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.
As Emmett continued to regress, our team grew. We acquired the brilliant neurologist, Dr. Sarah Spence. Sarah gave us hope, encouraged us to believe the regression would end and Emmett would progress. She shared a painful truth and pivotal moment for me: progress may not be the straight line we were accustomed to. We desperately needed to hear that.
Sarah figuratively held my hand through night wakings and middle-of-the-night scream-fests. Yes, she held Emmett’s hand too. Sarah shared (and continues to share) ideas, strategies and suggestions. She also listened to my craziest therapy queries and gave me insight, articles to read and valuable perspective.
Emmett’s team continued to grow. I met Dr. Howard Shane, director of the Autism Language Program at Boston Children’s at an Applied Behavior Analysis (ABA) conference. Upon meeting Emmett, Howard Shane engaged my son in a way only people who had worked with him for months were able to, and assured me my child would eventually be communicating — it wasn’t an issue of “if,” simply “when.” Emmett and Dr. Shane developed a unique dynamic, and we look forward to follow-up appointments, sharing progress and creating new goals.
When Emmett needed dental work, we found Kristen Diezel, the hospital’s autism child life specialist, who saved the day by easing us into the dental experience with stories and a token board. Kristin helps so many families with children on the spectrum. Whether it’s providing an iPad that never stops working, something that lights up or a simple Mylar balloon reward, Kristen makes it happen. The social “go to” woman and reinforcer of all things positive at Boston Children’s, she is a gem of a human. Emmett’s dentist, Dr. Neeta Chandwani, is also extraordinary. She allowed my son the time and the ability to explore her equipment before his visit, which he loved so much I am certain our next visit will be completely successful.
With autism, comorbidities are a part of life, and Emmett has dealt with his share of gastrointestinal (GI) issues and eye problems. The two final specialists on our team have helped him to continue to progress in these areas. Dr. Lois Smith is the most patient diagnostician and eye doctor, totally tolerant of Emmett exploring her office and chair and enticing him with letters to read on the screen. She made it all about the letters and Emmett totally loved it.
Finally, our latest addition to Emmett’s team is Dr. Tim Buie, who is for Emmett the autism whisperer of GI. Dr. Buie suggested a unique approach to Emmett’s stomach discomfort that has created global improvement for Emmett, including in his speech.
We are blessed with the most incredibly supportive team of specialists, all autism whisperers in their respective fields. These remarkable humans go above and beyond each day. There is no place on earth we would rather be than here at Boston Children’s. We can’t move, EVER. We have created our very best, truly extraordinary team of doctors, and for our child, that is the optimal outcome.
This Autism Awareness Month do something empowering. Examine your child’s team, take time to remember you child’s superstar moments and all the doctors, specialists and care people who impact you and your autistic child and help you continue on this complex, often exhausting journey.
Dear team Emmett: We love you all. Thank you for everything you do!
About the blogger: Faith Dantowitz and her husband, Ron, are the parents of Lyla, 13, Milo, 11, and Emmett, 7. Their family is completed by Stellar, their service dog in training, and Berri, their loyal pup. They live a life of music, science and laughter in Brookline Village. Ron is the astronomer at Dexter-Southfield School and Faith volunteers as a parent leader in autism. Follow her podcast, “Live from the Spectrum.”
Learn more about the Autism Spectrum Center.