Staying Alive with the FASD Survival Plan
© 2004 Teresa Kellerman
Parents who are raising children with Fetal Alcohol Spectrum Disorders (FASD) often ask me what they should do to protect their children as they are growing into adulthood and what they can do to ensure their children are protected in the future. I have advised parents to educate themselves, their community, all the providers and professionals in their children’s lives, and to educate the children themselves about the nature of their FASD so that all involved have a realistic perspective, reasonable expectations to prevent the serious secondary disabilities later, like substance abuse, promiscuity, trouble with the law, depression, and suicide. Some children will qualify for services in the disabilities system, some will qualify in the mental health system, and some will not qualify for any services at all. For those “lucky” enough to become eligible for services, more often than not those services are inadequate or inappropriate, and in some case the service systems place the adult children with FASD at risk because of lack of understanding or case overload. The evidence I have gathered through my interaction with hundreds of parents motivates me to advise adult children to stay at home as long as possible and for parents to provide home care for their children as long as they are able. I seriously advise parents to take care of their health so that they can live a long life and be available to care for and advocate on behalf of their children. This is easier said than done.
What I have observed is that parents of children with FASD over the years develop serious health problems, more than those seen in parents of non-disabled children. Recent research shows that the stress experienced by families raising children with a diagnosis of Fetal Alcohol Effects (FAE) is greater than that of families raising children with a diagnosis of Fetal Alcohol Syndrome (FAS), and that families raising children with suspected FAS or FAE suffer the greatest stress of all.
It is very easy, when raising a child with FASD, to become so wrapped up in the child’s needs and advocating for the child’s safety, health and welfare in the various systems to lose sight of the importance of taking care of one’s health. I therefore urge parents to pay particular attention to living a healthy lifestyle by following these four simple guidelines:
Food: maintain a prudent, balanced diet
Alcohol: drink in moderation, avoid excessive use
Smoking: quit now and/or avoid second hand smoke
De-stress: daily exercise, meditation/prayer, laughter, sharing/support, sleep well
Food: If you follow the Mediterranean diet or a “prudent” diet, you will optimize your health over the long term. The Mediterranean diet consists of lots of whole grains, fruits, nuts and vegetables. The “prudent” diet is balanced with 50%-60% carbohydrates, 15%-30% protein, and less than 30% total fat (Journal of the American Medical Association. September 22/29, 2004). Many parents of children with FASD tend to overeat, probably due to stress. What works for me is to follow the Weight-Watchers plan. I can eat a lot, lose or maintain my weight, and enjoy the camaraderie of a support group. I even get to eat a little bit of chocolate every day, which satisfies by sweet tooth and keeps be from overindulging in less healthy food.
Alcohol: What is “excessive use” of alcohol? We have been advised to “drink responsibly” but not too many people know what that means. The FDA nutritional guidelines advise us to limit our alcohol intake to just two drinks per day for a man and just one drink per day for a woman. And no alcohol at all for women who are pregnant, who might be pregnant, who could possibly get pregnant, or who are nursing. And no alcohol for people on prescription medications or those with addiction disorder. Alcohol is a risk factor for people who have high blood pressure, heart disease, diabetes, for those with family history of substance abuse and/or cancer. Women beware: even one drink a day can raise your risk of breast cancer (FDA 2000 Dietery Guidelines for Americans). The few health benefits touted by the media are significantly outweighed by all the risk factors of alcohol. Is it worth the risk? Not for me, it isn’t. I have observed that alcohol has done too much harm to people I love, especially my son who has FAS. Out of respect for him and as a precautionary factor to promote health role modeling, I decided years ago that my home would be an alcohol-free home, with no alcohol consumed, served or brought into my home.
Smoking: We have been educated adequately about the dangers of smoking and the risks of inhaling second-hand smoke. We have a smoke-free home and as a family we try to avoid social situations where smoking might occur. Not only is smoke unhealthy for our lungs, but smokers are unhealthy role models for our children. If you smoke, quit. If you live with a smoker, talk to your doctor and encourage the smoker to seek help in quitting.
De-stress: Minimizing the stress in your life is as important as the other health factors. Exercising for 15 minutes a day for 3-5 days a week can do wonders for depression, and will help boost metabolism. Begin each day with prayer or meditation, find something new to be grateful for each day, and look for the blessing behind the problems that inevitably will challenge you. Find the humor in difficult situations and laugh at yourself. It is so easy to take ourselves too seriously. Find a good friend or two who understand, and join a support group where you can share your burdens and joys. Get a good night’s sleep each night, so you can face each day with fresh energy and a clear mind. Do something fun, just for yourself, every day.
These FASD steps are simple, but not necessarily easy to implement. I have thought a lot about maintaining a healthy lifestyle, for myself and for my children, so that I can enjoy life as best I can, so I can be a healthy role model for my children, and so that I can be around for years to come to ensure my children get the love and quality care they deserve. I have made a commitment to a healthy lifestyle many times, and I have slipped many times. And I have started up again, and again. Over the years I am getting better, and although I am now in my late 50’s, I am in good health, and I intend to keep it this way. I have had health problems in the past, and perhaps you have or still struggle with health issues. But don’t give up. It’s never too late to start living well. You owe it to yourself, and to your children.
If you follow these guidelines, you can reduce your risk of death from any cause by 65%. Each of these four by themselves will reduce your risk by 20% to 35% (Journal of the American Medical Association. September 22/29, 2004).
I am committed to following the Staying Alive FASD Survival Plan. How about you?
FAS Community Resource Center