smorgan's picture
smorgan

Fetal Alcohol Spectrum Disorder

Hi,



My wife and I are having a special education issue involving  our daughter. We're looking for very specialized information and/or a very specialized referral. We live in the San Francisco Bay area.



Background:



Almost four years ago, we adopted a now ten year-old girl from Russia who it now has been diagnosed with Alcohol Related Neurodevelopmental Disorder (ARND), one of the Fetal Alcohol Spectrum Disorders (FASDs).



Note: Fetal Alcohol Syndrome (FAS) also is a FASD, but typically is easier to spot visually, as there usually are clear accompanying facial characteristics. Our daughter has only very minor facial "dysmorphisms" that are characteristic of fetal alcohol exposure. The conditions can be just as severe neurologically; the facial characteristics have more to do with when in the fetus's development his/her mother ingested alcohol than its neurological impact.



Our daughter has various neurological problems related to fetal alcohol exposures, but they aren't apparent to her (public school) teachers. Many cover the whole spectrum of language. For example, she can't grasp phonics. The school system teaches whole language, so they don't care about phonics. She doesn't get letter sounds; they say it's because she is a recent English speaker. Still, she doesn't understand what she does read--she can recite the facts, but doesn't "get" the meaning and can't predict what will happen next. She has no clue about higher levels of language such as pragmatics--she has no clue about body language, so can't grasp what is being said "without" being said. She therefore misses just about all social interactions, cannot make friends, and is considered a pariah.



Our daughter also has serious memory issues--visual and verbal. She cannot multiply because she cannot remember the multiplication table, so she adds repeatedly. She adds on her fingers. She can't divide at all.



She also has serious behavioral problems, though the most serious ones show up at home. At school, they simply tell us that she must have ADHD because she "can't sit still" (stay in her seat), has behavioral problems (she "annoys other children"), doesn't follow directions (she can't remember more than one step at a time). They blame us for poor parenting. [At home, she has a history of melting down and so is medicated.]



Worst of all, her teachers allow her to sleep for 90 minutes or so in class, and blame us for not giving her enough sleep--she gets 11 hours--or for overmedicating her. Yet, her psychiatrist assures us that the medication is not making her sleepy. She tells us that she sleeps because she is "not interested" in school.



Even given all this, the school district does not think that our daughter needs special education because--believe it or not--she does well in school.



Help!


We need to find an expert in special education for children with FASDs who can evaluate our daughter to determine whether she needs special education.



dukies4ever's picture
dukies4ever

I am a Special Education teacher, but I do not specialize in FASD.  Who diagnosed your daughter?  That physician should have appropriate data and documentation to show how the diagnosis came about.  The physician should also have recommendations for the child at home and for school.  The physician's school recommendations could provide some direction for the school.  This information should be shared with the school and kept in her school file.  As far as the school not helping her, is it a public school or private?  Does the school have a SPED program?  What is the school's criteria for qualifying for SPED (get specifics--percentages, IQ, grades, etc.)?  Start here and let me know how it goes!