From the parents: Raising FAS kids

Cindy Bosley, mother of two adopted children with FASD in Anoka, Minnesota.

The girls -- Caitlyn and her little sister Kylee -- are really good with hands-on stuff. But putting it into written form -- they don't do it.

Teachers don't see this as a result of the girls' disability, so they treat it as naughty behavior. They don't know what the effects of fetal alcohol syndrome are, and the schools don't recognize it.

Caitlyn was at a summer program run by the school district, where there was a little boy who kept on picking on her. Caitlyn would come home and tell me that this boy was teasing her. I told her she just had to ignore him.

"Teachers don't see this as a result of the girls' disability, so they treat it as naughty behavior."

I also went to the staff and told them that Caitlyn has effects of fetal alcohol syndrome, that she can't take teasing, and it was in the best interest of everyone to keep Caitlyn and the boy separated. But the teasing continued. I went back to the staff, to ask them again to please separate the children.

By the end of week, I got a phone call saying that Caitlyn is on suspension for hitting the boy. Although I informed the staff of the problem, in the end, Caitlyn was penalized for something that could have been prevented.

The other day she said, "I wish us kids could take our birth parents to court and hold them responsible for the way I have to live my life."

She knows she has a disability and is different. People don't give the disability the regard it deserves.

I worry about the time when my daughters have to leave school or begin to take care of themselves. They have to have structure and routine.

Safety is an issue, because they lack cause-and-effect thinking. One day, I caught Caitlyn trying to touch the ceiling fan with her hand. They need complete supervision, even though they're now 13 and 11.

I want pregnant moms to know that if you drink, you give your child a lifelong disability from which the child will never recover. Your child will struggle for the rest of his or her life being different, and will have a hard time with education and life skills. There is no reversing this decision.

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Jeanette Lang, former director of programs at the Fetal Alcohol Diagnostic Program in Duluth, Minnesota.

For eight years, I ran a program for diagnosing children with FASD. This is a very complicated task because you're dealing with brain damage, which is invisible.

You need an interdisciplinary team to do this, and consistency is important because any number of things could be wrong with a child with FASD. What made me most passionate about my work was that, at the time I started, the diagnostics were from an academic perspective.

No one stepped back and asked, "How do we talk to families in a way that makes sense to them, that helps them take practical action, and avoids creating "throwaway" kids?"

I worked with a kid whose mom died from alcoholism. The girl was 11 or 12, living with a single aunt. She was doing well in school. But she had no sense of hunger and no sense of pain. She didn't eat. The adoptive mom had no idea what was going on -- she was worried that she was causing the problem.

After we explained to the girl's aunt and her teacher that the she wasn't eating because of damage to the region of her brain responsible for these functions, we got her on a feeding schedule in school. After this, she got her weight up. It was a remarkable success. This was about four years ago. She's now performing beautifully.

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Joline Gitis, mother of Erica, a young woman with FAS. Minneapolis.

Erica came to live with us as a foster child when she was 4. We knew her mother drank during pregnancy.

But in 1984, scientific knowledge of the disease was limited and popular knowledge was virtually non-existent. When Erica was born, FAS was ruled out because she had a normal birth weight. She wasn't diagnosed with FAS until later.

So we attributed a lot of her problems to her unstable home life. She had been in about 12 foster care homes before we took her in. She was always a borderline case on various diagnostic tests, (so) without knowing what we were dealing with, we just made a series of lucky guesses.

We provided her with good day care and she learned things there. When she started first grade she could already read. We then enrolled her into a school with lots of structure, small classes, and personal attention. It was exactly the type of environment Erica needed.

She thrived, although her learning difficulties were recognized. I gave all of Erica's teachers a book titled, "Fantastic Anton Succeeds," which describes the experiences of actual families that have a member with FAS.

It was always a matter of trying to educate the educators on the nature of the problem, and work with them to help her retrieve the information they would give her in class.

We taught Erica how to advocate for herself, and talked with her about the nature of her disability. When we had a name for it, we called it by its name.

"It's incredibly frustrating to raise a child with FAS, but it is definitely not hopeless."

We told her, "Don't let the teachers tell you you're not trying. We know you're trying. Tell them you have to sit in the front row. Ask them for extra time, and for oral examinations instead of written ones."

One of the hallmarks of the disability is the inability to generalize from a particular experience, or take a general idea and come up with a particular example. But our education system is based on this type of thinking. Erica would look at the general rule, and then the example, and she couldn't connect the two.

She would get frustrated sometimes when she would see her peers glide through school while it was so hard for her. It was heartbreaking. But she toughed it out.

It took her nine years to graduate from college. I told her that if she could get through college, she'll be a pro at life. She's acquired so many adaptive skills. She now works and lives independently in Washington D.C.

She's more focused and self-sufficient than a lot of other 27-year-olds who are trying to figure out their lives. I know she's turned a corner. She said to me recently, "If I can find my way around Washington D.C., I can find my way around everywhere."

It was the first time she enunciated a connection between a specific experience to a generalized situation. It's realizations like this that make me want to say to people, don't give up on these kids.

It's incredibly frustrating to raise a child with FAS, but it is definitely not hopeless."

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