After the SCREAMS subside,
then SMILES can surface
Intervention Strategies for Parents
To Apply To Themselves
Medications: balancing the brain chemicals
Inspiration: finding the strength to go on
Letting Go: planning for future “independence”
External Brain: providing the safety net
Support: taking turns leaning on each other
Parents and siblings of children with disabilities endure more stress than other parents. Add to that the stress of misunderstandings about FAS, lack of recognition of the more invisible disorders, the denial about alcohol use/abuse, the high risk of secondary conditions, and we have doubled or tripled the amount of stress on families coping with FAS disorders. Some methods that are helpful for stress management include: eating properly, adequate sleep, daily exercise, avoiding alcohol, music, prayer, and a friend who is a good listener. For those who have piles of paper where chaos reigns, you might try logging on to www.FlyLady.Net. This web site taught me that not only is structure and routine good for my son with FAS, but it helps reduce my stress as well. Try it, you might like it. No time for YOU? Well, here's good way to destress - an easy one-minute self massage for the scalp, eyes, neck, and hands.
Studies show that chronic stress depletes the levels of serotonin produced by the brain. More and more mothers of children with FAS disorders are secretly admitting that they have begun taking anti-depressants (SSRI’s like Prozac, Zoloft, Paxil, or Celexa). This is not something to be ashamed of. It doesn’t mean that we can’t handle stress, it means that we have had more stress than a normal person is expected to manage and we need some extra help. This is especially true if the serotonin levels have been depleted and nature has lost its ability to maintain a healthy level of these neurotransmitters. Just as with FAS disorders, we need to recognize the physiological basis for our own distress. Helping to maintain a balance in the brain is the responsible, healthy thing to do, if that is what is necessary, and if meds are recommended by your doctor.
Years ago I was inspired by reading “The Broken Cord” by Michael Dorris. Later I was inspired by Diane Malbin’s books and studies published by Drs. Ann Streissguth and Edward Riley. I have been most inspired by articles written by other parents, like those found in the “Antone” books edited by Judith Kleinfeld. I am so inspired by email letters from parents that I often ask to share their words on my web page, so that other parents might also be inspired. Social isolation is common among our families, and few parents have the luxury of a local, viable parent support group. Sometimes the only connection we make with other parents is through the books we read or by joining an Internet support mail list. Just when I feel I am at my lowest point emotionally, I will get a message from a parent who helps me see my life and my child in a different perspective. It is easier for me to accept advice and suggestions from someone else who has walked this walk, and support from parents is usually more helpful than what I have received from the helping professionals.
As parents, we have the natural instinct to raise our children to become independent. Those of us who are familiar with the statistics, and who have heard countless stories of failed attempts to live in the outside world, understand that independence for kids with FAS disorders may not be a realistic dream to pursue. At least not independence as it is typically defined. But we are constantly told we must let go and allow them to learn from their consequences. Of course, we know that they are not capable of learning from their actions, and the consequences could be serious, even fatal. But still we have to let go some how, some time. Helping our child transition from living at home to living in the real world can work, but only if it is done in a way that minimizes the risk of the secondary conditions like getting arrested, becoming addicted to alcohol or other drugs, or beginning another generation of alcohol affected babies. We can only let go when there are adequate supports in place to help our children to succeed. And then we are only letting go to allow some other persons to hold on or to be there if they fall. Letting go of the fear that they won’t make it is a challenge that I have not won yet. But this mom seems to have learned the healthy way to let go. Read this: http://come-over.to/FAS/nolife.htm
I quote Susan Doctor often: “They will always need an external brain. Keywords are ‘always’ and ‘external.’ “ Our children have brain damage (whether you like the term or not, that’s what it is). Children who have vision impairment are given seeing eye dogs and Braille. Children who are hearing impaired are given hearing aids and signing interpreters. Children who have cerebral palsy or muscular dystrophy are given wheelchairs and ramps. The child who was affected by prenatal exposure to Thalidomide is given an artificial limb. There is no artificial brain that can be dispensed to my child. Therefore he needs to “borrow” my brain in order to control his impulses or make important decisions. If my brain is not available, he needs the brain of his brother or his job coach. When children who are disabled turn 18, we don’t take away the wheelchairs or the hearing aids and tell them they are expected to be independent without those devices. They need them the rest of their lives. Our children will need that “external brain” for the rest of their lives too.
We need support from our spouses, our family members, our friends. Those who find support close to home are lucky. We need support from the social services system, from church, from the community. But often the support we get is not the support we need. People mean well, but too often their advice adds to our stress. When someone suggests that we are too lenient or too strict or that we should take a parenting class, it just undermines our already fragile confidence in parenting these difficult children. We think we might be better off without this “support” that just magnifies our isolation. We wish someone would say, “What can I do to make things easier for you?”
I hope this SMILES article gives you ideas on reducing your stress and maintaining a healthy lifestyle so that you can survive the fallout of FAS parenting. Try the power of SMILES in another way. Just smile! It’s contagesous and is likely to help you feel better instantly. If you still cannot smile, then take a trip to Fasaholics Anonymous: www.fasstar.com/FA .
© 2002 Teresa Kellerman
Updated February 14, 2003
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