February is Jewish Disability Awareness and Inclusion Month (JDAIM), and each Friday this month, we are casting spotlights on community members who face disability in their lives. Today, we are honored to share a spotlight written by Cantor Susie Lewis-Friedman.

There are days in life which forever remain frozen in one’s soul. For my husband Ross and I, that day was in November 2016, just days after Zev’s second birthday, when we heard the words, “Your son has autism. Does this come as a shock to you?” from the Developmental Pediatrician in Illinois which we were fortunate enough to get in to see at the last minute, despite waiting lists years long. We were devastated, crushed, and afraid. We had no idea what this journey had in store for us. Little did we know that this extreme pain and fear would make us better people, strengthen our faith, and bring us and closer to HaShem.

Zev was the second of my miracle babies. He was conceived spontaneously just 9 months after his miracle sister was born, despite many doctors’ “professional opinions” that I would never be able to have children with my own eggs. His little journey was tumultuous, to say the least. He and Abigail were both what I like to call “HUC Babies.” When you heard a “yelp of joy” in the hallways of the Hebrew Union College-Jewish Institute for Religion in New York City (where I had the honor of doing my Cantorial studies and eventually receiving Cantorial Ordination), it was assumed that someone was pregnant. I was one of those “someones,” in fact, 3 out of my 5 years of seminary. During my pregnancy with Zev, I often had complications which forced me to abruptly leave class and run to the doctor. After he was born, his little digestive system was colicky and miserable. Unbeknownst to me, these would be the first of several signs pointing to his later diagnosis of Autism.

Each month of his life, the signs and anxiety continued to increase. Zev’s head grew larger and larger after each monthly checkup. At eight months old, he was diagnosed with macrocephaly, which is the condition of an enlarged infant head. He was a late crawler, and at age 1, did not answer to his name. I was on top of these early signs, because my nephew Wyatt (my brother’s son) is also autistic, and I vowed to “catch it early” and get them in therapy asap if my kids ever exhibited those signs. According to our research, early intervention is the key.

However, doctors told us that because of his attachment to us, his social nature, his amazing eye contact, and his laughter, that he was not autistic. One such doctor said he was fine, and perfectly predicted that Zev would walk at 18 months. That was exactly what happened. While we were on first trip to Disney World at 18 months old, Zev took his first steps. While we were celebrating the happiness this milestone, we were also experiencing the horror of another skill, or rather obsession, that he developed: constantly spinning the wheels of his stroller. Anytime we went anywhere, he would elope to go up to strangers’ strollers and spin the wheels obsessively. When I googled “autism,” I never found such behavior presenting in other kids on the spectrum. But that’s the most complicated, and I would argue, the most frustrating thing about autism: when you know one person with autism, you know ONE person with autism. Kind of like snowflakes. No two snowflakes are alike.

So much of parenting is listening to and following your gut. HaShem talks to us in a kol d’mamah d’akah, a “still small voice.” Early on, Ross and I would find ourselves “following the breadcrumbs” or listening to this voice (our guts) to guide us to help Zev. When we were not getting sensible answers from Zev’s pediatrician, I convinced Ross to switch. We finally found the right one who immediately wrote Zev a referral for an Early Intervention Evaluation where he qualified for 3 out of 4 therapies. We later came to realize that this meant that he likely had autism. Later on, it took working with a speech therapist who ironically did not connect with Zev, to recommend that we see a Developmental Pediatrician and get him a comprehensive neuropsychological evaluation. And then came the diagnosis from Dr. Weedon, which leads us to where we are today.

While having an autistic child was once my worst fear, I am unbelievably grateful that Zevi is living at this particular moment in time, when being neurotypical is more common. For quite some time, schools have been implementing empathy and inclusion curricula, and making conscious, thoughtful efforts to integrate atypical kids into neurotypical classrooms, beginning in elementary school grades. Zev has never been bullied or ridiculed. Today, 8 ½ years since Zev’s initial diagnosis, I am feeling gratitude and not fear. Ross and I feel grateful to live in such a supportive community here in Buffalo, with life-changing services for Zev. Most of all, this journey with Zev has helped Ross and I to have so much more empathy and patience than we ever could have imagined. In short, HaShem created sweet Zevi in HaShem’s image not only to make those around him better people, but to also help us to tap into the idea that we are B’Eitzelem Elohim (created in God’s image), which commands us to partner with God to help him be his best self.

For every challenge Zevi presents, he gives us back 3 times that much with his gifts, one of which is his gift for singing. Here he is at Yizkor, singing one of the most challenging pieces in the repertoire, written for a boy soprano like him, the Chichester Psalms by Leonard Bernstein. He has a passion for cars and can tell you all kinds of details about most of the more common types of cars we see on the road. Most of all, Zev is an angel on this earth. He makes everyone around him happy, makes us laugh, and everyone falls in love with him. Like any child, he thrives when we give him unconditional love, even at the most difficult of times. We can best help him when we listen to that still, small voice, which is HaShem telling us what is best for him. We are so grateful to be a part of this amazing community. Zev is an integral part of our Temple Beth Zion Community, where he refers to Rabbi Gutmann as “Uncle Rabbi” because each time he sees Rabbi, he is enveloped in a warm hug both literally and figuratively, and celebrated throughout the Temple for being exactly who he is. He has been welcomed and celebrated by Nick Utz and all the amazing staff at JCC’s Camp Centerland, especially Aaron Blum, lovingly known as “Mr. Pickle.” His expert therapists even believe that going to Camp Centerland is more beneficial for him than going to summer school.

We can’t wait to see what the future holds for Zev here in this wonderful Jewish community. Who knows? Maybe someday he will be standing on the Bima as your Cantor. Or maybe he’ll be one of the mechanics at Delta Sonic fixing your car. Or maybe both!