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Untold stories: Book shines light on challenges parents face raising special-needs kids

From left, Phil Marguiles, Benji Marguiles, Samantha Marguiles, and Maxine Rosaler.
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It’s about time someone wrote a humorous novel that shines a light on the plight of parents who are coping with unbearable stress and impossible challenges while raising their amazing, special-needs kids.

Washington Heights-based author Maxine Rosaler’s just released, must-read book — “Queen for a Day: A Novel in Stories” (Delphinium Books) — does just that.

In the book, Rosaler’s own experience and her quest for answers as the mother of an autistic son are told from the perspective of her novel’s heroine, New York City parent Mimi Slavitt, and her circle of funny but frustrated friends who are conflicted, complex characters all trying to stay emotionally afloat while raising children with special needs.

It “crackles with insight, energy, and New York City wit,” according to Eliza Factor, author of “Strange Beauty,” who says Rosaler is “compassion­ate and wonderfully unsentimental in her portrayal of [Mimi and her friends’] fear and fury, longing and isolation.” Factor says the author is “really good at capturing the random bursts of connection so endemic to New York City street life, and her take on the Kafkaesque bureaucracy, otherwise known as the Department of Education, is hilarious.”

Factor says she “loved this book and recommend it highly, not only to parents dealing with autism, but to anyone who enjoys gritty, funny, heartbreaking, and ultimately affirming stories of modern family life.”

Surprising inspiration

In one episode of the strange 1950s game show “Queen for a Day,” host Jack Bailey asks the all-female audience: “Would you like to be queen for a day?”

As the women applaud and cheer loudly, a super long, top-of-the-line Chrysler Imperial appears onstage, waiting to whisk one lucky lady away for a day in movie land if she’s crowned queen. The winning contestant enjoys additional perks, as well, like an entire wardrobe fit for a queen … and a deluxe vacuum cleaner! But the super-duper prizes are the ones that these worn-out housewives were really hoping for in the event they were chosen to sit on the throne. They were modest requests by today’s standards. Washers were a popular choice.

A mother of seven asked for a diaper service for her triplets, and another, a haggard-looking former waitress, only wished for a wheelchair and special exercise bike for her disabled son. But the smartest one of all told the host she could really use some time away. After all, she had been a caretaker her entire life. In the end, the mom with the special-needs boy won.

While all of these wives, mothers, and caretakers had devoted their entire lives to their families and sacrificed their own happiness and dreams for domestic bliss, there were perhaps some who dreamed of the day they could just walk away from it all.

After all, they never asked for this. Never expected that their lives would be so hard. It had all been thrust upon them and nobody asked.

There were times when Rosaler’s heroine, Mimi, felt that way.

And it was that vintage TV show from a naïve, bygone era of societally enforced domesticity, coupled with quiet discontent, that had been the surprising inspiration for the author’s new novel. Rosaler’s authentic stories examine imperfect women (not martyrs or saints) living mostly unfulfilled lives laced with overwhelming misery, fear, and isolation; parents who yearn for fun and freedom but can only enjoy fleeting moments of triumph and normalcy.

You can’t blame those women from the ’50s, for they neither had the insight nor self-awareness to understand how to change their lives for the better — had they been able to. Therefore, they accepted the cards they were dealt with what seems like a form of graciousness born of an unselfish nature. During that time, options for women were limited, and “finding happiness” wasn’t considered a priority until the Women’s Lib movement and the “me” generation expanded the list of acceptable personal desires and goals. That’s when people — both women and men — wanted more out of life.

“But now I told myself: ‘Wake up, Mimi! Is this how you want to be? Seeing misery in every grain of sand?’ ” Rosaler writes.

Drawing from real life

Mimi was in denial when she found out her young son, Danny, had autism.

The author says getting support as her child was growing up was challenging as well.

“There were years when all I did from the moment I woke up to the moment I went to sleep, was work to get Benjy the help to which the Individuals with Disabilities Act supposedly entitled him,” she recalled.

So, how do moms and dads raising special-needs kids learn how to accept things as they are? And if they can’t, what’s the alternative? And, should parents put aside their happiness for the sake of their children?

The author, whose son Benjy is now 26, opened up about her life and her family. She says “Queen for a Day” is the most important story she has ever told.

Tammy Scileppi: Why did you write this unique novel?

Maxine Rosaler: I was a writer before I became a mother, but for a long time after my son’s diagnosis with autism, all I wrote were letters begging the Board of Education to help Benjy, and various treatises and documents I created to support my efforts. When the air started to clear a little bit, I went back to writing fiction. Eventually, I decided to map out a collection of short stories based on my experiences being the mother of a child with autism.

TS: Tell NY Parenting readers about your son, his interests, and what he’s been up to.

MR: Benjy is, to a remarkable degree, the same person he has always been. Incredibly cheerful and inquisitive and a delight to be around. Of course, there have always been the things we wanted to “fix” about him — his impulsiveness, his lack of social awareness, his problems with organization — the list goes on. But I’m happy to say that as much as Phil and I have been trying so hard to fix Benjy, we have never damaged his spirit. He remains indomitably himself.

Benjy is a junior at City College, where he is majoring in chemistry. Through New York State’s Self-Direction program, I am able to hire people to go to school with my son, to make sure he pays attention and doesn’t call out in class.

He has a ton of interests and hobbies, including rocks and minerals, musical instruments (how they are constructed), botany, birds, biology, chemistry, physics, orchestrating video music, playing piano, playing violin (which he has been studying seriously for the past eight years), geology, geography, entomology, etymology, and so much more.

I can’t say that Benjy has ever really had a friend — the closest he has ever come to having friends are the mentors who work with him. But obviously, it’s not the same. That’s always been on my list: to find Benjy a friend who shares one of his many interests.

As far as goals are concerned, Benjy does not have a realistic understanding of what it means to have goals, nor what it takes to achieve one’s goals. This is one of many things that are on our list of things we need to work on with him.

TS: Describe what raising your special child has been like?

MR: Benjy was a joyful baby, and a joyful child. He is still full of joy, although there are signs of anxiety that I am beginning to recognize that I never realized were there. He doesn’t have a mean bone in his body. He is without vanity, pride, jealousy, envy, or any of the usual vices. His unquenchable thirst for knowledge and the agility with which he is able to absorb and assimilate all sorts of information amazes everyone who knows him.

We have had to teach — and continue to teach — Benjy the things that other children seem to pick up automatically. In terms of challenges, there are too many to enumerate here. I would say that his impulsiveness is one of the biggest challenges we have to deal with — for one thing, it put him in danger.

TS: How do your novel’s stories speak to the loneliness and isolation that can be an inherent part of raising a child with a disability?

MR: I think the themes of loneliness and isolation inform every story in the collection. Mimi’s dependence on Amy in the story “Queen for a Day” stands out in my mind as the most cogent manifestation of those feelings. “The Bike Path” is the story that most baldly expresses the misery and loneliness and fear that being the mother of a child with a disability entails: Mimi’s irrational fear of something happening to her husband. Her incapacitating depression. Her overwhelming worry about what will become of her son. The guilt she suffers because of her growing impatience with him.

TS: How did you and your family deal with everything?

MR: I didn’t “deal” with it at all. I just went ahead and threw the full force of myself into everything — no matter how big or how small. Which was a mistake.

Although [my husband] Phil grieved a lot at the beginning, as I pointed out in “Route 94,” he accepted Benjy for who he was a lot sooner and a lot more easily than I did. Also, Phil, unlike me, has always been gifted with an ability to escape (a distinctly male trait, I think). As far as [my daughter] Sammy is concerned, I am just beginning to realize that all this affected her in ways I had never imagined it did.

TS: There must have been some good times?

MR: I can’t think of any specific “good times” to cite as examples here. I can only say that, setting all my worries and anxieties about him aside for a moment, Benjy’s entire way of being — his loving nature, his innocence, his happiness, his endless curiosity, his gifts — is a wonder.

TS: Describe your parenting styles.

MR: Phil knows how to have fun with our children. He knows how to talk to Benjy in ways I do not. Phil, like Benjy, has all sorts of interests and he knows a lot about a lot of things. He also knows how to relax. So, he knows how to have fun. I’m always so busy doing all the behind-the-scenes work that I don’t have time for fun. This is one of my biggest regrets.

TS: How have your son’s issues impacted your marriage?

MR: I think our marriage has been both positively and negatively affected by having a child with a disability. As far as the positive part is concerned, Phil and I just naturally assumed different roles in Benjy’s care. As far as the negative aspects are concerned, living in a constant state of emergency is very stressful, and this is bound to affect a marriage. Since I am by far the biggest worrier, and the more anxious of the two of us, Phil has to live with a woman who is often in a state of high anxiety.

TS: What do you do as a couple to de-stress?

MR: I wouldn’t say that Phil and I ever consciously do anything to relieve the stress. But we have always had fun together, and so just being together is in and of itself a source of comfort and fun to us both. We hardly ever go out, although this is something we know we should do. We’re both too lazy to do it. And aside from the time we spend writing (Phillip Margulies is also a fiction writer), our favorite time is at the end of the day, when all the work is done, and it’s time to go to bed and watch television.

TS: Why should parents of special-needs kids read “Queen for a Day?”

MR: For one thing, when it comes to the books that have been written about autism, I don’t think that the subject of being the mother of a child with autism (or any other disability, for that matter) has been dealt with through fiction or non-fiction the way I deal with it in “Queen for a Day.” My book is both a work of literary fiction and also a kind of expose of the underworld that the parents of children with disabilities inhabit. It portrays a range of mothers (none of whom are anointed with the sainthood that is often automatically conferred on us unfortunate women).

• • •

Look for part two of this interview with Maxine Rosaler, author of “Queen for a Day: A Novel in Stories” (Amazon.com), in next month’s issue.

Tammy Scileppi is a Queens-based freelance writer, parent, and regular contributor to New York Parenting.

Posted 12:00 am, June 5, 2018
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