Living with autism

Living with autism

Mother talks about her family at the Kaplen JCC on the Palisades in Tenafly

Liane Kupferberg Carter with her son Mickey.
Liane Kupferberg Carter with her son Mickey.

“Happy families are all alike; every unhappy family is unhappy in its own way.”

Leo Tolstoy told us that in “Anna Karenina,” almost 150 years ago. It’s treated as received wisdom, but when you think about it you realize that actually it doesn’t mean very much.

There is no such thing as two families that are alike; there is no such thing as a family that is so untouched by disease or history that it always can be called happy. (There might be families unhappy all the time, and in similar ways; luckily we need not go there now.)

When Liane Kupferberg Carter and her husband, Marc, started their family, they made the same general assumptions most of us middle- or upper-middle-class New York metropolitan area Jews make, about how they would have children, who would go on to excel in school and friendship, and then at college, and then have stellar jobs, and then marry and raise their own spectacular children.

Of course, those assumptions always get a bit battered, but for many of us the basics remain.

It’s different if one of your children is autistic, as Ms. Carter learned. The depth and ferocity of the love is the same, but the assumptions get turned on their heads.

In her memoir, “Ketchup Is My Favorite Vegetable: A Family Grows Up With Autism,” which she will discuss at the Kaplen JCC on the Palisades in Tenafly on Sunday, April 23, to mark the end of Jewish Disabilities and Inclusion Month (see the box for more information), Ms. Carter explores her family’s life, their growing understanding of autism and how their sons, Mickey, who has autism, and Jonathan, who does not, grew, and she also looks at some of the politics surrounding the condition.

The Carters gradually learned that their younger son, Mickey, had autism; they saw troubling signs, particularly his slow speech acquisition, but were far more comfortable ascribing it to any number of other, less scary sounding conditions. Once they realized that it was autism, however, they devoted themselves to getting the best possible services for Mickey, while trying to ensure that Jonathan’s life was as steady as possible. It’s a hard balancing act, and Ms. Carter is forthright as she describes some of the problems she and her husband encountered.

Mickey is now 23, and the world he and other people with autism face has changed a great deal since he was a baby, “when he was 2 years old and was kicked out of our temple’s nursery school,” Ms. Carter said. “It wasn’t that he did anything bad. He wasn’t stealing Legos. He was very sweet and very sunny, but he didn’t have any language, and he didn’t sit still when the teachers talked. He wasn’t paying attention. It was easier to ignore him. He wasn’t even in the school picture. And he wandered off — that’s very common with kids with autism. He could take off, and they didn’t notice. It was scary and dangerous and hurtful.

“At one point, we took him for speech evaluation, and I told the nursery school director that Mickey had just been diagnosed with speech and language disorder. And she said to me, ‘Is that all it is?’

“It was so hurtful. Maybe she just meant that it was a relief — good, that’s all it is — but that’s not how I heard it. And the next year, she told us not to come back.”

That story encapsulates much of the hurt and worry parents of young children with autism can feel. They don’t know exactly what they are dealing with, they know their child is different from other children, they know it’s their job to protect their child but they’re not sure how, or against what. And the rest of the world isn’t exactly being unreasonable either — no one knows what they’re dealing with, or how best to help.

When Mickey first was diagnosed, the Carters tried frantically to help, and found themselves falling for scams. There are many theories about what causes autism, some of them coming from a genuine need to understand it, and others from the genuine need to separate desperate parents from their money. The more sunlight on autism, the better, she said.

And no, vaccines do not cause autism. That is a thoroughly debunked hypothesis, she said, and not vaccinating children is unwise and dangerous. Mr. Trump appears to be an anti-vaxxer, “and I am afraid that he is fanning the fear, but the idea never died out. I still hear people bring it up.

“And I can understand it,” she added. “When you are desperate, and you don’t have answers, you want to blame something. That is human nature. And when the possibility of autism being caused by vaccination first was brought up, it made sense to investigate it.

“And it was investigated, and there were no links. Absolutely no links.”

But the controversy still rages.

06-2-V-liane-book-cover-0414The desire not to look at autism or other special needs is changing in the Jewish world, Ms. Carter said. She’s been on the board of Matan — the organization that works toward inclusion, calls itself the “national voice in Jewish special education,” and is run by Dori Kirshner of Closter — for “a long time,” she said. “I think I’m the only parent who has been on the board consistently for this long. Most of the other people on it are educators, specialists in special education, and I am a bit of an outlier, but I bring the parents’ voice to the discussion.”

She thinks that Matan has helped. “I know that my own temple,” in Westchester County, “has gotten a lot better,” she said. “In the beginning, they didn’t know what to do with us. Almost 20 years ago, the word ‘inclusion’ was on almost no one’s lips. Nothing was done out of malice. We just weren’t on the radar. But as I became more comfortable in the community, and started meeting like-minded other special-needs moms, I learned that we all had stories.

“Eventually, we sat down with our rabbi, Rick Jacobs” — who now heads the Reform movement as president of the Union for Reform Judaism but then was her congregational rabbi — “and we said that a lot of us are in crisis every day, and no one here is meeting the needs of our families.

“To his credit, he was a tremendous listener. All of us cried, but he really absorbed everything we had said to him, and then he created an inclusion task force. It’s an ongoing effort — we have things like prayer books in Braille, and having someone sign the service. It’s about being more inclusive to everyone across the life span. We are purchasing mezuzahs to go on doors at wheelchair height. We have come a long way in 20 years.”

Ms. Carter writes about Mickey’s bar mitzvah, which made him happy and brought the congregation to tears of joy; the party afterward was a release into healthy, age-appropriate fun.

Mickey was educated in a good public school district; his parents had to be eternally vigilant and often they had to fight, but they were helped by dedicated teachers and administrators. Much of Ms. Carter’s book describes her run-ins with the system, with figuring out what Mickey should learn — how much academics, how much life skills, with whom, by whom, for what end — and also the ways in which it helped her and her family. Now, though, the situation has changed. “After high school, you go over the cliff,” she said. “The world of adult disability services is very different than in school.

“In school, everyone who works with your child is a professional. It is a vocation. People have degrees, and most of them are in it for the right reasons. They are very dedicated, and you are entitled to appropriate education.

“Once you turn 21 in New York — different ages in different states, but all around there — you go from that to vocational day programs where the staff are paid $10 an hour, and they need only a high school diploma or GED, and no special training. Turnover is high. We have been finding that a lot of the programs out there are glorified baby sitting, or taking them to the mall to walk around and eat in the food court. It is disheartening.”

He is in a program now that is acceptable, but they are looking into alternatives, Ms. Carter said.

The political climate also is unnerving, she said. “People are afraid that the Trump administration will strip IDEA” — that’s the Individuals with Disabilities Education Act that the new secretary of education, Betsy DeVos, said she’d not heard of — “and defund public schools. People are worried about Medicaid being slashed. They also are worried about the general climate of incivility, to understate it. They are worried about the president’s history, starting with his mocking the disabled reporter.” For now, though, these are abstract worries; there are no specific cuts to special education programs in Mr. Trump’s skinny budget, at least as far as she knows, she said.

Mickey still lives at home. “He shows no interest in moving out,” his mother said. “Some of the people in his program have moved out, but he says to me, ‘Mom, I don’t want to live with staff. I just want to live with you.’ I don’t know how we will deal with this one.

“I’m not ready for him to move out, and neither is my husband — and you do hear horror stories about group homes, and that fuels my fear — but I also know that it would be for the best to establish him in a safe living situation now, because we won’t be here forever. It would be better to do it now than when we are old and decrepit.”

Ms. Carter is a writer, and she finds that it helps her deal with her situation. “I hesitate to say that it was therapeutic, because if writing is only therapeutic then you haven’t done your job,” she said. “It was excruciating to work through.

“I had taken really good notes over the years, and saved the emails, so it wasn’t difficult to reconstruct the mechanics, or what words were,” she said. “But to reread the words — it was excruciating, but also cathartic. It was a balance.

“And I wanted to be respectful of everyone in the family. Especially as Jonathan got older, I made a promise to have nothing in print before he saw it first. Not only in this book but in anything I wrote.”

Even with the family’s approval, writing can be dangerous. “Once, I really put my foot in it,” Ms. Carter said. “I wrote a piece in the Huffington Post seven year ago, and at the end of it, I called autism ‘the enemy.’ That was the phrase I used.

“I got a lot of heat for it. A lot of angry emails. And I did come around to seeing it that way. There are people on the spectrum who are fairly high functioning — a term I hate, but it’s the one we use — in the sense that they are verbal and well able to express themselves.

“They feel that their autism is so inextricably bound up in who they are and the way that they are wired that to say that autism is the enemy is to say that they are the enemy.

“I would never use those words today. I would have written that piece differently. I titled it ‘A Call For Civility’ because there was such a war going on, and I was saying — I hate to quote Rodney King, but really I was saying ‘Can’t we all get along?’”

Next Sunday, Ms. Carter will talk about the need for better inclusion in the Jewish community. She’ll also talk about “how I got from there to here. About the whole journey of pain and devastation, and moving from that to acceptance.”

And even happiness. “I really do feel that we have a normal family in many ways,” Ms. Carter said.

Who: Writer and advocate Liane Kupferberg Carter

What: Will talk about her memoir, “Ketchup is my Favorite Vegetable”

Where: At the Kaplen JCC on the Palisades, 411 East Clinton Ave. in Tenafly

When: On Sunday, April 23, at 11 a.m.

Why: To conclude the JCC’s recognition of Jewish Disabilities and Inclusion Month

And: It’s free and open to the community

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