Families of kids with autism share struggles as well as gifts
It’s a fine spring afternoon, and there is happy mayhem in the Cherry Hill backyard of the Landau family.
Mom and dad, Nicole and Adam, are keeping an eye on the family’s new puppy, Lucy, and 5-year-old Jessica is enjoying the puppy in the unique way 5-year-olds — and puppies — discover.
Ten-year-old twins Benjamin and Nathaniel, are roughhousing with their dad. Ben, especially, is giggling with delight at the high-jinks. It’s such a delightfully typical sight that a stranger in their midst might not notice, at first, that Ben’s reactions are somewhat different from his twin’s.
But after a while, it’s more apparent that Ben isn’t talking, and that he seems, somehow, in his own world despite the active play.
Ben has autism. Nathaniel does not.
And this wonderful young family has had to come to terms with the unrelenting realities of rearing a special needs child in a family constellation.
Adam Landau spoke publicly about just how that feels at a recent symposium open to the community and sponsored by the Samost Jewish Family and Children’ Service Special Needs program and the Jewish Community Center’s ACHaD Special Needs Program.
“Ben is nonverbal — he’s sweet, affectionate, mischievous and funny, and has a good and kind soul,” said Landau to nearly 100 parents gathered for the event. “But it’s challenging, and also exhausting and confusing.”
Landau, who also was speaking on behalf of his wife sitting in the audience, emphasized how deeply connected his twin boys are, and how much Ben means to Nathaniel.
“He deeply cares for his brother although Ben has never, ever spoken his name.”
That care was evident on that golden afternoon when the brothers played with their dad, and then Nathaniel shared his feelings about his twin.
“I think of him as my best friend,” said Nathaniel as Ben sat somewhat apart from the family, quietly playing. “I never ever fight with Benny even though he sometimes messes up my things. And when anyone says anything bad about him, I tell them that that’s mean, and that he looks normal, but he might not say ‘hi’ back if someone says ‘hi’ to him.”
And then Nathaniel summed up what he sees as his brotherly obligation: “I teach Benny things — he has to learn things. And we’re twins, so sometimes I think I understand him better than anybody.”
Adam and Nicole Landau agree. “It’s the twin connection that sets them apart. It’s there, and it reaches beyond Ben’s autism,” says Nicole.
Precocious little sister Jessica tells visitors the moment they arrive at her house that “my brother Ben has autism.” According to her parents, she is completely at ease with having two brothers who are markedly different, and somehow knows instinctively how to deal with each of them.
“We worry about Ben’s future, of course,” says his father. “But as long as he is on this earth, we will love him and care for him. Sometimes,” continues Landau, “Ben will take my face in his hands and stare into my eyes. Maybe it’s his way of saying that he knows that we’re here for him, and that God gave Benny to us for a reason.”
At the JFCS/ACHaD symposium, the profound issue of how to handle the challenges of special needs children without collapsing under the weight of it all was discussed by a panel of parents who are experts — they are living it.
The moderator, Dr. Dan Gottlieb, the well-known radio psychotherapist and host of WHYY’s “Voices in the Family,” didn’t mince words. Gottlieb, who was severely disabled by a freak car accident decades ago, noted that sometimes, life’s challenges “come out of nowhere.”
“And ‘nowhere,’ ” said Gottlieb, “is everywhere. We assume that tomorrow will look like today, but it doesn’t happen that way.”
Panelist Rabbi Judith Abrahamson of Bensalem, Pa., an educational resource specialist at the Reconstructionist Rabbinical College in Wyncote, Pa., had her “out of nowhere” experience when her special- needs daughter Lauren was born severely medically fragile and cognitively impaired. Lauren, who was not expected to live very long, is now 29 years old.
“I live a life of gratitude,” said the rabbi, “and I try to make every moment count and live a life of celebration.”
Is it easy? Not at all, said Rabbi Abrahamson. “But for all Lauren has taught me, I am deeply grateful.”
For Susan Berman of Barrington, there was enormous pain in watching her son retreat into himself as a toddler, and suffer enormous setbacks in his physical and emotional health.
“We always thought he would bounce back again, and when he didn’t, there was just such sadness. He’s right there in my soul with me, and part of my mind is always, always occupied with him.”
Berman, who teaches Jewish studies, was honest and open about the grief she felt — and feels — about her son’s future.
“His life is very small,” she said. “Tolerating the suffering of another, especially a child, is the most painful experience I can imagine.”
Barbara Abrams, an organizer of the event, summed up what the mission had been:
“It was so important to give these parents an opportunity to share their feelings. We have to remember that these are people with their own needs who are constantly seeing to the needs of others.”