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Apr 2 2014

As My Son Turns 18, Looking Back On a Life With Autism

By at 10:20 am

hannah-brown

Today is World Autism Awareness Day. To learn more, click here.

When I turned 18, I had my first legal drink–a strawberry daiquiri–at Windows on the World, the bar/restaurant that was located on the top floor of the World Trade Center.

When my oldest son, Danny, turns 18 next week, we will take a train from Jerusalem to Haifa, and then we will ride the Carmelit subway for a good part of the day.

Danny loves trains and has ever since he was diagnosed with autism when he was 3. In addition to marking his birthday with a cake in the evening, his father and I will become his legal guardians that day. When he was born, there was no World Autism Awareness Day, but it’s hard not to see the irony in the fact that April 2 is just six days before his birthday. Read the rest of this entry →

Feb 27 2014

After Raising a Son With Severe Autism, I Have Redefined “Normal”

By at 12:52 pm
elaine-and-neil

Courtesy of Elaine Hall

 

As part of our month-long series dedicated to Jewish Disability Awareness Month, Elaine shares her journey of raising a son with severe autism, from toddlerhood through bar mitzvah age to where he’s at now, at almost 20 years old.

Our tradition dictates: “Be fruitful and multiply.” I couldn’t do either. Each year at Rosh Hashanah, where we read Hannah’s story of her inability to give birth, I cried Hannah’s tears. I prayed, “If you give me a child, I will give him back to you, to serve you all his days.” My prayer was finally answered when I adopted my son from an orphanage in Russia.

I had been raised in a religious ”Conservadox” family in a non-Jewish area of Southern Maryland and had felt different all my life. Now, I just wanted normal. I looked forward to returning to LA and beginning a normal life: car pool, little league, Tot Shabbat. On a blissful flight home across many continents, I had no idea what lay ahead of us.

Reality set in quickly. We discovered that our toddler son had liver toxicity, parasites, malnutrition, and he was spiking fevers of 105. He stared at his hands for hours at a time, spun around in circles, opened/closed and banged cabinet doors, made no eye contact, couldn’t speak, tantrumed for hours, and didn’t sleep. Read the rest of this entry →

Feb 26 2014

Facebook “Likes” Are Great, But How Can We Help Children like Colin Make Friends?

By at 11:42 am

colin2

I have been watching the Happy Birthday Colin movement on Facebook for the past couple of weeks. I have been both fascinated and touched by the outpouring of compassion and generosity that seemingly millions of strangers have expressed towards Colin, a boy with special needs who has trouble making friends. After Colin told his mom not to bother with a birthday party since he doesn’t have any friends, his mother, feeling awful, took to social media, built a Facebook page for his birthday, and shared it, hoping some messages would help to lift the boy’s spirits on his birthday.

The thing has gone completely viral; more than 2 million people have liked the page and offered messages. Based on the photos that Colin’s mother posts every few days of them picking up what looks like carloads of birthday cards and gifts that are arriving at Colin’s PO Box, it looks like Colin will have the surprise of a lifetime on his birthday (and he will probably be opening cards every day until his next birthday from the looks of it).

It’s really been great to see that people recognize the need to make every kid feel good on their birthday and to reach out to this boy. Read the rest of this entry →

Feb 6 2014

My Child With Autism is Going to Jewish Day School (And It’s Working!)

By at 2:11 pm

classroom

As part of our month-long series dedicated to Jewish Disability Awareness Month, Benay shares her success at mainstreaming her son on the autism spectrum into a Jewish day school classroom.

Our son got his first siddur (prayer book) last week, and it was–in a word–amazing. A year ago, I never would have predicted he would be up on that stage. In fact, I was convinced of just the opposite–that my son would not be attending Jewish day school at all, let alone participating in the first grade siddur ceremony. I was so convinced, I blogged about how unlikely it would be for he and our new local community Jewish day school to be a match.

I’ve never been so happy to say I was wrong.

Our son was diagnosed as being on the Autistic spectrum when he was 2 years old. Thanks to an incredible team of therapists providing, among other things, speech and occupational therapy, he made amazing gains. But still, when it came time for kindergarten, he still lacked age-appropriate social and play skills, he avoided trying new things, and he struggled to appropriately express and temper his emotions. So no one said we should consider Jewish day school. Nor did anyone recommend we consider a mainstream classroom. Instead, we enrolled him in a public school program where he received intensive speech and occupational therapy in a self-contained classroom, while spending increasing periods of time in a mainstream classroom. It was a wonderful program, and three-quarters of the way through the year, he was socializing with his peers, not tantruming, and as a result, spending nearly all day in the mainstream classroom. Read the rest of this entry →

Jewish Disability Awareness Month: Let’s Talk About Special Needs Education

By at 11:22 am

jdam copy

February is officially Jewish Disability Awareness Month (JDAM), and we’re happy to partner again with Matan to run a special series on Kveller to highlight the challenges, successes, and everything in between that comes with raising a child with special needs.

Through advocacy, education, and training opportunities, Matan empowers the Jewish community to include children with special needs.

Finding a school that is a good match for a child with special needs can be a monumental task, so this year, we’ll devote this series to all things education. Let’s talk Hebrew school, day school, early childhood programs, inclusion programs, mainstreaming, and special education. Every Thursday in February, we’ll feature a different voice from the special needs community, so be sure to check back in each week.

matan logo

We’ll kick things off later today with an account by Benay Josselson, who–despite earlier predictions–successfully mainstreamed her son into a Jewish day school environment, so keep your eyes peeled and stick with us all month.

Jan 28 2014

What Happens When My Child with Autism Becomes an Adult with Autism?

By at 2:50 pm

uncertainty ahead sign

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

A Second Chance at Jewish Preschool for My Son with Special Needs

By at 10:01 am

preshool

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

Interview with Interesting Jews: Ido Kedar, 17-Year-Old Author of “Ido in Autismland”

By at 12:09 pm

ido and tracy keder

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

Friday Night: What Does “I Want Shabbat” Mean in Autism Speak?

By at 11:47 am

cut slices of challah

“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

I Missed the Autism Early Intervention Boat & That Might Have Been a Good Thing

By at 4:01 pm

autism definition in dictionary

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 →

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