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Aug 14 2014

After 10 Years, Finally a Diagnosis For My Son

By at 11:46 am

woodlands-sign

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 →

Aug 12 2014

Why Does My Son With Tourettes Have to Fight to be Accepted?

By at 3:32 pm

Walk-for-life

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 →

Jul 8 2014

Five Reasons I’m Sending My Son With Autism to Sleepaway Camp

By at 11:11 am

jana-special-needs-camp

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 →

Jun 26 2014

When You Can’t Recognize Anybody’s Face

By at 10:42 am

playground

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 →

Jun 11 2014

Thank You to The One School That Found a Way to Include My Son

By at 11:48 am

Amit-music-1

“Our entire sixth grade class is going to Six Flags for the end of the year trip.”

A familiar feeling of anxiety overwhelmed me. I wasn’t concerned about the venue. I believe that 11-year-olds deserve plain, simple fun after a year of hard work. I had no concerns for their safety. I am not an overprotective, helicopter parent.

My anxiety stemmed from the fear that the school wouldn’t agree to take my son Amit. Once again, his excitement would be quickly transformed into disappointment, frustration, and anger. Read the rest of this entry →

Apr 30 2014

How My Son Finally Opened Up About His Little Brother With Special Needs

By at 11:25 am

big-bro-of-special-needs

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 29 2014

My Sensory Sensitive Son is Having a Growth Spurt–and It’s Not Easy

By at 1:16 pm

boy-sensory-issues

So my son is going through a growth spurt right now. One way I can tell is that he is eating more food than I eat sometimes. The other way I can tell is that he is totally not in control of his body.

Here’s the thing. J is wonderful. He is often polite (his recent thing is to thank my wife and I for dinner when he likes it). He is very funny (“I’m just being silly Daddy”). He is extremely verbal (particularly with anything relating to trucks, but also with rhyming words). But he also has a bit of SPD, which leads him to being out of control.

SPD, or Sensory Processing Disorder, is a condition in which any of the various sensory systems can be either over or under developed leading children to have inappropriate reactions to a variety of situations. Some kids may be averse to sounds or smells. Others may have trouble with light touches. J has difficulty with what they call “vestibular tracking” (i.e. combining balance and visual stimulants), and he seeks out deep pressure. Often the need for deep pressure leads to “disorganized” behavior and actions that, frankly, we don’t want to happen (i.e. pushing, laying on other people, occasionally biting). Read the rest of this entry →

Apr 24 2014

My Little Larry David Doesn’t Like My “Stop & Chats”

By at 9:58 am

larry-davids

“You know everyone!” I once gushed to my aunt after she exchanged hellos with a familiar face at a Tom Thumb grocery store in Dallas. She shrugged in response. “Well, I’ve lived here a long time.”

That hardly happened where we lived. Los Angeles during the 1980s was easier to navigate, since less traffic compared to today meant the city felt open for exploring. Beach every weekend? Sure! But our lives were a series of anti-local, community-defying tradeoffs. None of my school friends lived nearby. We’d drive miles to go grocery shopping at a higher quality market where we were just as likely to spot Mr. T filling up his cart than someone we actually knew in real life.

Now as an L.A. native, I see people I know around town, and I love it. (We also have great food shopping options in our own neighborhood, thankfully.) Meanwhile, as possibly a bizarre twist of karmic balance, it drives my two boys crazy when I see a friend and stop whatever we’re doing to enjoy a little conversation. “When I was your age, I WISHED that would happen,” I try to explain, this unwarranted commentary falling on deaf ears, naturally. Read the rest of this entry →

Apr 17 2014

The Perfect Way My Daughter Described Her Friend Who Uses a Wheelchair

By at 3:26 pm

wheelchair

This year, at our first night’s seder, my 11-year-old daughter declared her desire to find the afikomen. You see, she informed me, this would be her only chance.

Puzzled, I asked why. After all, we were heading to a friend’s home for the second night, and there would most certainly be an afikomen hunt there, as well.

(Back story: The friends we celebrate Passover with have one son, Josh, who has Cerebral Palsy. I have written about him and my children’s relationship with him before. Our families have been celebrating second seder together for the past few years.) Read the rest of this entry →

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 →

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