A massFAS family speaks on FASD, in the context of recent FASD prevalence research. Also, FASD prevention is highlighted. Check out this great news clip at www.boston25news.com!
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Thanks to Leslie Leff, LICSW, child clinician at the Cutchins Northampton Center for Children and Families, Andy Castillo of the Gazette wrote a great article on FASD in MA. Check it out at www.gazettenet.com! Now YOU can reach out to your local newspaper, and Enid will help.
“I work with children, primarily, who have experienced trauma,” Leff explained. “Kids come in, and it’s not that they don’t have an attachment (disorder). It’s not that they don’t have trauma. It’s that they also have this.”Leslie Leff, LICSW, as quoted in Castillo, “ I Wish I Could Help You, ” Daily Hampshire Gazette, 28 May 2019. https://www.gazettenet.com/Fetal-alcohol-spectrum-disorder-25766764
Check out the latest newspaper article about FASD in MA…thanks to Leslie Leff and parents for facilitating this!https://www.gazettenet.com/Fetal-alcohol-spectrum-disorder-25766764
My son is 24 years old. He has been in a specialized school or program since he was 9 years old. He has an FASD. We fought for him and he worked so hard throughout his school years…harder than most of us could imagine. He attended a therapeutic boarding school until he was 22 years old. But now he does not qualify for services. He can not access his IQ. He can not live independently. He meets 6 out of 7 of the functional limitations that are requirements for eligibility for DDS. He unfortunately does not have Autism. He has an FASD. The Autism Law is discriminatory. This state has one of the most restrictive definitions of Developmental Disabilities. He meets the Federal definition of Developmental Disability, but here in Massachusetts, he does not. If he has the same limitations, why can he not get the same help? The outlook for him is not good. He only needs some flexible supports to help him work and live. I am afraid for him.
Is he or his disability not important enough?
We adopted Shira from Russia when she was 1.3 years old without realizing that she had Fetal Alcohol Syndrome. She was only diagnosed properly at age 7 through the adoption clinic at the end of First Grade when the other kids were advancing with reading and math, and she was struggling with memory issues and executive functioning.
During those years she would have up to 10 meltdowns per day, every single day, kicking and screaming wildly as she dealt with the frustrations of trying to keep up with her peers and the demands of school. No one was familiar with FAS in our town of Sharon, and since most of the behavioral outbursts occurred at home with exhausting regularity, our family felt isolated as we dealt with issues alone.
We could not find a capable therapist to support us… Our pediatric doctor did not really grasp the severity of our daily life and how complicated it was to deal with a child who couldn’t add 2+2 or read a simple phrase at First Grade level. The teachers in pre-school, kindergarten and elementary school claimed they knew how to help but their lack of experience with FAS made them pompous but totally ineffective. We felt we had “autism envy” as they had all heard of that, but FAS was unknown.
We rushed around paying for social skills groups and private therapists but the lack of knowledge of the specific complexities of Shira’s behavior made each supposedly wise behaviorist a farce. Even the psychiatrist was useless just suggesting medication that made her hands shake but gave no additional help.
We ended up using our own wisdom and personal training to help our daughter advance by strengthening her strengths and supporting her weaknesses. We realized that she had a love of swimming and encouraged her to gain expertise in that, and today she is a strong member of the High School swim team which gives her a social network and a place to release her tensions. Shira loves animals and we have guided her in the direction of dog training which will be her future profession.
The only effective help we have received in her 18 years of life from public institutions has been the excellent vocational program at Sharon High School where she is encouraged to regularly work with animals, specifically at the Capron Zoo. This program has helped her to have a strong support network of teachers who finally understand her needs and can help her grow with their support.
From the fetal alcohol support group for parents that we belong to, we gather that Shira’s relative progress is quite rare in that the town of Sharon have finally grasped our intense need for services. Other towns have not been that helpful and we consider ourselves lucky, and the exception, to have the support of our High School that understands Shira’s complex case.
-Nitsan & Caroline Gaibel