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Sep 11 2013

My Son Had a Rosh Hashanah Meltdown but That’s Not What I Remember

By at 7:43 pm

tallitThe High Holy Days are difficult for everyone. The services are long. The liturgy relies heavily on theological notions that are often in conflict with our modern day beliefs. There is a lot of Hebrew. Unfamiliar melodies. For most of us, however, we are able to overcome our discomfort and even, for some of us, use it at a spiritual tool.

For kids like my son Ben, who is on the autism spectrum, these are just a few of the obstacles. Bright lights. Loud sound system. Uncomfortable seats. And throngs of people. These can make an already overwhelming experience seem just unbearable. And then we come to the clothes. It is expected that we dress appropriately for shul. Ben, who has some sensory sensitivities, comes unglued when forced to wear anything that “hurts.”

While it was the act of getting dressed that triggered Ben’s first meltdown, we knew that it was fueled by the anxiety of all of the above. Read the rest of this entry →

Aug 29 2013

I Yelled At My Autistic Daughter

By at 10:05 am

woman yelling close upMy daughter had a colossal meltdown last night and I handled it badly.

My patience gave way after 40 minutes of defiance and my tone went from neutral to impatient, agitated and finally, about three-quarters of the way through, to angry.

There, I said it; I yelled at my autistic daughter.

I am a lousy mother, right? Who yells at their special needs kid?

Apparently, I do.  Read the rest of this entry →

Jul 31 2013

When My Daughter is More Than Her Autism

By at 9:56 am

merry-go-roundWhen you are raising a child with special needs, it often feels like the diagnosis takes over your whole life.  My daughter has autism and there isn’t a day and often not an hour or a minute where autism doesn’t occupy center stage in our lives.

It’s there, everywhere you go,  throwing up hurdles and roadblocks, preventing joy, happiness, and discovery and sending your senses into overdrive at the drop of a hat.  In those brief moments that you are not dealing with it, you are likely talking someone’s ear off about it or blogging about it.

For myself I find that any given day with my daughter involves a lot of strategizing on my part.  I spend my day anticipating her day, trying to foresee where the trouble spots might be, what might be difficult for her and what might send her into sensory and/or emotional overload.  It involves thinking ahead a lot about where we are going, anticipating where the hurdles might be, and trying to find a way to avoid them or at least anticipate them so I can prepare her for it and try to minimize the chance that she will be overstimulated enough to lose control of her emotions and behavior and sink into meltdown territory.    Read the rest of this entry →

May 29 2013

We Can’t Talk About God, We’re too Busy with Autism

By at 10:03 am

knife and forkThis post is part of our month-long series featuring different ways that parents of various religions have talked to their kids about God.

A week or so ago I was contacted by one of Kveller’s editors telling me about their month-long series on talking to your children about God and was asked if I wanted to perhaps write a piece for it. Being the mom of a child on the autistic spectrum might add an interesting voice to the series. “Sure, I’d love to.”

Hold on a second.

I’ve never talked to my daughter about God.

Why haven’t I done that?  Read the rest of this entry →

May 28 2013

There’s an 80% Chance My Marriage Will End in Divorce

By at 10:39 am

decree of divorceIn our world there are statistics all around us. No where is that more true than in the world of autism.

There is the whole one in 88 kids are diagnosed on the autism spectrum, which is the big ugly, awful stat but there are loads of little stats, particularly if you start investigating treatment options, dietary options, and so forth.

The one that hit me the most when my daughter was diagnosed with autism was this one: 80 percent of marriages where there is a child with autism end in divorceRead the rest of this entry →

Apr 23 2013

The Other Kids Don’t Want to Play with My Daughter

By at 3:52 pm

empty swings at playgroundIt happened again today.

My daughter went outside to the playground in front of our house and within five minutes the kids that were out there headed for the hills.

It’s happened before, many times.

The scene usually plays out like this. My daughter looks out our front window and sees kids at the playground across the street from our house. She furiously rushes to me and asks if she can go play outside. After a good five minutes of her running around aimlessly in excitement and me running after her telling her to put her shoes and a jacket on, she sets off outside. She gets to the playground and in her excited state runs and flaps her arms, doesn’t listen to what is going on or starts talking a blue streak about her stuffed animals or what we are having for dinner and even when she does listen, she often cannot follow what the other kids are doing.   Read the rest of this entry →

Apr 11 2013

My Autistic Daughter is Going Through Puberty

By at 5:01 pm

pubertyWhile the world of autism is talking, blogging, and arguing about Autism Awareness Month, over here we have been dealing with another kind of awareness. One in which autism, like with a lot of other things, brings challenges, not just to Maya, but to me as her mom.

Puberty.

A few months ago I wrote a post about how I and everyone around me were noticing changes in my daughter and my fears about how to talk about it with her.  Read the rest of this entry →

Mar 14 2013

How I Prepare My Autistic Son for Passover

By at 9:54 am
grilled cheese

No grilled cheese for eight days?

Every year around this time I come down with an acute form of memory loss. I call it Passover Brain. With just two weeks to go before the first Seder, the panic sets in and suddenly it’s as if I’m observing the holiday for the very first time.

Where did I store the seder plate? How do I get those crumbs out from way underneath the oven? Does anyone make haroset safe for my nut-allergic kids? And why–why–is the only thing in my “Pesach” folder a 3-year-old shopping list? Read the rest of this entry →

Feb 20 2013

Ten Things I Wish Someone Told Me About Parenting a Child with Special Needs

By at 9:47 am
liane kupferberg carter and son

Liane and her son.

As part of our month-long series dedicated to Jewish Disability Awareness Month, Liane shares advice for those just starting out on the special needs journey.

I’m a proud member of a tribe. No, not just that tribe. I mean the tribe of special needs parents. There’s no way you’d spot us in a crowd. But even without a secret handshake, special needs parents manage to find each other. Maybe it’s that unmistakable look of exhaustion and resolve many of us wear. Whatever it is, I’ve been part of this particular tribe for 20 years. Read the rest of this entry →

Feb 13 2013

For My Son on the Autistic Spectrum, Where Does He Fit into the Jewish Community?

By at 9:45 am
jewish day school

Jewish day school. Photo credit: Clive Moss

As part of our month-long series dedicated to Jewish Disability Awareness Month, Benay shares her hopes and concerns about her son’s future Jewish education.

I watch my 5-year-old at Jr. Congregation on Shabbat, and I am amazed. Here, in a small room with children, songs, and a teacher he knows and loves, he is comfortable and in his element. He participates, and more than that, he wants to be a leader, a teacher, and a student. He runs onto the bimah in the sanctuary for Adon Olam, and he thinks he’s leading the congregation.

Witnessing my son’s emphatic participation is huge. He was first diagnosed as being on the autistic spectrum at 2 years old. Thanks to my husband and sisters, who insisted he be evaluated on the early side, he has benefited from four years of intensive therapy with dedicated and talented therapists and teachers and has made astounding strides. Read the rest of this entry →

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