FASD and Spirituality
© 2002 Teresa Kellerman
Spirituality is not a common topic in the field of Fetal Alcohol Syndrome (FAS). I first was made aware of the potential role spirituality might play in the successful intervention of Fetal Alcohol Spectrum Disorders (FASD) when I attended a training program for the government to become a trainer on the subject of FAS issues for the Tribal Drug Court programs in the US. There were several speakers who addressed this need as integral in the healing process, but that it is often forgotten or pushed aside as unimportant by agencies in the treatment and drug court system. When these other trainers talked about having Elders and religious leaders become mentors for the recovering person, I thought that this would be a great idea for young adults with FASD, sort of a substitute parent figure. The spirituality would be incorporated in that relationship.
I have included "spirituality" as one of the "things that work" in my presentations. For many who hear this, it is an "aha" experience because they had not thought of that before as a support strategy.
I am the adoptive parent of John, full FAS, now 25 years old. Since my own awakening on this topic, I have taken John back to church. Actually we joined a new church of a denomination I was not familiar with before, but one that I think is ideal for Christians with FASD - United Methodist Church - as they are very welcoming and inclusive. Our church has about 250 members attending the most popular service, the members are outgoing and friendly, and both pastors are supportive, loving, and Christ-like (rather than just Christian). They are learning more and more about FASD all the time. (Its impossible not to learn about it when spending any time with us!) I think I will be challenging this church to be more welcoming to families with younger kids with behavior problems that are usually not tolerated well in church congregations. I have a collection of horror stories from parents who have been rejected and even kicked out of churches (of different denominations) because of the children's behavior problems.
I think spirituality is important for both the individual and the family. The challenge of raising a child with FASD has been such a personal struggle for many parents, that they seem to lose their faith in God, or it is sorely tested. The social isolation is very painful, and the need for connection in the community is a great one, especially when family members and neighbors are not supportive. I think that spirituality could be part of the healing process for parents who are in deep grief (as most of us are) - grieving the loss of the dream (that our child will grow up to be independent, healthy, productive, on his own). Many parents are dragged down by fighting the system (often unsuccessfully), and it is common to struggle with depression or cynicism. Spiritual connection can help lift parents out of that dark place and religious community can provide a safe place to reach out for support.
Since John and I joined this church a year ago, John has made new friends (adults and kids) and was even asked to join the music group. He plays the conga drums, and occasionally plays the trap drums when the regular drummer is not there. John is valued and accepted by church members as a regular person. But of course, his meds are working, he has finally matured emotionally somewhat, and I am with him at all times. That's the only way it would work. The benefit for me is that I have new friends too, and we have activities that are not related to FAS - a new experience for me. John and I teach a bible class for first graders on Wednesday evenings, and this has been lots of fun. This has provided a chance for John to learn at a level that is comfortable for him, and he can get some extra religious education that he missed in his earlier years, and he is learning what Christian Community is about. And there are about 1,000 people who are getting a first hand education about what FAS is all about.
The one drawback is that spirituality is an abstract concept, something folks with FASD may have difficulty with. God is hard enough for us regular people to understand, probably impossible for us actually, but we strive for understanding, and that is part of the spiritual journey. I'm not sure of what John's idea of God is - except that he can give back to me what I have fed him - my own ideas, and ideas that he has heard in church. But what he REALLY believes and at what level is anybody's guess. Just because he cannot grasp spirituality at the same depth that you or I can does not mean that he cannot benefit from it. Also, John is very vulnerable, so he could be persuaded to believe in just about anything. I could pick a religion out of the phone book, and take him and teach him, and he would embrace it with open mind and heart. This is scary, because he could just as easily be drawn into a cult or gang. It wouldn't matter who would do the leading, if he thought they knew what they were talking about, he would follow.
There are several reasons that spirituality would be helpful for individuals with FASD, regardless of their level of understanding or ability to function, or their IQ. Here are a few benefits that I can think of:
Basis for seeking inner forgiveness of the birth mother.
Basis for accepting self as a good person, "child of God"
Good role models
Healthy social environment for nurturing friendships
Support available when problems occur
Inclusion into regular groups that are not focused on disabilities
Encouragement of healthy lifestyles and behaviors
As I read these reasons, I see that they are more related to the religious community than to spirituality itself. I think that if left to their own, most adults with FASD would not seek spiritual growth. But I think that if they are encouraged to find it and are given the opportunity with a mentor or family member, and become part of a church community, this could be a protective factor against the serious secondary disabilities, and could add a very positive dimension to the individual's life. I know one adult with FAE who has a very strong religious conviction that has been a great comfort to him in his stormy life journey.
I asked my son John one day if he ever prays, and he gave me a blank look. I asked him if he ever talks to God when he is alone, and he said, "Sometimes." So I really have no idea of his personal relationship with a God figure. Whatever it is, I know it is good enough, and his experience is a positive one, if only because mine is positive and it has rubbed of on him. If I were to quit taking him to church and stop talking about God with John, he would probably forget about this and not miss the spirituality. But he would miss the social interaction that he enjoys. When John moves into a group home, I will continue to take him with me for our twice a week church excursions. After I am gone, I don't know how this will change, but I hope that there will be enough community support to provide transportation and mentoring for this wonderful experience to continue for John.
Mennonite Central Committee FASD Site
FAS Community Resource Center