I attended an IEP meeting with my daughter’s Special Education team recently. For over an hour, I listened to her teachers report on her progress. Most of the teachers were apologetic; even with tutoring and extra support, my girl is still just short of passing most of her classes. By academic standards, she is failing. It’s not for lack of trying; she works very hard. It’s not her fault. Quite frankly, the fault rests with her mother.
When we adopted Lena at 6 years old, she was living in an orphanage in Kazakhstan and had already been labeled by the caregivers as a willful, slow child. Lena is almost 14 now. She’s come a long way from the stubborn, withdrawn little girl we brought home… but she still believes in her heart of hearts that she is stupid and worthless and that her fate is somehow her fault. Nothing could be further from the truth.
Lena’s birth mother was only 17 when my girl was born, just a child herself but already an alcoholic. Due to her mother’s drinking, Lena was exposed to alcohol prenatally, resulting in Fetal Alcohol Spectrum Disorder (FASD). FASD can include a host of permanent physical, mental, behavioral, or learning disabilities.
Lena is actually fortunate; her manifestation of FASD is relatively mild. She has no physical disabilities, and her behavior is well-regulated. She’s a talented athlete with many physical gifts. She has a sweet disposition and a sunny personality. She is incredibly determined when faced with a challenge– and that’s fortunate, given the many challenges she confronts at school. Lena struggles with impaired short term memory, poor impulse control, and significant learning deficits. Working memory is her toughest hurdle; for example, a new math concept that her siblings will retain after 5-10 repetitions will take Lena 50-100 repetitions. It’s not surprising that she has low self-esteem; she is painfully aware of the fact that “my brain doesn’t work like the other kids in my class.”
I’ve been Lena’s mom for 7 years now; I’ve watched her struggles and her successes. Based on her orphanage records and diagnostic tests of her cognitive abilities, I wondered if she would ever learn to read, tell time, or master basic arithmetic… but she did. Even though she was delayed in her native language of Russian, I watched her become fluent in English in less than a year.
The orphanage caregivers were right about one thing; Lena is willful. I’ve seen her overcome countless obstacles by sheer grit. She is also courageous. In spite of the challenges she faces, even in spite of her deepest fears, she is beginning to believe in herself, refusing to allow FASD to define her. For any child with FASD, the road to an education is long and often painful. But no matter what their grades say, children afflicted with FASD aren’t the ones who have failed.
