Last week, after sharing the story about my son’s Benji’s milestone bar mitzvah, I heard from parents in Canada, Mexico, Boston, London and Hawaii. To all those parents, I get it, I feel you, and I want to help. Not only does Autism speak, but it also unites, and I am beyond grateful that our family’s journey has enabled me to connect with so many others. My heart is full, and so is my inbox, flooded with your stories that are so relatable to me and to countless others in our inadvertent global kinship. These narratives motivated me to share some specifics on how we went from depressing diagnosis to groundbreaking bar mitzvah, with the chance that maybe I could help guide someone who sits where I did 10 years ago.
The common question from all of your emails centers around wanting to know what we did to help Benji from the earliest years of his diagnosis. Keep in mind: I write this not as a medical professional, Autism specialist, nor a miracle worker; I write as Benji’s mom, whose sole Autism-related expertise is tireless research and trial, and following my intuition on my own child’s needs. Here is some information on what we believed helped to kick start Benji into “being the best Benji he could be.”
1. Read, research and if it hits home, try it.
It all began with research. I started reading anything and everything I could related to developmental disorders. There was so much data out there, and it all seemed to point toward the therapy trinity: physical, occupational, and speech. So I signed up Benji for these traditional therapies with traditional therapists. A few results started to take shape as we saw Benji begin to close the developmental gap. No victory was too small; by 39 months, he was operating on a 23-month-old level. Despite the progress, we faced frustrations when two speech therapists in a row gave up after many months with no evolution. All I kept thinking was, even the therapists threw in the towel.
But I continued to read. A lot. Books, magazines, online articles…Many ideas resonated with me, but finally, one really stood out, from a book called “The Fabric of Autism.” My husband and I applied our mantra, “If it isn’t going to hurt Benji, we’d give it a try.” At the time, Benji was four and it meant leaving my baby daughter with family in order to take this leap of faith. Just like all of you, I would make any sacrifice to help my child. So, we flew from Florida to Atlanta to work with author and therapist, Judith Bluestone, on a therapeutic approach called The Handle Method. This new approach was designed to lessen the sensory issues associated with Autism with gentle enhancement and movement that would ultimately change the neuroplasticity in my son’s system without stressing his brain. To our shock and delight, the changes were almost immediate.
Once Benji’s body calmed down and he was able to self regulate a bit further, it opened his mind and gave him the ability to absorb the therapies he had been receiving since he was a toddler. After two weeks of this work, Benji started to communicate more clearly and began engaging us in conversation. He asked his first real questions: “Where daddy? He at work?” He began to comment on things he noticed around him. He understood that there was an order of events. He saw that Judith was there to help him and considered her among his first friends. This was our first major breakthrough; the first time we had hope. Unfortunately, Judith passed away several years ago, but her work lives on.
2. Be realistic yet optimistic on the most challenging days.
It’s hard. Even with all of the progress, I found it difficult to be optimistic, particularly in the social scene. I saw other kids who weren’t afraid of their own shadows, who were hard-wired to be comfortable in their own skin, and naturally had the instinct to venture away from their mother’s leg. I was the most social person, and yet felt the most isolated.
There were many mornings where it took all of my strength and courage to get out of bed and enter back into the same dark place I was in the day before. There were days when I felt like I didn’t know what I was doing and others where I thought we were going in the right direction. Honestly, sometimes I wished someone else was chosen to face these challenges.
We stayed the course and found some traditional therapists who were finally able to reach Benji. His third speech therapist, Donna Wexler, was one who “unlocked” his ability to communicate. Every time we saw Donna, she focused on what was right rather than reminding us of the deficits. Donna’s optimism started to change my view, too. Over time, even though the negative was still there, I stopped focusing on it (even if I had to grit my teeth sometimes to do so)! I came to realize that negative thinking is counterproductive and has no place around my children or my world. The journey to reaching Benji taught me that. Deal with each reality as it comes. Find your person, your guide, your mentor. Look for a break in the clouds no matter how slight. It’s always there.
3. Diet made a difference.
When Benji was two, one of his therapists observed that everything he ate was gluten-based and that he might benefit from removing it from his diet. At that point in time, I couldn’t fathom changing Benji’s diet since chicken nuggets (only two brands were acceptable), pasta, cereal bars and french fries were the only foods he was willing to eat. I was afraid he’d starve if we changed his diet, so we chose not to. Later, when Benji was in kindergarten and struggled to pay attention, we became more open to a diet change. Still apprehensive, we consulted a developmental pediatrician in Florida who recommended we test Benji for food sensitivities rather than arbitrarily deciding to go gluten and casein free. It turned out that as was suspected when Benji was a toddler, gluten was the issue. It was a trying week when we said “good riddance” to gluten, but within a short time, the fog lifted and Benji became much more present and focused.
Stay tuned for more about Benji’s journey at Kveller tomorrow.