This is Lena’s story of faith, perseverance, and optimism in the face of a disability. Although Lena was diagnosed with Fetal Alcohol Syndrome (FAS) as a small child, the absence of sufficient knowledge about FAS and ineffective communication on behalf of her family and healthcare system hindered Lena from understanding her disability until adulthood. It was at 26 years of age, after the suggestions of a social worker that Lena finally came to understand her disability. Now as an adult, Lena shares her journey of living with FAS and inspires true feeling of goodness.
Lena was born with intellectual and developmental disabilities, including a clubfoot, malformations of her fingers, and congenital heart problems that needed several surgeries. Lena was born with these lifelong damages to her body and brain because her mother drank while she was pregnant. When Lena was one and a half years old, she was taken from her mother and was placed in the foster care system where she would live until her 21st birthday. Contrary to how some would respond in the face of Lena’s challenges, Lena’s experiences perpetuated her spirit of happiness.
Throughout her early development and throughout grade school, Lena had a normal IQ and went to school, but had larger problems with learning and attention. Not only did Lena struggle with certain aspects of academia, but she also ran into social and emotional issues stemming from difficulties with social life. She felt like an outsider, didn’t understand social cues, couldn’t make friends, and consistently felt like an outsider. She was often teased and bullied, lending to feelings of frustration, sadness, and depression. These internalized feelings manifested themselves into many years of self-harming behaviors, including anorexia and bulimia. In spite of the academic, social, and emotional troubles Lena experienced in school, she persevered through the educational system with the help of a few teachers. She graduated as a nursing assistant.
Lena had several attempts at a job as an adult, including a quick stint as an au pair and four years as a nursing assistant at a nursing home, but nothing ever resulted in long-term job satisfaction and success. Her work mates had too high of expectations and Lena often felt like she could not live up to their expectations or relate to them. Even if she did understand the tasks at hand, Lena would react too slowly, couldn’t keep attention, and felt like she was constantly forgetting and messing things up. Lena still struggles relating to people and finds that sometimes people can be uncomfortable around her. Her social skills have led her to troublesome situations and relationships, including emotional and physical victimization. She finds it hard to be a good judge of character and feels naïve at times. Lena says ‘I want to believe that all people are good, but they are not’.
As a single mother with FAS, parenting can be a challenge, but Lena says joy outweighs all the rest. Her nine year old son, Johannes, understands that his mother has FAS because Lena reads him childrens books about the disability. Lena says that being a single parent is not easy for anyone and to be a single parent when you have FAS is tough. For example, helping her son with his homework is difficult. Even if she understands what he is supposed to do, she cannot explain it to him. A growing boy also needs parenting and limits. It’s hard for her to set the right limits – and to stick to them. To manage as a single parent with FAS, Lena is in need of extra help. She goes to parent education courses, which teach her how to cope and set limits. To organize herself, Lena uses step by step pictures to sequence her schedule. The parenting classes and this unique organizational method bring relief to her.
To center herself, Lena writes poetry and pulls from the strength of God and the support of her church. She converted to Catholicism and has been on a pilgrim journey to Medjugorje, Bosnia twice. Amidst her challenges living with FAS, Lena’s life is joyous. She loves people and animals, and when her young son is in school on a more consistent basis, Lena would like to spend time outside, working with animals. Lena currently serves as a support person for people with disabilities for an online/postal Christian support group. Lena says that she likes to cook, and like most things in her life, tries to keep it simple. She is a self proclaimed social, happy, smiling person. Lena emphasizes her ability to laugh at herself and exclaims that her life is not full of many failures! She has managed to overcome many challenges in her life. She is a fighter.
Lena says ‘These journeys have changed me very much and have given me the joy of life! Thank you for listening and God bless you all!’