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Surrounded by Support, but Completely Alone

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This article is part of our Summer 2020 Breaking Barriers. This installment focuses on parents of loved ones living with Fetal Alcohol Spectrum Disorder (FASD) coming to grips with the realities of this unexpected, difficult, lifelong disability that was unknown two generations ago. If you'd like to read more stories from this issue, please subscribe to Breaking Barriers. Editor’s note: Author’s name withheld upon request; all names have been changed.

Anna spent the first year of her life in an incubator at Toronto Hospital for Sick Children, with a tracheostomy tube in her throat. Her birth mother drank during her pregnancy, and then surrendered her parental rights to the underweight and sickly baby born to her. 

Kate knew she was in for a challenge when she learned this little girl weighed only 11 pounds at 18 months of age. Kate and her husband had plans to have a large family, so she felt that being loved and supported by many people would help Anna thrive. 

The hospital arranged the placement, and Anna joined the loving and supportive family. It would have been hard to find a better home. Both parents were social service providers, and their children had a happy roster of family, school, and church activities. Even though Anna was the lone black child in a white  neighborhood, she was accepted. She was one of the family. 

Sadly, Anna’s growth and development were not typical. From the start, her sucking impulse was weak, and she resisted cuddling and affection. As years passed, she seemed unwilling or unable to accept boundaries and resisted correction at every turn. Academics were a struggle, and even special education  couldn’t help with trustworthiness and reliability. 

After years of frustration and self-blame, the family took their 13-year-old daughter to a specialist who readily detected the prenatal alcohol damage. This was an explanation for Anna’s deficits in self-control, logic, and reasoning. Unfortunately, at that time, not much help was available for children with FASD. Seven years later, much to the family’s surprise, a car drove up to the house and a new “friend” of Anna’s helped the petite 21-year-old pack up and leave their home to live with him in a large city. 

Sometime later, Anna’s tracheostomy had to be repaired on an emergency basis, rendering her unable to speak. She has never been able to hold a job and will likely collect social assistance for the rest of her life. Between her initial and secondary tracheostomies, her lengthy hospitalizations, special  educational services, her own support, and that of her two fatherless children, the toll on society has been great. 

For Kate’s family, feelings of frustration remain. Every skill in their social services toolbox could not address the damage born in their baby girl.

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