Bow Wave: Fetal Alcohol Syndrome Forever By Delinda McCann
This summer, five former members of the staff of the Fetal Alcohol Syndrome Family Resource Institute met for some fun in the sun at the ocean. Mostly, we talked and laughed and got caught up on what each of us is doing in retirement.
Getting caught up with each other’s lives included sharing what our adult children are doing with their lives. Our children are somewhat unique in that we have five that cluster around the same age but have widely different abilities. These five individuals represent the oldest consistently studied group of people with FASD outside of the first seven people to be diagnosed. Much of what we know about FASD and the core disability behaviors related to the disability came from looking at these people and constructing studies to verify if we were seeing something universal to the disability. In a sense, they are the bow wave that directed much of our study.
Our method has been to look at these five who vary greatly in IQ and ability to function. When the person with the gifted IQ acts the same as the person with the lowest IQ we’ve been able to form a theory that this might be a behavior related to the disability. The next step has always been to go find a five hundred to a thousand other individuals to test our theory. This is how we came up with our list of core disability characteristics that everybody with the disability will have.
When we shared what was happening with our adult kids, we shared their successes first. Sounded good. Next, we shared their challenges, and that was when we saw a pattern.
I shared my concern over J’s challenges in reconnecting with her birth father. I thought I understood the source of the horror we’ve lived through the past eighteen months. I explained, “She writes me these horrible emails several times a day telling me that I’m not her real mom, and I’m just a caregiver, and she doesn’t want to see me again except when I take her shopping for new clothes next week.”
Jocie bounced in her chair and said, “Oh that’s just like my daughter. She tells me that she doesn’t want to see us, and I have done this or that wrong, and will we babysit so she and her hubby can go on a trip for their anniversary. Of course I love my grandchildren, and they can come anytime, but the verbal abuse is really hard on us.”
Ann said, “That sounds like my daughter. She tells me that I caused all her problems, and she would be fine if I’d just butt out of her life then, like you said, she asks me to babysit, and I’m like, huh.”
I thought about our daughters who are all turning forty as I clutched my computer where I’d saved all J’s emails.
We all hashed this behavior around a bit. The words Ann and Jocie’s daughters use to talk to their mothers are the same words my daughter sends in an email. Now, Ann’s daughter has a Masters of Social Work. She should not talk the same as my daughter on total disability, but she does.
I needed to get up and help myself to some chocolate at this point in our discussion. Once fortified with pure dark chocolate, my brain started forming connections and dredged up old memories of developmental psychology. I felt like the sun had suddenly come out from behind a cloud. I said, “The mixed message of I-don’t-want to-see-you-and-will-you-babysit coupled with the stylistic language sounds like a developmental stage. It sounds like they are trying to emotionally separate from us, but of course they still want us to do things with them.”
After we thought silently for several minutes. Jocie commented, “That’s possible.”
Ann speculated, “I wonder if this is unfinished adolescent work? They all had so many issues with FAS as adolescents, maybe they didn’t do the work they needed then.”
I speculated, “Or it could be an over-reaction to their shifting relationship with us as we have age issues and are retired and our roles are beginning to reverse to where they need to prepare to help us. That would be a normal task at age forty.”
After we discussed the common elements of our stories and refreshed our memories on how close these women are in age, Jocie concluded, “This is definitely an area that needs more study. Who wants to tell the researchers they need to take this on?”
Why is this important?
If this is indeed a characteristic of the disability, it is a demonstration of the lifelong challenges those with FASD face as they age.
It will lead to safety issues for those, like my daughter, who need lifelong support to manage money, manage health issues, and remember the rules to avoid rape.
It is a safety issue for the aging parents. This behavior is abusive. We came very close to severing all contact with our daughter for our own protection.
If we can define the behavior as a disability issue, our middle-aged daughters can deal with it as they have dealt with so many other hurdles and move on to more healthy relationships.
If we can define this behavior as a disability issue, younger women who follow our daughter’s path can be prepared before hand to face a mid-life struggle that is more about the disability than their perception of their amazing parents.
It is possible this is more an issue with broken bonding at an early age. If so, it is still important to define the issue for the same reasons we would want to know if it is an expected characteristic of the disability.
It is important because, the truth will set us free.
This summer, five former members of the staff of the Fetal Alcohol Syndrome Family Resource Institute met for some fun in the sun at the ocean. Mostly, we talked and laughed and got caught up on what each of us is doing in retirement.
Getting caught up with each other’s lives included sharing what our adult children are doing with their lives. Our children are somewhat unique in that we have five that cluster around the same age but have widely different abilities. These five individuals represent the oldest consistently studied group of people with FASD outside of the first seven people to be diagnosed. Much of what we know about FASD and the core disability behaviors related to the disability came from looking at these people and constructing studies to verify if we were seeing something universal to the disability. In a sense, they are the bow wave that directed much of our study.
Our method has been to look at these five who vary greatly in IQ and ability to function. When the person with the gifted IQ acts the same as the person with the lowest IQ we’ve been able to form a theory that this might be a behavior related to the disability. The next step has always been to go find a five hundred to a thousand other individuals to test our theory. This is how we came up with our list of core disability characteristics that everybody with the disability will have.
When we shared what was happening with our adult kids, we shared their successes first. Sounded good. Next, we shared their challenges, and that was when we saw a pattern.
I shared my concern over J’s challenges in reconnecting with her birth father. I thought I understood the source of the horror we’ve lived through the past eighteen months. I explained, “She writes me these horrible emails several times a day telling me that I’m not her real mom, and I’m just a caregiver, and she doesn’t want to see me again except when I take her shopping for new clothes next week.”
Jocie bounced in her chair and said, “Oh that’s just like my daughter. She tells me that she doesn’t want to see us, and I have done this or that wrong, and will we babysit so she and her hubby can go on a trip for their anniversary. Of course I love my grandchildren, and they can come anytime, but the verbal abuse is really hard on us.”
Ann said, “That sounds like my daughter. She tells me that I caused all her problems, and she would be fine if I’d just butt out of her life then, like you said, she asks me to babysit, and I’m like, huh.”
I thought about our daughters who are all turning forty as I clutched my computer where I’d saved all J’s emails.
We all hashed this behavior around a bit. The words Ann and Jocie’s daughters use to talk to their mothers are the same words my daughter sends in an email. Now, Ann’s daughter has a Masters of Social Work. She should not talk the same as my daughter on total disability, but she does.
I needed to get up and help myself to some chocolate at this point in our discussion. Once fortified with pure dark chocolate, my brain started forming connections and dredged up old memories of developmental psychology. I felt like the sun had suddenly come out from behind a cloud. I said, “The mixed message of I-don’t-want to-see-you-and-will-you-babysit coupled with the stylistic language sounds like a developmental stage. It sounds like they are trying to emotionally separate from us, but of course they still want us to do things with them.”
After we thought silently for several minutes. Jocie commented, “That’s possible.”
Ann speculated, “I wonder if this is unfinished adolescent work? They all had so many issues with FAS as adolescents, maybe they didn’t do the work they needed then.”
I speculated, “Or it could be an over-reaction to their shifting relationship with us as we have age issues and are retired and our roles are beginning to reverse to where they need to prepare to help us. That would be a normal task at age forty.”
After we discussed the common elements of our stories and refreshed our memories on how close these women are in age, Jocie concluded, “This is definitely an area that needs more study. Who wants to tell the researchers they need to take this on?”
Why is this important?
If this is indeed a characteristic of the disability, it is a demonstration of the lifelong challenges those with FASD face as they age.
It will lead to safety issues for those, like my daughter, who need lifelong support to manage money, manage health issues, and remember the rules to avoid rape.
It is a safety issue for the aging parents. This behavior is abusive. We came very close to severing all contact with our daughter for our own protection.
If we can define the behavior as a disability issue, our middle-aged daughters can deal with it as they have dealt with so many other hurdles and move on to more healthy relationships.
If we can define this behavior as a disability issue, younger women who follow our daughter’s path can be prepared before hand to face a mid-life struggle that is more about the disability than their perception of their amazing parents.
It is possible this is more an issue with broken bonding at an early age. If so, it is still important to define the issue for the same reasons we would want to know if it is an expected characteristic of the disability.
It is important because, the truth will set us free.
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