It’s been almost 14 years since Emily Hecht and Owings Mills-based psychologist Eve Band published “Autism Through a Sister’s Eyes: A Young Girl’s View of Her Brother’s Autism.” Nowadays, Hecht, who grew up in Pikesville, is a 23-year-old graduate student at Washington University in Indiana. Recently, she recalled what it was like for her as she began to sense that her brother, Daniel, wasn’t like her friends’ older siblings.
“I started to notice he was different,” she shared. “He liked different kinds of TV and movies, babyish stuff, and he was two years older than me. I got embarrassed by his expressions and mannerisms because they weren’t age appropriate. So my parents took me to see Dr. Band to talk about it.”
The Hechts are far from alone. While they sought help from a private clinician, the 2010 Greater Baltimore Jewish Community Study found that 54 percent of those surveyed had sought assistance from a Jewish community agency for a family member with a physical or developmental disability, 50 percent for a child with a learning disability and 30 percent for treatment of an emotional problem such as depression or anxiety.
The study did not address the issue of siblings of children with special needs, but anecdotally at least, even with organizations that offer programming catering to the whole family, siblings can easily get short shrift when so much attention is paid to patients coping with a host of conditions.
When Emily came to her office, Band wanted to recommend a book for siblings of children with special needs, but to her surprise she found that little had been written on the topic.
“So we decided I would write my feelings and thoughts as a therapeutic exercise,” related Hecht, “and after a while, Dr. Band said, ‘We really have something here. It could be helpful not just for you, but for other kids too.’ “
As it turns out, Band treats many siblings of children with special needs.
“There are lots of emotional issues that are challenging, and it’s important for them to h ave a voice,” said the psychologist. “I appreciate that more and more.”
Stacy Israel, special needs coordinator for the Jewish Community Center of Greater Baltimore, has personal experience with the phenomenon. She grew up with three siblings with, as she likes to say, “varying abilities.” Like Band, Israel believes that it is important that siblings of children with special needs have opportunities to express their feelings.
“My message to siblings is, ‘Don’t be afraid of your feelings,’ “ she explained. “In some situations, having a sibling with varying abilities can be confusing or embarrassing. Your feelings may swing back and forth between embarrassment and protectiveness. Realize that this is normal, and don’t feel guilty.”
Parents, said Band, need to do their part by listening to their child’s feelings of resentment, fear and pain even when they are hard to hear. At the same time, they need to be attuned to what their children may not be saying but may be feeling.
“Young children need to know they will be taken care of — that they are safe. And some children may be afraid the disability is contagious,” said Band, stressing that parents should avoid letting siblings take on caretaking roles and shouldn’t expect perfect behavior.
Talking to children about a sibling’s special needs, continued Band, can be fraught with challenges. There’s the child’s own age and development level to contend with, as well as the nature of the sibling’s needs. Some children might want to know why a brother or a sister does particular things, while others might have known for some time that “their sibling is different,” she said.
That was the case for Evan and Drew Taubenfeld.
When their sister was about 2 or 3 years old “and I was about 10, she needed all these surgeries,” related Evan Taubenfeld, 30. “They had nothing to do with her autism, but as a kid, it kind of all mixes together in your mind. After that, it seemed like something was always wrong.
“My parents intuitively knew something wasn’t right, but this was before everyone was aware of autism,” he continued. “I watched my parents being worried, and I just wanted my sister to be happy and healthy. We started going to see all these specialists. It would be kind of like group therapy, but we wouldn’t talk about anything; we just were supposed to play with Annie in front of these people.”
Their mother, Ami Taubenfeld, is the cofounder and executive director of Itineris, a program for adults with autism. She talks with her sons about this time in their lives often.
“Annie was misdiagnosed for a long time, so my husband and I were very much consumed with our research,” said Taubenfeld. “But at the same time, we were both working and the boys were in middle school. They had homework and baseball games. It was very stressful.
“Annie has a pleasant personality, but she didn’t have language [skills] until she was 5 or 6, so it was hard for her to tell us what she needed,” added the mother.
Even though Taubenfeld and her husband, Mark Taubenfeld, tried to shelter their sons from their daughter’s condition, event-ually the boys “felt strongly that this was a family issue,” she said. “And they never wanted to treat Annie like she was special. They just treated her like one of the team.”
Taubenfeld sometimes asks her sons if they had an “awful” childhood, but, she said, “they always say they had the best childhood ever.”
To be sure, things aren’t always so easy for other families. Therapists, counselors and psychologists point out that much hinges on a child’s particular conditions and a family’s specific situation.
For one Baltimore family, whose members chose to remain anonymous given the nature of their experiences, rarely is there a reprieve from the crises that are symptomatic of their son’s mental illness. His 11-year-old sister is naturally affected by the constant upheaval.
At an early age, the family’s older child, now 19, transgender and living as a woman, was diagnosed with Asperger syndrome. The child has since carried multiple diagnoses, the most recent of which is borderline personality disorder.
The child’s mother remembered the time several years ago when she sat down her younger daughter to explain that her brother “had some problems.”