73: Our Passover Story

73: Our Passover Story

From Chicken Soup for the Soul: Raising Kids on the Spectrum

Our Passover Story

Other things may change but we start and end with family.

~Anthony Brandt

“Why doesn’t Josh talk?” my niece Abby asked.

I knew that this question would eventually come up. I’d tried to prepare for it.

We had all arrived in Florida the day before, a Passover vacation courtesy of my mother. Apparently the yearly spring ritual of switching dishes over and removing every speck of leavened bread had worn her out the prior year. She had called me post-holiday and declared, “I’m never doing this again. You and your two sisters are invited to join us wherever we decide to go.”

After researching options with her travel agent, Orlando was the chosen destination, and I was presented with a decision: stay home for eight days, or take my spouse and son with autism on a three-hour plane ride to a new environment.

“What do you think, Aaron?” I had asked my husband.

“I think it’s a crap shoot,” he had replied honestly.

“Crap being the operative word?” I cynically retorted. If our then four-year-old didn’t comfortably handle all the changes and transitions involved in accepting my mother’s generous gift, crap is exactly what everyone joining this excursion would be dealing with. My parents, sisters, one of their husbands, and their twin ten-year-old boys, eight-year-old daughter and a four-year-old son, all of them “neurotypicals,” would be coming along. We’d all be sharing a five-bedroom rental house with a pool. It wasn’t only our comfort that we had to take into consideration; it was theirs too.

We thought about it and decided that it was worth the risk. Not only would the April weather in Florida be more predictable and enjoyable than that of New York, there would be so much more to do. I’d researched activity options online and found that both Disney World and Sea World have accommodations for children with autism. All you needed was a copy of a medical evaluation confirming your child’s diagnosis; then you were granted immediate access to those rides that have VIP lines. If a given ride only had one line, there were designated areas that were less noisy and more shaded for those on the spectrum. If nothing else, we knew we were headed into theme parks that were sensitive and tolerant of our situation.

Like any parent with a child going on an unpredictable flight, I loaded up on Josh’s staples and reinforcers. I had a magnetic drawing tablet, a DVD player loaded with his favorite Sesame Street DVDs, cookies and potato chips. Surprisingly enough, once we finally got to the airport and settled on the plane, it all went relatively smoothly. Josh drew and munched from the time we took off until the time we landed. It wasn’t until we landed in Florida that behavioral issues arose.

I couldn’t blame Josh for the meltdown. We had asked a lot of him over the past several hours, herding him from car to airplane to shuttle van. When we arrived at the car rental place, we were all hot, tired and worn out. The fact that the three cars we had ordered weren’t ready and the building that we had been brought to was miniscule didn’t help. My practically nonverbal child threw himself down in the parking lot and flew into full meltdown mode.

After what seemed like hours, we finally obtained our vehicles and headed to what would be our home for the next eight days. We all unpacked, got settled in our rooms and did what we had to do to prepare for the holiday, which started the next day at sundown. It wasn’t until we were all swimming together the following afternoon that Abby asked her question about Josh’s condition. And since all of my sister’s children were present, as were both their parents and mine from a distance, this was as good a time as any to discuss it.

“Josh has something called autism,” I explained. “One of the symptoms is that it makes it hard for Josh to speak. That’s why he goes to a special school that tries to teach him how to talk.”

“Will he ever talk?” asked Evan.

“We don’t know,” I answered honestly.

Sam looked sad and said, “I feel sorry for him.”

“Don’t feel sorry for him,” I replied, and immediately regretted saying it. I had no business telling any of them how to feel about this and resolved to not do it again.

“If Josh can’t talk, how do you understand him?” Abby wanted to know.

I smiled and said, “I’m his mommy. That’s why I stay at home with him; so I can better understand what he needs and try to find people to help him get it.”

“Will you work when he talks?” she asked.

“Probably,” I answered, wanting to give them at least one concrete answer. The truth was that I hadn’t a clue. It was all so hypothetical. I hadn’t lived in definites since the day of the diagnosis. But my nephews and niece weren’t asking anything that I didn’t ask myself daily. And I wanted answers even more than they did.

Over the remaining course of the holiday Josh was himself. He slept through the Seders, which meant that Aaron and I could partake in them relatively easily. During the day, he ran back and forth in order to fulfill his sensory needs. He bounced off the couches and had nights that were difficult. My family all dealt with this graciously and sympathetically.

As our stay neared its end, Aaron and I discussed what we would do on our last day in Florida. “Let’s do Disney again,” I suggested. Josh had loved it and Aaron agreed.

Sam had been listening and asked, “Can I come with you?”

I looked at him and said, “You know it’s difficult with Josh, right?” Sam had really made an effort to bond with Josh over the course of the holiday; in fact, he had such a positive impact that Josh was saying Sam’s name on command by the time we left Florida.

Sam nodded solemnly and said, “I’ll always love Josh, Aunt Jennifer, even if he’s crazy.”

I smiled and said, “The word is ‘hyperactive,’ Sam,” but I was deeply moved. For the first time over the course of the holiday, someone bedsides Aaron or myself had expressed unconditional love towards my son, and that in and of itself was far too good a feeling to pass over.

~Jennifer Berger

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