Jul 8 2014
Typical parents are rarely surprised when I tell them Benjamin goes to sleepaway camp–at least not after I clarify that it’s a camp catering specifically to children with special needs.
“It’s really structured,” I’ll explain. “Lots of staff members have special ed degrees and work in the field during the year, and there’s a really high counselor-to-camper ratio.”
While the special ed speak convinces most people (or bores them into believing) that I know exactly what I’m talking about, there is one population I’m not fooling: fellow autism parents. Read the rest of this entry →
Apr 30 2014
The first time I remember talking to Oscar about his younger brother Saul’s special needs, he couldn’t have been more than 5 years old. Definitely still in preschool. There was something–though I can’t remember exactly what–that Oscar thought Saul would like and he said, “Saul is going to do this!” and started flapping his hands and bouncing up and down. I lost it. I couldn’t believe my sweet little boy was making fun of his younger brother who has Fragile X, which is a genetic syndrome and the cause of intellectual disabilities that can include learning problems, autism, anxiety, sensory, and behavioral issues.
As a parent, my biggest fear was that Saul was going to be subject to a lifetime of cruelty from others who didn’t understand his condition, but I didn’t think this cruelty would begin in our own home. I yelled at Oscar–I can’t recall exactly I said–and his face fell. He said, “But Saul will be happy and that’s what he does when he’s happy.” I realized then that he wasn’t mocking his little brother. He was simply acting out the happiness he anticipated from Saul. And I had yelled at him for it. When I agonize over all of the mistakes I’ve made as a mother to three children, this incident always cracks my top 10.
Saul was diagnosed on the first night of Hanukkah in 2007. He was just 1 1/2 at the time. And in the six years since, our family’s life has, often out of necessity, revolved around Saul’s treatment and care–from countless early intervention classes to a variety of therapies to special schools. There are places and things we can’t do together as a family. And at home, Saul’s needs sometimes seem to take priority ahead of those of his “typical” siblings–his twin sister Beatrice and Oscar. Read the rest of this entry →
Apr 2 2014
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
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
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
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 →
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.
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
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 →