The Chronicle of Social Change concludes five-part series on Fetal Alcohol Spectrum Disorders (FASD) from Helen Ramaglia, an advocate for foster youth and a member of our Blogger Co-Op. Click here to read Part 1, here to read Part 2, here to read Part 3, and here to read Part 4.
In August 2008 an adorable, Hispanic toddler walked through our front door and into our family.
Although he was two years and eight months old, he was non-verbal, wore clothes sized for an 18-month-old, and looked to be very unhealthy. His skin color was ashen, it felt clammy to the touch, and he had quite a bit of bruising on his little body.
Adrian and his younger brother had been in many foster homes before coming to live with us, and had lived in foster care their entire lives. We were their seventh placement. Their five-year-old sister followed a week later. She had been living in a different foster home, and we were her twelfth placement.
I wondered why mere babies would have been moved so many times. Termination of Parental Rights (TPR) was scheduled for October, two months later, and that put us on the fast track to adoption.
Adrian’s tantrums were many; sometimes it felt like a new one erupted every minute of every day, all day long. His younger brother, Jimmy, just two years old, was born three months early. Jimmy’s suffered from a severe case of Respiratory Syntactical Virus and he was still suffering from breathing issues. Being the baby, Jimmy was the brunt of Adrian’s angry outbursts.
The fights lasted all day and typically ended with both boys screaming and crying. Adrian thrived on physical play and it escalated to hurtful play very quickly. It seemed as if Adrian lived in a different world; not all day long, but often. He seemed very depressed, and the possibilities of Autism or Bipolar Disorder crossed my mind on many occasions.
Although his DFCS (Department of Family & Children Services) report said he seemed very intelligent, it seemed as if he suffered from some degree of developmental delay. After the first week, I realized something was very wrong with our adorable little boy. I couldn’t put my finger on it, but I knew something wasn’t right.
We had studied their family histories before committing to adoption, and knew there was drug use, alcohol use and family mental health issues. But, the reports detailing our boys specifically led to no indication of any residual effects from the birth mother’s drug and alcohol use. But we were committed, unconditionally.
I attributed most of his behavior to being frustrated due to his non-verbal issues. He grunted and made hand gestures for what he wanted. I was pretty sure this little sibling group suffered from trauma due to their numerous moves and quality of care, and wondered if this might be part of the issue.
Adrian’s issues did not stop with behavior; he suffered medically as well. He wasn’t digesting his food and everything he ate went straight through his little body undigested. He had diarrhea and suffered from this ailment almost uncontrollably. I could tell something was very wrong and expressed extreme concern over and over to DFCS. They assured me that the boys were just “all boy” and I needed to be more patient with their situation.
I continued to cause waves and fight for the resources to bring calmness to our chaotic and often unbearable world. I was exhausted, sleep deprived and starting to suffer from depression. Adrian’s special needs were invisible from the outside, and the intense structure and loving discipline I had created for my special little boy was seen as controlling, and over-dominating.
I told DFCS I couldn’t handle anymore. They finally decided to bring in a crisis intervention team. We would be receiving in-home therapy once a week for three months. Our three months were quickly over, and our little family was still in a major state of crisis.
I felt overwhelmed and as if I was failing all three of them every day; I had no choice but to choose between. The foster mother who had Jasmine before us, had wanted to adopt her. So, with a heavy heart, we ended her adoption and allowed Jasmine’s prior foster mother to adopt her instead.
I continued to make waves until DFCS allowed us to take the boys to the Marcus Institute in Atlanta. The findings: Adrian was diagnosed with FAS (fetal alcohol syndrome) and non-verbal learning disorder, and Jimmy with FAE (Fetal Alcohol Exposure) and other unknown medical disorders.
Although Adrian showed significant learning delays, I believed some of that was due to his foster life and not receiving early learning intervention that most toddlers get in typical living environments.
Three years later, our difficult, unruly, frustrated and lost little boy is full of love, laughter and has an extreme desire to please. He has has made significant strides in learning based on his first evaluation. Adrian has an IEP (Individual Education Plan) in school and will always suffer greatly from the effects of fetal alcohol syndrome.
Today, I know that arming myself with the right information, education and tools, we can and will help guide Adrian to becoming the best can be. The struggles are numerous and the climb constant. But with the right tools and support, I’m optimistic we will prevail.
It is imperative that we educate the public about this debilitating, costly and preventable birth defect. Fetal Alcohol Syndrome is not acknowledged in our school system as a special needs classification, instead Adrian’s eligibility determination letter states he is eligible under “Other Health Impairment.”
Our teachers were not equipped with the proper techniques to teach Adrian. Therefore, I had to advocate heavily for his education and help arm our teachers with the correct tools, understanding and information he needs to succeed academically and behaviorally.
Adrian is currently participating in an FAS Study being conducted by Emory University to create teaching manuals to teach teachers how to educate children of FAS. In the book “Fetal Alcohol Spectrum Disorder:Management and Policy Perspectives of FASD” by by Edward P. Riley (Editor), Sterling Clarren (Editor), Joanne Weinberg (Editor), Egon Jonsson (Editor), it states “The distinctiveness-but also the potential-of students with FASD must be recognized and addressed in all educations systems and in all communities. Failure to do so will be at the cost, not merely of students with FASD and their families, but of contemporary society.”
The need for better understanding goes double for everyone working with our foster children and adopted children should be educated and informed. Adrian displayed many of the signs of FAS from birth. After receiving his diagnosis, I went back over his file and it was all there in black and white. My baby suffered because I was uninformed and uneducated on this unfortunate and prevalent birth defect.
When I questioned DFCS about his diagnosis and impending adoption, I was told FAS was not a qualifying diagnosis for special needs adoption. This causes a great deal of concern for thousands of children who quietly suffer and parents who struggle to care for children of FAS. Especially for children in the system who are searching for their forever families.
For further information and education about FAS/FASD please visit:
Helen Ramaglia is a foster alumni who became a foster/adoptive parent. She is the founder and Director of Fostering Superstars, a Congressional Award Winner for her work with foster children and is the author of “From Foster to Fabulous”. She is a popular speaker, trainer and advocate for foster children.
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