During the fifth grade when Samantha was 10 years old, she was bullied by a male classmate. She remembers walking through the halls of her elementary school and hearing the bully call out these words:
“Why are you on this earth? You don’t deserve to be alive.”
The bullying followed her every day.
“I didn’t want to go to school because I knew he would be there. I was afraid,” says Samantha, now 12.
Weeks into the school year, the harassment and intimidation escalated and turned physical.
“It was usually mental [abuse], but at one point in fifth grade the bully came up to me, and he punched me on the back,” says Samantha quietly. This was the breaking point.
“I had enough,” says Samantha’s mother Karen. “The verbal and physical abuse needed to stop.” …
Diba Jalalzadeh, now 12, paces energetically around the waiting room. She has been coming to Boston Children’s Hospital since she was a baby. Today she is seeing her developmental medicine specialist, Dr. Carolyn Bridgemohan.
But she’s just one of the many specialists Diba sees at Children’s.“We touch on many departments,” says Monir, Diba’s mother.
Diba was diagnosed with Crouzon syndrome when she was 10 months old. She has had several surgeries to manage the effects of her craniofacial syndrome on her skull, eye muscles, tonsils and adenoids. She currently wears a brace on her chest to counter kyphosis (her shoulders’ tendency to cave in).
Though she’s never gotten really sick, Diba is a complex patient. Unrelated to her syndrome, she also meets criteria for autism spectrum disorder, so procedures most kids will put up with can potentially make her very anxious.
Blood pressure measurement? “She doesn’t enjoy that at all, but she tries to get through it.”
Sleep study? “She had a very hard time sleeping through the night but she managed to sleep a little,” says Monir. “If you ask her to do it again, she says, ‘No I can’t even try it!'”
Eye patching for an exam? “I won’t do it.” (She finally agreed to it at the end of the visit.)
Even measuring Diba’s head circumference can be a challenge.
Starting at a new school after a cross-country move from California to Massachusetts isn’t easy for any eighth grader, but Madison wasn’t just any middle school student. She was diagnosed with autism at age 2.
“No one understood my autism, obsessive-compulsive disorder (OCD) or attention-deficit hyperactivity disorder (ADHD).” Madison says. “Kids would push me, steal my things, trip me in the hall, memorize my locker combination.”
Madison started feeling very negative.
After speaking with her mentor, she decided the kids in her class might be able to understand her better if they were more aware of her autism.
Jess, Madison’s mentor, gave her courage and a voice. “She changed me forever. She was always there for me and she always supported me.”
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