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 connects and 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 more information on what we believed helped to kick start Benji into “being the best Benji he could be.”
You can read my previous tips on supporting your child with Autism here.
4. 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, because our particular 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.
5. 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, acupuncture, homeopathy, RDI (relationship development intervention), therapeutic summer camps, sound stimulation programs such as The Listening Program and Therapeutic Listening and The Masgutova Method.
None of these methods was a panacea, but 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. Figure out how to “scaffold” or help with 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 something called 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—but you may find your own versions of what worked for us. 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.