Earlier this year, Zimra Vigoda wrote on Kveller about making the excruciating decision to have her son’s leg amputated and it went viral. She’s been keeping us posted on his incredible journey and this is her latest update.
Summer came and summer went. It’s been more than four months since my son Amit’s amputation surgery at the incredible Shriners Hospital for Children in Northern California and he is still in the depth of rehabilitation.
Amit’s journey from the moment he was born until today has been extraordinary. Born with a rare orthopedic condition, we have had the fortune of connecting with many wonderful individuals and organizations all over the world in an attempt to ease his pain and live his life to the fullest. Read the rest of this entry →
I’ll be honest: I used to generally try to avoid kids with special needs if I could. Aside from the awkwardness of not knowing how to react or interact, I also failed to understand how families of kids with severe disabilities stayed sane. Feeding, dressing, washing, and changing older kids’ diapers was not my idea of a good time, and I didn’t know how they did it.
Then I had a kid of my own. We didn’t realize it when Moishy was born, but during routine testing when he was 3 months old, they told us that his head was not growing, among other issues, and further testing was necessary. This news sent us on a crazy whirlwind of doctors, hospitals, cat scans, x-rays, and more. Eventually the diagnosis was clear: Our beautiful boy had cerebral palsy and microcephaly.
I looked myself in the mirror and realized that I had to change. Now I had my very own child with special needs. Avoidance was no longer an option. Read the rest of this entry →
Jewish memories are made of this: sneaking out with my bunkmates for a thrilling nighttime swim. Israeli dancing on the lawn in the sunshine before lunch. Singing the birkat hamazon with gusto after dinner, concocting elaborately goofy skits for the talent show, playing friendly pickup games of GaGa, and sending a “Secret Shabbat-O-Gram” to my crush in Tent Gimel. Much more than the hours spent in synagogue or in religious school, I can directly trace my continued connection to Judaism to the unforgettable summers I spent at Camp Ramah in California. As it turns out, Ramah would play an even more crucial role for my son Nathan, who was born 14 years ago with Down syndrome.
Like many parents of children with disabilities, we have long struggled with keeping Nathan connected to our Jewish community. He enrolled in religious school a few times over the years, but it was never very successful. Following the Hebrew lessons was challenging, especially as he was still struggling to read and write English. When he tried to join groups of kids on the playground, they told him to stop following them around. Another year, his class spent months developing a Purim play to be performed for the whole congregation–finally an activity Nathan, an exuberant, natural-born entertainer, could excel in! I waited eagerly in the audience all evening only to discover that his sole role was to silently hold up an “applause” sign at the end–the only work-around his teacher could think of for his perceived inability to memorize lines from a script like the other kids. Reluctantly, we had to conclude that Nathan wasn’t getting much out of the experience, and we stopped sending him. Read the rest of this entry →
As a kid, I used to look forward to standardized testing days. For us, it was the CTBS tests, and it meant a day or two of testing and playing board games and eating snacks with our friends when the testing was over. It was a welcome change to the routine of school. It came and went, and at some point I’m sure our parents got the results in the mail. I have no idea.
Anyone with a child in public school now knows that the carefree testing situation is a thing of the past, much like the slap bracelets and Hyper-colored shirts we used to wear.
Last year my third grader, Joey, who was recently diagnosed with a language processing issue, went from a kid who loved school and felt smart, to a kid who was terrified of failing the FCAT and called himself stupid on a daily basis. Unfortunately for Joey, the major skills that the FCAT tested were being able to inference, pick out a main idea, and answer multiple-choice questions, the very skills he struggles with. Read the rest of this entry →
For the past four summers, Kaspar has been a camper at Ramah Outdoor Adventure (ROA) in the Colorado Rockies. Kaspar has participated in ROA’s Tikvah Program for campers with disabilities, both as a participant in the Amitzim edah (division) for campers with disabilities and, most recently, as part of the camp’s inclusion program.
Ramah Outdoor Adventure has become her second home and, according to her parents, has been a big part of her everyday happiness and success. Kaspar hopes someday to become a member of ROA’s tzevet susim (“horse staff”). Below is her take on life at Ramah Outdoor Adventure.
Four summers. Four summers bursting with the harmony of cycles. Every year, the drive up, and up, and up. That in itself is enough to break some spirits.
But there it is: the homecoming. The cheering, the screaming of names. If you are a returning camper, you are passed around, admired, and soon bear the mark of a hundred dirt-encrusted hugs. Newbies are taken in, enveloped in a new universe that welcomes you with every ventricle of its beating heart. Read the rest of this entry →
My son Joey is turning 10 this fall. His development has been anything but normal.
Since Joey was 18 months old, we have seen countless professionals who have attempted to evaluate and diagnose him. None of the doctors, therapists, psychologists, or teachers were ever able to satisfactorily define Joey’s behavior. I often wondered if he was autistic, but that didn’t totally fit. He also exhibits a lot of Asperger’s characteristics, but again, not a complete match.
Allow me a moment to give you an idea of what I’m talking about: Read the rest of this entry →
At my son’s friend’s middle school, a student came down with leukemia after fall semester. Fortunately, he went into remission in spring and was able to return to school. All the students were called to an assembly before he returned to explain why this student would be without hair, what had happened to him, and how they could best make him feel comfortable and assist him with the transition back into school. The school also planned a walk to raise money for childhood leukemia.
This boy walked into school and was immediately accepted. This is the model for which we should strive for all of our children facing any kind of health issue.
Over a year ago, my family faced a frightening medical situation. Almost overnight it seemed my 11-year-old son’s body started to shake and convulse, his speech became slurred at times, he started to repeat curse words over and over, and his body made odd movements and noises. Read the rest of this entry →
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 →
I come from a long line of people who have great difficulty recognizing faces.
The technical term for this is prosopagnosia, and I don’t have a full-blown case, I can recognize people I know well. That said, I’ve definitely failed to recognize my first cousin in an elevator, I have been known to say, “Hi, Shabbat Shalom, my name is Amanda. What’s your name?” to the same people in shul many, many, times, and I was very upset to be voted down in my desire to have everyone at my wedding wear a name tag.
My husband functions as my seeing-eye human, trying to clue me into who people are so I can interact with them normally. Before I met him, I would email pictures of the guys I had gone on a date with to my best friend in Jerusalem, who would email me back a prose description of them so I could attempt to identify them on our second dates. “So and so has glasses, a beard, is very skinny, and has blue eyes,” I would think, over and over again, scanning the sea of pedestrians for a fellow I had last talked to in person for three hours and with whom I planned to have dinner. If they shaved or wore contacts, I was out of luck. Read the rest of this entry →