The ProsenPeople

Ten Commandments of Special Needs Parenting

Thursday, June 09, 2016 | Permalink

Following her posts on recognizing the sensory overload of celebrating Purim and setting a place for special needs at the seder table, this week Liane Kupferberg Carter continues her exclusive series on celebrating the Jewish holidays in a family with special needs as a Visiting Scribe guest contributor on The ProsenPeople.

During the Festival of Shavuot, which commemorates the giving of the Torah at Mount Sinai, Jews worldwide go to their local synagogues to hear the reading of the Ten Commandments. I follow the official set, but as the parent of a child with a disability I’ve also needed to develop my own set of directives to make me the most effective advocate I can be for my son. Here are my ten commandments for parenting a child with special needs:

1. Thou art the biggest expert on thine own child. As Dr. Spock said more than 70 years ago, “Trust yourself. You know more than you think you do.” No one loves or knows our child better than my husband and I do as his parents.

2. Thou shalt presume competence. My son Mickey is 23 and disabled, but we always assume he wants and is able to learn. We expose him to new experiences whenever we can. We never stop trying to teach him. Presuming competence doesn’t mean we think he automatically gets everything, but we know he is taking it all in, storing it, and processing it on his own timetable—and that he will surprise us with entirely appropriate and insightful comments that clearly indicate he understands.

3. Thou shalt not talk about thy child in front of him. Adults everywhere persist in doing it, and we’re sometimes guilty of it, too. But we have also learned that even when Mickey doesn’t seem to be paying attention, he is. Eye contact is not a reliable indicator: you don’t hear with your eyes!

4. Thou shalt always remember that behavior is communication. With or without spoken language, everyone uses behavior to communicate. When Mickey behaves in a way that challenges us, I remind myself that he isn’t doing it to annoy us. He can’t always find the words to explain, but he’s telling us he feels unsafe, uncomfortable, scared, or overwhelmed. Babies cry when they are wet or hungry; adults yawn when they are bored, or shout when they’re upset. Mickey’s behavior communicates frustration or discomfort; it’s our job to figure out what he’s telling us.

5. Thou shalt not covet someone else’s neurotypical child. This one took me years. When I tuned out what typical kids his age did, I was able to see how much progress Mickey was making. He delights us every day, and I don’t take any of his hard-won milestones for granted. I want for Mickey the same things I want for his brother Jon: to live the most satisfying, independent lives they can, with loving friends, good health, and work that is meaningful to them.

6. Thou shalt accept that ketchup may indeed be a vegetable. Mickey has sensory issues. It’s hard for him to distinguish good flavors when he can’t get past disturbing textures. Lettuce repulses him; carrots make him gag. “Ketchup is my favorite vegetable,” he will tell you, and it’s the only “vegetable” he’ll eat. He also can’t tolerate crowds or loud music. He hates footwear of any kind. While I won’t let him go out wearing shorts in January as he wants to, I’ve also learned that just because I’m cold doesn’t mean he has to put on a sweatshirt. I respect that his sensory system isn’t mine. We’re wired differently. I’m a PC; he’s a Mac. As the Internet meme says: “Autism is not a processing error. It’s a different operating system.”

7. Honor thy fellow autism parents. They are a lifeline. Treasure them. They will validate your feelings, and support you when you are down. They are the ones who really, truly get it.

8. Thou shalt pay attention to the needs of thy nondisabled children. A child’s disability can take over the emotional life of the entire family. Your disabled child may require more of your time, but not more of your love. Make sure to give your other children as much attention as you possibly can.

9. Thou shalt keep thy sense of humor. Do I really need to explain this one? Laughter is rich and restorative. It fosters resilience.

10. Thou shalt take care of thyself. A study of cortisol levels published in the Journal of Autism and Developmental Disorders in 2010 found that mothers of adolescents and adults with autism experience chronic stress levels comparable to that of combat soldiers. I’m no good to my kids if I don't stay healthy and strong. I’ve learned to ask for help when I need it. Because as all special needs parents know, we need to live forever.

Liane Kupferberg Carter is a nationally-known writer and advocate for the autism community and a co-author of the Autism Speaks Advocacy Took Kit. She is currently touring for the 2016 – 2017 season on her memoir Ketchup Is My Favorite Vegetable through the JBC Network.

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Let My People In: Bringing Children and Adults with Disabilities to the Seder Table

Monday, April 18, 2016 | Permalink

Liane Kupferberg Carter is the author of Ketchup Is My Favorite Vegetable: A Family Grows Up With Autism. This week she continues her exclusive series on celebrating the Jewish holidays in a family with special needs as a Visiting Scribe guest contributor.

Each Passover, I struggle with the Hagaddah passage about the Four Sons. We’re told there is the Wise Child, the Simple, the Wicked, and the Silent. I know they’re meant to be symbolic, but would you want someone labeling your child as the smart one, the stupid one, the trouble-maker, or the one who has nothing to say?

Admittedly I’m sensitive when it comes to labeling children. My son Mickey has special needs. People have been labeling him for more than twenty years. Mickey is autistic. He has epilepsy. He didn’t learn to speak for a long time. So you can see why I cringe when we read that bit about the Simple or the Silent Child. My son is disabled, but he’s not silent, and he’s certainly not simple—in fact he is astonishingly complex: he makes profound observations, and asks startling questions. When his brother Jonathan first left for college, Mickey was disconsolate. “My brother doesn’t live here anymore? We’re divorced?” he asked.

When Mickey was small and the diagnosis new and painful, I used to feel as if other, “typical” families were feasting in a great restaurant, while my family of four stood outside, our noses pressed longingly to the window. With time, that feeling abated, but it resurfaces every Passover, when I think about how many special needs families don’t feel welcome at the table, their synagogue, or in their community.

At the seder, we fill a cup with wine for the prophet Elijah. We set him a place at the table. Elijah, we’re told, roams the earth disguised as a stranger, so during the feast we open the front door. If we should find a stranger on the doorstep, we are told to welcome him in kindly. It’s a metaphor for inclusion: everyone deserves a place at the table.

Mickey loves Passover so much he talks about it for months before. He doesn’t need a calendar—for him, family celebrations and holidays punctuate the passing of the year. At the seder, he’s proud when it’s his turn to read aloud from the Haggadah. He scarfs down the matzo, the only traditional Passover food he tolerates. He’ll peek to see where the we’ve hidden the afikoman. His diet is limited, so my thoughtful sister-in-law always puts aside the plain meatballs he likes; his cousin Lauren bakes his favorite flourless brownies for him.

Still, Mickey has yet to make it through an entire seder. There’s too much noise, and too many people. The spirited singing drives him from the room. “I’m out of here!” he announces. He retreats to a sofa, fits headphones over his ears, and cocoons with his iPad.

I used to be embarrassed about that behavior. But one of the things we say in the autism community is, “Behavior is communication.” When he isolates himself, he’s letting us know his sensory system is overloaded, which can trigger a seizure. Fortunately, our family understands, accepts, and accommodates. His place at the table is secure.

I like to remind myself that Moses, the hero of the Passover story, had special needs, too. He stuttered. Sometimes he needed his brother, Aaron, to speak for him. Each of us, if we live long enough, will probably have special needs of our own. We may need a wheelchair, or a hearing aid, or, like Moses, someone to speak for us. Disability is part of the human condition.

Inclusion isn’t just something to talk about during Jewish Disability Awareness Month in February. Each year, as we end the seder with the words, Next year in Jerusalem, we give voice to the hope that tomorrow will be better. My hope for next year: a place for everyone at the table.

Liane Kupferberg Carter is a nationally-known writer and advocate for the autism community and a co-author of the Autism Speaks Advocacy Took Kit. 

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What Does Purim Mean to My Autistic Son?

Monday, March 21, 2016 | Permalink

Liane Kupferberg Carter is the author of Ketchup Is My Favorite Vegetable: A Family Grows Up With Autism. This week she begins an exclusive series on celebrating the Jewish holidays in a family with special needs as a Visiting Scribe guest contributor on The ProsenPeople.

Purim is one of the many “they tried to kill us, we won, let’s eat” Jewish holidays. But for an autistic child like my son Mickey, Purim is first and foremost a holiday about sensory overload.

It starts with the noise: the raucous Purim spiel; the cacophony of gragers (noisemakers); the booing, howling, hooting, and hissing to drown out Haman’s name during the Megillah reading. Add blazing lights, the pink sugary smell of cotton candy, the bang and clang of carnival games, and the press of a hundred children pushing past him to grab the Dunkin Munchkins. It’s simply too much for an autistic child with a hypervigilant sensory system.

Just as Broadway theaters have been creating sensory-friendly theater experiences for kids on the spectrum, I’d love to see synagogues offer a sensory-friendly Purim. But maybe that’s an oxymoron. What’s Purim without the tumult?

It isn’t that our temple hasn’t tried. In elementary school, Mickey attended a Hebrew school class run by Matan, a nonprofit that advocates for students with special needs to have access to a rich and meaningful Jewish education. Our temple opened the Purim carnival to Matan students an hour early, so that they might enjoy the food and games in a less hectic environment. Even though it was in his beloved temple, the familiar common room packed with carnival games and trays of sweets was still a sensory assault to him. It took just ten minutes until he reached his tipping point. “Take me home,” he said. “I’m done.”

Words I’ve learned to heed.

When Mickey was eight years old and his brother Jonathan thirteen, we flew to Arizona for their cousin’s bat mitzvah. Mickey fidgeted but managed to sit through the service, even singing along to familiar songs. But when we moved to the banquet room, we slammed up against a wall of thrumming music and flashing lights. Mickey flung himself to the floor and clutched his hands over his ears. People stared. We scooped him up and took him back to our hotel room.

Having a child with these sensitivities opened a window into myself. As a kid, I also hated crowded rooms. Strobe lights. Roller coasters. I thought it was a character flaw, that I was simply too timid. I didn’t realize it was just the way I was wired—the way my son is wired, too.

Still, I wish he could enjoy Purim the way I did as a child. I remember the joy I felt dressing up as Queen Esther for our temple’s carnival. I wore a sequined, neon green costume with gauzy harem pants. I delighted in feeling like a different person. But Mickey doesn’t do costumes. “I hate dressing up,” he says. “I just like normal.”

“I’ve had enough.” He says it adamantly, often when the rest of us are still having fun. For years, I cajoled, reasoned, even bribed: I wanted him to sit longer, stay later, last through the meal. Was that more for my sake than his? Or am I beating myself up too much? It took me a long time to understand that he doesn’t mean to be difficult. He is simply advocating for what he needs.

I believe it’s my job as his parent to expose him to as many new experiences as I can. I want to open the richness of the world to him. When is it okay to push? How hard? When to pull back? It’s an intricate dance. Mickey is twenty-three now, and I am still learning the steps. I can still supply the props—the food, the family, the prayers, the stories—but now the rest is up to him.

After we retreated from the carnival at our temple, a thoughtful neighbor brought him mishloach manot, a Purim basket overflowing with cookies, chocolates, clementines, bottles of grape juice, and a pair of Purim finger puppets. “I love Purim!” he told me.

As I watched how excited he was to go through that basket of goodies, I realized that Purim was whatever Mickey wants to make of it. I don't know what being Jewish means to him. But seeing his pleasure in something as simple as that basket of treats gave me joy. Maybe that’s enough for both of us.

Liane Kupferberg Carter is a nationally-known writer and advocate for the autism community and a co-author of the Autism Speaks Advocacy Took Kit. She will be touring for the 2016 – 2017 season on her book Ketchup Is My Favorite Vegetable through the JBC Network.

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