up some interesting information by reading "Fetal Alcohol Syndrome" by Ann Pytkowicz Streissguth, "Fantastic Antone Grows Up" by Judith Kleinfeld, "Broken Cord" by Michael Dorris and "FAS: A Parent's Guide to Caring for a Child with FAS" published by the Wake Forest Medical School, which can be downloaded free if you search for FAS at http://www.nlm.nih.gov/medlineplus.

Kelly is a freelance writer. Questions? Send them to advice@margueritekelly.com or to Box 15310, Washington, D.C. 20003.


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