Navigating the World with Autism: A Mother's Story

When Meira Barnea-Goldberg wrote this post, she never imagined her Facebook page would soon be filled with hundreds of supportive comments. Barnea-Goldberg, the mother of an autistic child named Avishai, shares her experiences with a society that often doesn't quite understand the integration of a child with autism. "When did I realize I needed to address the school staff about autism, even though Avishai and I are not facing any specific issues with the school at the moment? When I asked his teacher if all teachers know Avishai is autistic, and she replied: 'Yes, generally, but they tend to forget because he's so charming it’s easy to overlook.'"

This realization struck a chord with her. "You can't forget that my son is autistic. I wanted to give a talk that any teacher would remember forever. I wanted them to remember how I spoke and how I sometimes struggled to hold back tears, and to firmly hold on to every word I said," she writes, explaining it was the catalyst for her decision to deliver a 200-minute lecture on integrating autistic children in mainstream schools.

Barnea-Goldberg gave her lecture to the school's management and teachers, and "without realizing it, an hour flew by. Even when I finished speaking, it seemed no one wanted to leave, and right after the lecture, I received countless calls from teachers wanting to continue the conversation personally."

On one hand, she was grateful to be the torch guiding others, but on the other, she couldn’t hide her emotions. "Being a mother to an autistic child is challenging," she admits. "It’s not always obvious a child needs help. Many parents have told me, tearfully, they wish their child was physically handicapped so it would be obvious he needs help. Having a high-functioning autistic child is like riding a roller coaster—sometimes we’re up, and sometimes we’re down. Sometimes I look at my son and tell myself: 'Wow, surely there’s a mistake; he’s just a regular kid.' Then a situation arises that brings us down. Because autism isn’t going anywhere, not anywhere at all. There’s no escaping it."

Many Parents Who Didn't Know Avishai Has Autism Laughed at Me and Called Me the 'Anxious Mom'

As an example of such a situation, Barnea-Goldberg describes Avishai's birthdays at kindergarten. "For three years, I couldn’t leave him alone at a birthday party—I had to sit next to him on the rug with all the kids, massage him so he could sit and absorb all the noise, commotion, and chaos. So many conversations before, during, and after the event.

"Many parents who didn’t know Avishai has autism laughed at me and called me the 'anxious mom,' but I kept doing what needed to be done. Slowly, I saw improvement, and in the last year of kindergarten, I could finally sit with the other moms aside. I'll never forget that day... How I cried. How many tears... It was the last birthday of the year in the gymboree. The moms who had supported me all those years said it was amazing the progress we made, and that I could finally let go and allow my son to be like everyone else. That nothing was noticeable about him."

And suddenly, it hit her. "I saw my son doing something inappropriate, something you're not supposed to do. He explained that his best friend from kindergarten told him it would be hilarious, and everyone would be happy if he did it." He didn’t understand what was wrong with his actions.

"In a moment, I understood he wasn't reading the map correctly. For my son, there is no gray area—only black and white. Either he loves you, or he doesn't. Either you love him, or you don't. There's no in-between. You'll need clear words to explain if you're angry, sad, happy, afraid, excited, or bored."

Because, like him, her son says exactly what he thinks, and there is no point in punishing him or calling him rude. Also, there's no sense in arguing with him. "You can talk to him later and have a conversation. But in real-time, he won't comprehend why he's being punished, nor understand that he behaved rudely."

Because when people understand the story behind this child, they all become more understanding. "I told them Avishai was born after five years of fertility treatments, that I almost died in childbirth with him, that he has always been a sociable baby and child, that we sold our house to finance his treatments... I told them about Avishai's daily schedule and how my house looked like a train station at certain periods—with therapists coming in and going out constantly. I told them about his anxieties, eating disorders, sleeping disorders... and how nobody believed me that he had autism, and the clinic thought I was a crazy mom. It was only at Assaf Harofeh Hospital they understood we had a confusing child with high-functioning autism. I told them he has dreams, ambitions, and desires, and I see he will achieve them all.

I told them Avishai knows he's different, but for him, that's something good. Because all these years, I've planted the belief in him that he's very special. Even if another child laughs at him for being autistic, Avishai won't be offended—because he sees autism as an advantage.

"I shared so much more. After all, I talked for an hour. But the most important thing about integrating special children into school, the first thing the school staff and management need, is goodwill and caring. If that exists, any challenge can be overcome. Fortunately, goodwill and caring are present at Avishai's school, and I hope he will always be accompanied by such teachers. I concluded by telling them I’m very optimistic. I feel Avishai will integrate well into society, but his foundation starts here in school, and they are a part of his and my journey to success."