Shedding light on the ‘invisible disease’

Angela Klein’s pause before answering a question may seem a little socially awkward to those who don’t know about her disability.

Angela Klein contemplates her response to questions while talking about her battles with Fetal Alcohol Spectrum Disorder recently at the Penticton and District Community Resources Society office.

Angela Klein contemplates her response to questions while talking about her battles with Fetal Alcohol Spectrum Disorder recently at the Penticton and District Community Resources Society office.

Angela Klein’s pause before answering a question may seem a little socially awkward to those who don’t know about her disability.

The 29-year-old Penticton resident’s outward appearance of a smartly dressed, physically capable young woman conceals the invisible disease of Fetal Alcohol Spectrum Disorder. Her appearance often fools people, but simple tasks like staying on a time schedule prove difficult.

“We like to call these 10-second kids in a one-second world,” said Christine Lind, FASD key worker at the Penticton and District Community Resources Society.

Intellectual and developmental delays are just one of a long list of devastating long-lasting effects that alcohol can have on a fetus. Lind said many of those with the disability experience hardships including getting and maintaining a job, especially in a fast-paced environment. Klein has bucked that trend, holding down a full-time job by educating her supervisors about FASD and in turn how to make her the best employee she can be. The young woman will be speaking about her successes during International FASD Awareness Day on Thursday at the Okanagan College Theatre from 7 to 9 p.m.

“I think what is really important, in my eyes, is how Angela has persevered through many of the challenges that teens face today.  I think it is so important for parents out there and for kids that have this diagnosis to know they can have a regular life,” said Lind.

Many children with FASD have a high risk of addiction, arrest, homelessness, injury or early and tragic death. Knowing of these consequences led to one of the most difficult things Klein has had to do in her life.

“I had to set boundaries with someone that I love. I can’t be around him because he gets into quite a bit of trouble and is partying a lot,” said Klein.

The young woman’s tenacity to succeed coupled with the support she had in her later years from foster parents/caregivers (Penny and Rick Poitras) has helped her along the way. Ignorance, however, has put her at risk of becoming another statistic.

“Growing up I didn’t feel like I fit in,” said Klein. “Kids would always call me hurtful names like retard or loser. I would go home and ask my mom why do kids do this to me all the time and she would tell me they don’t understand and sometimes what they don’t understand scares them.”

But it wasn’t just the taunts from her peers. Klein said one of her earliest memories was the insensitivity of an adult.

“I had teachers that didn’t understand and didn’t believe my mom when she said FASD is what I have and I have difficulty learning. I remember one teacher — it is still with me to this day — she was trying to teach me the simple concept of one plus one and I just could not get it. She actually raised her hand out of frustration like she was going to hit me. That is what my birth mom used to do with me before we got taken away from her, and I automatically cowered. I went home in tears that day,” said Klein.

Lind said a diagnosis for the disability has only been around for about 30 years. Even 15 years ago there wasn’t a lot being done for kids with it. Today the Penticton and District Community Resources Society offers a FASD program at no fee to parents, caregivers or family of those diagnosed under the age of 19.

“We believe early diagnosis is really helpful so we can start working with parents, foster parents, grandparents to provide some healthy environments, and with the schools as well to educate teachers so they understand what is necessary in the classroom to help these kids be successful like Angela,” said Lind.

The FASD awareness event on Thursday is free to the public (donations will be accepted), and will include on the agenda a birth mother telling her story, doctors speaking on living with FASD and a panel of parents and professionals who will lead a discussion about various relationships for people living with FASD.

 

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