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 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 →
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 →
Jul 31 2013
When 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
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 →
May 28 2013
In 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 divorce. Read the rest of this entry →
Apr 23 2013
It 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
While 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.
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 →