Dec 3 2013
My 17-year-old son, Ido, is on a mission to change the world for people with severe autism. He is a tireless advocate, blogger, frequent presenter at universities and autism conferences, and the author of a book about autism which has even been assigned in graduate level university classes.
As Ido writes in the introduction to his blog, “I am an autistic guy with a message. I spent the first half of my life completely trapped in silence. The second, on becoming a free soul. I had to fight to get an education. Now I am a regular education student. I communicate by typing on an iPad or a letter board. My book, Ido in Autismland: Climbing Out of Autism’s Silent Prison, is an autism diary, telling the story of my symptoms, education, and journey into communication. I hope to help other autistic people find a way out of their silence too.”
Ido seeks to educate the professionals in the autism field to understand severe, nonverbal autism better and to provide children with a richer, more appropriate education and a true means to communication. He has become a source of hope for parents of children with autism and for people with autism as well. As a family, it has been a remarkable journey of triumph over challenges, even as Ido works daily to face new goals and struggles.
Kveller asked that I interview Ido about his life living with autism. His answers were all typed letter by letter on a keyboard. Read the rest of this entry →
Nov 8 2013
“I want Shabbat,” my son Benjamin proclaimed on a recent Saturday afternoon as the guests we’d invited over for lunch milled about the house. I looked up from the salad I was throwing together, certain I’d misunderstood him. Shabbat is something we do every week in our house, yet something Benjamin, now 10 years old, had never once acknowledged. But then he said it again.
Benjamin has autism, and with his variation of the disorder comes serious language impairments that make it insanely difficult for him to do something that most of us take for granted; to identify the thoughts he wants to express, find the corresponding words, and then actually put those words out into the world. Communicating is an Everest-scaling level challenge for him, and because of that, Benjamin has become quite adept at paring it down to the basics.
And we, in turn, have become quite adept at interpreting the collection of compact lines he has curated over the years in order to get his needs met. More difficult is decoding the subtext, although we have become increasingly skilled at that part, too. Read the rest of this entry →
Oct 31 2013
Erika Christensen and Sam Jaeger, who play Julia and Joel.
To my twelve readers:
Here’s the short of it: the last two episodes of Parenthood bored me a little (though I am still 100% a supporter of this show). So in this recap, I’m going to ignore the filler (Crosby and Adam signing some ridiculous band to their new label, Adam seeking out a big campaign donation for Kristina from a fake rapper named Mistah R.A.Y, etc etc) and focus on the storylines I found interesting/believable. (The interesting/believable criteria gives me license to ignore the Amber-getting-married-to-clearly-not-a-good-choice-Ryan. I will also willfully ignore the Grandpa Zeek-working-on-his-car-with-grandson-Victor-while-also-simultaneously-teaching-him-to-read storyline, because while I love Coach as much as the next gal, I think this material was worth one scene, tops, and not a lot of space in this blog post.
If you were watching closely, you know there were really just one or two incredible scenes in the last two episodes that felt true to life (at least life as a partnered-up parent), and truth is what I’m always hunting when I watch this show. (That, and an excuse to cry.) So here goes: Read the rest of this entry →
Oct 15 2013
It’s been nearly six years since my daughter was diagnosed with autism. Like many other parents who hear their children have life-long challenges ahead of them, my husband and I went through the seven stages of grief, but I also Googled. Furiously.
While I found no shortage of information, what I found by and large more than anything was that “early intervention” was key to improving the symptoms of autism (personally, I hate calling them behaviors because that makes it sound like it is something which can be controlled). Most websites I consulted say a version of the same thing:
“Early intervention is your child’s best hope for the future.” Getting critical therapy before the ages of 4 or 5 was key to helping them improve the core behavioral symptoms of autism (there’s that word again). I signed up for loads of parental forums on the topic and heard the word I most wanted to hear: cure. Early intervention, many parents said, could cure my daughter of autism.
My daughter had just turned 5 when she was diagnosed, so not only was she on the autism spectrum, but we had missed the cutoff age for her best hope for the future.
We were screwed. Read the rest of this entry →
Oct 7 2013
All the parenting news you probably didn’t have time to read this week.
- Wet Seal has proved to be a pretty awesome company. After Karrie Brown, a 17-year-old girl with Down syndrome, received compliments for her fashionable style, friends in her community launched a Facebook page in support of Karrie modeling for the company. Turns out Wet Seal responded to the page and flew Karrie and her mother out for a photo shoot in LA where she danced to Bieber tunes and modeled clothing. (XO Jane)
- In more negligent news, a high-end daycare center in Brooklyn, Williamsburg Northside Preschool, lost a child in the park last week when teachers failed to count the group correctly. Yikes. (DNAinfo)
- “Parenthood, like war, is a state where it’s impossible to be moral,”–just one great line from a piece on ethical parenting in New York Magazine. Great read for parents who would move mountains for their children, if only they could. (NY Mag)
- A new study in the New York Times provides hard evidence of a continuing bias against women in the sciences. Surprisingly and unfortunately, women are just as biased as their male counterparts. (NY Times)
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Sep 11 2013
The 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
My 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 →
Aug 19 2013
Last month, at the very last minute, I finally sent off my children’s application to our synagogue’s Hebrew school. For the second time.
Three years ago when it was time to sign up our oldest daughter for Hebrew school, I eagerly filled out the paperwork. My husband and I love our funky, spirited, and opinionated Reconstructionist synagogue, and I thought I found a community that would provide a Jewish connection and community for the entire family. Let the Jewish learning begin! They were starting a new family-based, Shabbat-based Hebrew school program. We would be in on the ground floor, as they say, and start my daughter off on an amazing journey of Jewish learning.
But it did not quite work out that way. Read the rest of this entry →
Jul 11 2013
Summer vacation is upon us.
All over Facebook I see statuses of parents dealing with school being out. Grateful posts about not having to pack lunches quickly turn into posts about the hassles of shlepping kids to baseball practice or kids being underfoot saying, “I’m bored” 600 times a day and in between happy vacation photos and day trips and amusements parks.
In other words, the stuff of life. Or at least the stuff of life when you are a parent.
As the parent of a special needs child, I recognize these irritations but honestly, I also do my share of eye rolling when I read stuff like this. It’s tough not to shake my head when some parents’ biggest problems are that they cannot decide how many pairs of flowered underpants their kids need to pack to go to Jewish sleep-away camp for two weeks. It sometimes makes me cringe when I read stuff like this, not just because I think of friends who struggle financially and aren’t in the position to be able to pay to send their child to be cared for by others for two weeks. Or those, like me, whose kids just can’t participate in things like summer camp, because their needs are so specialized and they just need more attention and care than they can get in most summer programs. Read the rest of this entry →
May 29 2013
This 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 →