Hi, Argentina! Hey, Canada! Hola, Mexico! Hey there, Oklahoma! What’s up, Boston? Cheerio, London! Aloha, Hawaii!
To everyone who took the time to read about Benji’s milestone Bar Mitzvah (http://www.kveller.com/doctors-said-my-son-with-autism-wouldnt-talk-but-he-just-lead-his-own-bar-mitzvah-service/) and felt compelled to reach out to me, I get it, I feel you, and I want to help. Not only does Autism speak, but it also connects and unites, and I am beyond grateful that our family’s journey has enabled me to connect with all of you. My heart is full, and so is my inbox. It is awe-inspiring to be 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. 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.
I continued to read. A lot. Books, magazines, online articles...Many ideas resonated with me, but finally, one really stood out, the book, 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 and to follow my intuition. Just like all of you, I would make any sacrifice to help my child. So, we flew from Florida to Atlanta to work with Autistic author and therapist, Judith Bluestone, on The Handle Method. This new approach to therapy was designed to lessen the sensory issues associated with Autism with gentle enhancement and movement to ultimately change the neuroplasticity in his 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, 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 made the connection 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 with us and in her book. Details about her organization and its work can be found at http://www.handle.org.
The Fabric of Autism by Judith Bluestone
2. BE REALISTIC YET OPTIMISTIC, ESPECIALLY ON THE MORE 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 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. Brutal honesty, 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 of which we were already so painfully aware. Donna’s optimism started to change my view from trending toward negative to be realistic yet optimistic. 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 MAKES 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 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.
The doctor we used is located in Davie, Florida. He publishes a weekly blog which contains lots of useful information.
3. FIND THE RIGHT SCHOOL PARTNER
This is a big one. Our children spend more time in school during the week than they do with us as parents. We searched and searched for an educational environment that would partner with us to help Benji reach his potential. We sought a school whose administration and teachers would focus on his abilities, not deficits. We found a warm, supportive, communicative environment where individualized learning was the norm. Although this is a mainstream program, Jewish day school turned out to be an excellent fit.
Our Jewish community day school has always been a place where Benji belonged. The school community cherished his quirks and helped him reach where he is today, fostering his innate love of Judaism along the way. The teachers and families welcomed us with open arms, teaching the students that someone who is a little different is someone to be treasured. We have an open dialog with teachers and administration who all feel like they are a part of Benji’s upbringing. Benji would not be who or where he is today without the love, support, and guidance from his Jewish day school.
4. EXPLORE ALTERNATIVE INTERVENTIONS
Yes, alternative therapies can be expensive, but for us they were essential. So, early on in our journey, we tried:
* Hippotherapy/therapeutic horseback riding
* Craniosacral therapy
* RDI (relationship development intervention)
* Therapeutic summer camps
* Sound stimulation, The Listening Program®, and therapeutic stimulation
* The Masgutova Method
All of these helped Benji navigate the world a little more easily, and every amount of progress, no matter how minute, made us a little less fearful about Benji’s future.
5. PROVIDE A SCAFFOLD FOR SOCIAL SKILLS IMMERSION
Now that speech therapy honed Benji’s ability to communicate with words (verbal), it became apparent that he was missing the nuance of language (non-verbal). Intensive speech therapy logically led into pragmatic language and social skills therapy. We tried many theories of social skills development, all of which had some impact on helping Benji better connect with people around him.
Social skills immersion comes in many forms including Social Thinking® and cognitive behavioral thinking, which taught Benji how to think about others and what they might be thinking. Some programs designed for kids who could benefit from learning social nuances and interactions are:
*PEERS® (a program started by the MIND institute, practitioners located throughout the country)
*Social skills camps (day camp and later, overnight/sleepaway camp - yes, it is possible!)
* RDI (relationship development intervention), mentioned above
Today, Benji still struggles at times, especially in larger groups, but has a knack for sizing people up and understanding people’s differences. He is loving, forgiving and has a heart of gold.
Again, I am not a doctor, just an intuitive mom who followed her gut toward progress and solutions. Every child is different and what may be successful for Benji may not be right for your child. Don’t get discouraged if something isn’t working for your family because for every treatment that did not work, there is a possibility that another one will. I hope that you continue to keep sending me your stories and notes. Advocating for your child can be exhausting and frustrating, and like you, I live for the triumphs, both big and small. For us, it led to our milestone moment of watching Benji soar at his Bar Mitzvah service.
Keep researching and testing, keep trying, exhaust every possibility. Follow your intuition and know when it is time for the next, and next, and next. If you’ve tried it, and it isn’t working, trust yourself to know when to move on. Continue to share your stories. Remember, regardless of where you are in the world and on this journey, we’re in it together.