Jan 28 2014
My daughter is a 10-year-old living with autism. As I watch both her body and her mind grow, I am hit in many different times and many different ways that my daughter is not a little kid anymore.
Gone is the unsteady toddler on wobbly legs and the silky hair that could be washed with a washcloth. Gone is the little one who at the end of the day would cry a sea of warm tears because she was so tired, but who couldn’t relax enough to fall asleep without my hand stroking her back. Gone is the little child’s whose differences often hid behind chubby cheeks, dimpled elbows, and the world of being a small child.
My daughter is growing very quickly. She’s hit puberty early and even though her capability and maturity levels are consistent with a 7-year-old child, I am having a hard time escaping one simple fact: It won’t be long until my child with autism will soon be an adult with autism. Read the rest of this entry →
Jan 21 2014
I had always envisioned my children growing up feeling the sense of “Jewishness” that was so special to me in my own childhood, so we started our son at a Jewish preschool at the age of 2.
But it quickly became clear that he simply couldn’t function in a classroom and was getting nothing out of school. Our journey, which eventually led to an autism spectrum diagnosis, brought with it a roller coaster of emotions and never-ending to-do lists, and dealing with all of that required me to push aside my disappointment about giving up his Jewish preschool. It had become obvious that we had to send him to a special education program to provide the hours of intensive therapy he needed. So without so much as a glance back we forged ahead on this path, and amazingly after two years he had progressed so far that he was almost unrecognizable from the 2-year-old he was before it all started.
We found ourselves at the beginning of this current school year, his last year of preschool, with some decisions to make. The special education preschool program in our new school district, as remarkable as it is, did not provide enough hours of school for him with only four short afternoons a week. We knew we should consider a mainstream preschool as a supplement to his special needs program. He would benefit socially from being around “typical” peers, but we couldn’t help but wonder if he was really ready for it. Read the rest of this entry →
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 →