November 19, 2019

Special Needs Summer Reading with My Friends

It’s officially summer with long, light days to catch up on some reading. My favorite hobby since I was a child has always been reading and as a parent of a teen with special needs, I find that reading is the one of the few hobbies that works for me: books are portable, I can do it in very small spurts of time and best of all, reading can transport me far away from the unfocused clutter and logistics bumping around in my brain.

I used to enjoy science fiction and thrillers, and then became more of a literary fiction fan, or what my sister likes to describe as books populated with people “from dysfunctional families”. Since becoming a parent of a child (now older teen) with developmental disabilities, I often gravitate towards books with special needs themes. And I don’t have to look too far, because six friends in Los Angeles have written books about their own experiences with special needs, filling up a nice space on the bookshelf, and yes, if I’m honest, making me feel a bit of a slacker.

I strongly recommend reading all of them, with a special nod to Ido Kedar’s book, “Ido in Autismland” since it movingly captures the inner thoughts and feelings of a teenager with non-verbal Autism. It should really be required reading for any professional who will be working with children and adults on the Autism Spectrum Disorder.

One unifying thread of all six books is that the authors aren’t afraid to question authority and do things differently. Considering that the west has always been a place that welcomes re-invention, maybe this willingness to buck tradition isn’t so surprising for six LA-based writers, but it is quite remarkable that each family traveled down a very different path to reach a similar conclusion.

Hope for a Sea Change: A Search for Healing by Elizabeth Aquino (ebook only)
Our children have been together in special education classrooms since kindergarten, and I always marvel how Elizabeth can spin such an eclectic mix of poetry, song lyrics, progressive politics and cuss words into her funny and starkly truthful daily blog, “a moon, worn as if it had been a shell.”

Her short memoir, the newest of the books listed here, begins when 3-month-old, Sophie is first diagnosed with a rare seizure disorder and the medical field has few answers when the conventional drug therapies don’t work. The book chronicles the family’s move from New York City to Los Angeles, and the need to seek out new, alternative pathways for hope and healing.

Following Ezra: What One Father Learned About Gumby, Otters, Autism and Love from His Extraordinary Son by Tom Fields-Meyer
As a former senior writer for People magazine, Tom really knows how to tell a story that is by turns entertaining, bittersweet and authentic. In this often humorous and touching book, Tom covers a ten-year-span from Ezra’s autism diagnosis to his remarkable Bar Mitzvah. Instead of mourning the typical child that Ezra wasn’t destined to be, Tom and his wife, Rabbi Shawn Fields-Meyer, instead embrace the quirky and wonderful kid that is Ezra.

To give you a flavor of Erza’s Bar Mitzvah speech, he said, “Sometimes I think that all Jewish people are autistic.  Jews repeat things all the time.” And he goes on to offer his proof: “We repeat Shabbat every week. And we sing the same songs like ‘Shalom Aleichem' and ‘Adon Olam’.”

Now I See the Moon: A Mother, A Son, A Miracle by Elaine Hall
I’ve known Elaine for many moons (pun intended) yet I still learned so much after reading this book about her journey with her adopted son, Neal, who has non-verbal autism. Drawing upon her background as a Hollywood acting coach, Elaine came to realize that using theater and the performing arts was a more effective way to break down the communication barriers with her son, and others with autism, than with many of the conventional therapy modalities.

Taking the acting modality one step further, Elaine created The Miracle Project, with two tracks –general and Jewish-themed with the later funded by a grant from the Los Angeles Jewish Community Foundation. The general community version later became the focus of a HBO documentary, “Autism: The Musical” and the rest, as they say is history, with the film winning two Emmys, and parents around the country asking for the Miracle Project approach to be replicated in their own communities.

Strange Son: Two Mothers, Two Sons and the Quest to Unlock the Hidden World of Autism by Portia Iversen
This book was published in 2006, much earlier than the others on the list, and it vividly illustrates how two mothers of boys with non-verbal autism were able to connect with each other, and with their sons, using a novel means of letter pointing as a mode of communication. Portia was also in the entertainment “biz”, along with her husband Jon Shestack, and after their son, Dov, was diagnosed with autism, they established together Cure Autism Now Foundation, focused on autism research around the world.

Through her research, Portia learned about Soma Mukhopadhyay from South India, mother of Tito, who also has non-verbal autism. On her own, Soma developed a “rapid prompting” method of pointing at letters to form words and Tito learned to read and write, was tested with very high IQ and has himself written books and poetry. The book deftly shares the everyday challenges of “extreme parenting” while also demonstrating perseverance and love.

Ido in Autismland: Climbing out of Autism’s Silent Prison by Ido Kedar
As I mentioned earlier, this is the only book of the six written as a first-person account by a person with autism. Until he was seven, and learned the Rapid Prompting Method from Soma (see Strange Son), Ido was unable to communicate, and most professionals assumed wrongly he was intellectually disabled. With support from his family, Soma, and other innovative professionals, Ido has become a public advocate, blogger and author. His insights can change the way you see the world, not just people with autism. As he writes in his book, ” I am not a mistake, nor a sorry state of messy neurons. I accept my messy neurological system because it has given me a way of seeing life.“

Hope Will Find You: My Search for the Wisdom to Stop Waiting and Start Living by Naomi Levy
A beautifully penned memoir with soaring words, rabbinic wisdom and pragmatic lessons. After her daughter is diagnosed at age 5 as potentially having a rare, fatal degenerative neurological disease, Rabbi Naomi Levy puts her professional life on hold to, as she writes, “fix her” daughter, and while doing so, she finds herself in too many waiting rooms, both real and metaphorical.

Not to give too much away, but the book ends on a very positive note with a universal message of resilience and the need to help each other out.  At Noa’s Bat Mitzvah, she ended her talk by saying “My Haftorah tells us that if you don’t have good luck, if you’re missing something, you will find it, so don’t lose hope in yourself…”

Now that’s advice that will stick around long after summer days turn to colder and darker seasons of life.