AUTISM IS NOT AS 'FASCINATING' AS YOU MIGHT THINK

Some people have a natural affinity towards special needs individuals. They seem to gravitate towards them, and spend many of their waking hours doing chesed (good deeds) for special needs families, interacting with the disabled naturally, and are well-known within the special needs circles. Over the past year or two I've gotten to know several such families and I am constantly overawed by the sacrifices they make and the unconditional devotion and acceptance they portray.

I was never that type. I was not a starer or a curious questioner of disabled individuals; I treated them with respect and interest. I never felt uncomfortable around people with special needs, but I wasn't particularly involved with them.

Growing up, I knew of two types of congenital disabilities: Cerebral Palsy and Down Syndrome. Of course, there was mental retardation too, but when I was a kid, 'retarded' was a term often used as a slang word for 'crazy', 'unbelievable', 'ridiculous', kind of similar to the slang word 'sick' that is used today. "Retardo" was a derogatory name that kids would called each other. Autism wasn't on my radar.



My first 'exposure' to autism came in the form of various media, when I was in my late teens, after I had graduated high school. I come from a family of voracious readers, and we bought virtually every Judaica book as soon as it was published. In 1994 I read The journey with Joshua, which was my very first introduction into the world of autism. I was extremely impressed by this incredible woman, who chose to educate her son at home when she couldn't find an appropriate framework for him. This was the first time I read about this newfangled form of cognitive disability and it was rather intriguing. The only type of mental retardation I was familiar with was the one that accompanied Down Syndrome. A normal looking person and yet so profoundly disabled? That was new to me.

That same year, a new kind of kosher entertainment was introduced in my neighborhood. Since we don't watch movies, 'slide shows' became a popular entertainment form, produced by women for women and screened on special occasions like Succos and Pesach. I attended my first 'slides' shortly before I got married, and went to a few more during my first year of marriage. I wasn't particularly entranced. I hated seeing still pictures on a screen, accompanied by dialogue and loud sound effects. In general, I don't enjoy action or drama in a performance; I like comedy or dramedy. Sure, I enjoy a good cry, but I get very overtaken by the emotion in moving films and the images and sound effects accompany me for a long time and echo in my head. But the very first slide production that I saw was about an autistic child. The child was locked in her own world, screaming and screaming, never communicating with anyone, and the family was at a loss. One day, this girl's sister started imitating what she was doing, and suddenly magically opened up and began connecting with others and calming down from her tantrums. The narrator explained that this was a brand new educational method called "ABA" and it was a groundbreaking advance in breaching the steel walls that autistic children are surrounded with.

I left that film impressed and intrigued, and started researching what autism was about. It was confusing to me; what did it mean that these kids were 'in their own world'? Did they see and hear things we didn't? Were they truly in some alternate universe? And did simply imitating such a child bring them out of their shell?

Now i know that the 'imitating' method is not ABA but Son-Rise. But that film gave me the background to understand autism a little bit.

Shortly afterwards,  Shma Koleinu opened in New York and I was really happy for the families of autistic children. Finally, a Jewish school for them! It all sounded so wonderful. Little did I know...

Alongside the voracious reading in my family came a love for music. Jewish music, in specific, "Chasidic" music as it's popularly known. After I got married I purchased many new cds as they were released. In 1998 I bought HASC Unforgettable Moments Vol. 2. As a teen we had some HASC videos from time to time and I was well versed in all of them and amazed at the incredible work HASCdoes for special needs children. On that particular CD, a charming young man named Mikey Butler (obm - he passed away several years ago after battling cystic fibrosis for many years) gave a moving, funny speech about his brother, Uri Butler. I'll never forget those chilling words. "URI IS AUTISTIC." And he went on to describe how difficult it is to live with an autistic sibling. Listen to the short preview here:  "They don't make eye contact. They're frequently retarded. Sometimes they're violent. It's really difficult on the parents and siblings." He spoke for four minutes about his brother and how much Camp HASC means to him. It was a real eye-opener into the lives of families of such kids. I always wondered how such families managed.

Never, ever did I dream that I would eventually find out just exactly how those families manage. Or more accurately, how they barely manage not to fall apart.

Over the years, some of my relatives married into families who had autistic kids. I remember one relative commenting how bored she was when she visited her in laws for Shabbos, because the only person she had for company was her autistic 12-year-old brother-in-law and it made her uncomfortable. Another relative spoke with admiration about her sister-in-law who bravely raised an autistic son into adulthood while outwardly maintaining her equilibrium.

I had never met an autistic individual in my life, but I knew one thing: It was one of the most heartbreaking experiences a parent can go through, watching their precious child losing his or her abilities and becoming a closed-in shell.

During my battle with infertility, I often wondered, if given the chance to have no children, or  a special needs child, which would I choose? Somehow, the automatic answer in my mind was the former, not the latter.

When Dovi was about a year old, I once stood over his crib emotionally and wondered to myself, how a parent - especially one who waited for a long time for children - was able to handle something as terrible as having their child develop autism. I would not be able to survive it, I thought. Suppose this happened to us, G-d Forbid? Suppose Dovi 'became' autistic? Would I be able to handle it? I hope I will never be tested.

I really don't know why I had this premonition. But it was there.

So the little bit of exposure I had to autism - the books, the films, the HASC DVDs.... none of that remotely prepared me for the emotional, mental, physical, and financial drain that parenting a child with autism truly is.

QUESTION OF THE POST, IF YOU'D LIKE: What was your first introduction to autism? How did you 'hear' about this phenomenon, and what was it like when you faced it in real life?

LINKS TO  MEDIA REFERENCED IN THIS ENTRY:


   

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