It’s Autism Awareness Month, and as the mom of a significantly autistic child, Emmett, age 7, it’s a time to reflect on my child’s journey from non-verbal to moderately conversant, reading, doing simple math and enjoying so much of his life.
It started when Emmett was 2 ½, with Dr. Leonard Rappaport, a developmental pediatrician at Boston Children’s Hospital. I was extraordinarily fortunate to find “Dr. Lenny,” as my son calls him. He entered our lives and helped me transition from terrified, lost parent to empowered autism community member and peer leader. He gave me an autism vocabulary and believed in me as a parent before I was prepared to believe in myself. Dr. Rappaport truly gave me the greatest gift: a starting point for my child’s journey. He told me he believed in me and he believed in my son. Leonard Rappaport changed me as parent and as a human, as I learned to move forward and take a lead in guiding others. Helping other parents in the autism community is now my passion. …
April is Autism Awareness Month and you may have noticed there’s a lot in the news about autism. Several TV shows now feature lead characters with autism (Atypical, The Good Doctor and Big Bang Theory, among others). Even Sesame Street has a character, Julia, who has autism. More and more children — up to one out of 68 — are being diagnosed with autism. But what exactly is this condition, how does it affect children and what can you do to help? …
April is Autism Awareness Month and there is a lot in the news about autism. More and more children — up to one out of 68 — are diagnosed with autism. Sesame Street even has a new character, Julia, who has autism. But what exactly is this condition, how does it affect children and what can you do to help? …
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.