This is the second in a two-part blog series on Fetal Alcohol Syndrome. Click here to read part one on the prevention of and signs and symptoms of Fetal Alcohol Syndrome. For part two on parenting a child with Fetal Alcohol Syndrome, continue reading below.
Recently I had the opportunity to attend a daylong seminar on Fetal Alcohol Syndrome (FAS) put on by the Erie County Council for the Prevention of Alcohol and Substance Abuse(ECCPASA). Diane Malbin, MSW, was the head speaker at the conference.
If you are adopting a child with FAS or born at risk for FAS, it is important to shift from labeling your child’s behavior, to identifying the cause of your child’s behaviors. As (conference speaker, Diane)Malbin said, “What if it’s not a case of your child not wanting to do something, but not being able to?” As a parent you must be willing to ask, “What if there’s something else going on?”
Malbin spoke a great deal about changing your point of view when working with a child that may have FAS. Instead of thinking a child “WON’T do something” maybe this child “CAN’T do this activity.” Instead of thinking that this child “IS the problem,” maybe this child “HAS a problem.” If a child doesn’t want to work, maybe the child “HAS trouble starting.” If a child is acting immature, maybe the child “IS dysmature.” If the child doesn’t want to try, maybe the child is “TIRED of failing.” These are all examples that Malbin gave of not looking specifically at the behavior a child may be exhibiting, but asking “What if there’s something else going on?”
There were many parents of children with FAS in attendance at the conference, and several spoke about their efforts to get care for their children. Many spoke about the need to be relentless in their efforts, and how often times they need to do their own research on the symptoms and effects of FAS. Some parents even spoke about the times they’ve brought information to their children’s medical professionals to “teach their doctors” in order to get the necessary support for your child.
One parent told a story of how they have been to several medical professionals and their daughter has been on 13 different medications and has been given several diagnoses. They were frustrated because they had been to a therapist two weeks ago who told them to do one thing, and then went to a social worker the next week who told them to do the complete opposite. This is why all of the parents said that it is so important to find a doctor who is willing to listen and communicate with you.
Helen Weinstein is the Program Coordinator for the Erie County Council For the Prevention of Alcohol and Substance Abuse (ECCPASA). She was on the question and answer panel at the conference and said, “Parents are an integral part of their child’s team, not an invited guest.” Other panelists recommended keeping in constant contact with your children’s teachers and not waiting for parent-teacher-conferences or other meetings to express concern.
Malbin also recommended looking at where children with FAS are at developmentally and not chronologically. She also stressed that every person has their own normal, and to take pride and joy in the successes of the individual instead of comparing them to others.
For more information on Fetal Alcohol Syndrome you can contact Adoption STAR by email at info@adoptionstar.com or by phone at 1-866-691-3300. If you are in Erie Country, you can also contact ECCPASA by email at eccpasa@eccpasa.org or by phone at 716-831-9580.
Stay tuned to learn about an upcoming podcast on this very topic with ECCPASA Program Coordinator Helen Weinstein.