agony of autism | Autism PDD

This was a beautiful piece of writing. Very touching. Especially the portion about taking the driver's test as that is something I am scared Gage will not be able to do but I have lots of hope and ten more years!
TY for sharing this. I wish I could help people whose children are more severely affected than mine, such as watching them so they can go for a coffee and whatnot. But the ones I do know have husbands and way more support than I do, so they don't usually ask or seem like they need me to. I don't know, maybe I could bring it up just in case so they know I am available on occasion.

Caryn, I can totally relate to your message. It is so difficult raising an autistic child. I'm a single mom raising my 20 yr old autistic son. Today was one of the more difficult days. Paul went into a rage, maybe because I was vacuuming my car? and when I came into the house he went ballistic... pulling my hair & headbutting me, punching & clawing at my breasts. It went on for several minutes. I was at his mercy as to when his rage would end. He's 200 lbs, there's no getting away. Afterwards I was a wet, beaten, emotional wreck. How do you go on from something like that? Yet we get up the next day & start all over again. So many people don't know how good they have it.

I too was sad when my son turned 16 & let my mind play the "if he were normal" game. He'd be driving like every other normal 16 yr old kid, working at a fast food joint, have a girl friend, go to college..... I catch myself looking at other guys his age thinking, "that's how Paul would act/dress/sound like". I cried when I had to admit aloud to a judge at the guardianship hearing that my son is incompetent. Geez, I've had 18 years of this damn "autism" word....not like it's a surprise. But saying it into a microphone ...in such a formal atmosphere...no one there to give me support..... that stabbed me like a knife.

Well, I just wanted to let you know ..you are not alone. ~ Peggy

Thank you for sharing, this was very nice and well written.

I cant imagine losing a child and reading this just puts so much of this crazy world into perspective and makes me feel very blessed and lucky right now:) Thanks for sharing:)

http://www.madison.com/wsj/home/column/index.php?ntid=201129 &ntpid=2

The agony of autism
By CARYN SULLIVAN

Driving through central Wisconsin recently, I battled the melancholy
that crawls into my heart each year at this time, around the birth
date of my first-born -- my son, whose needs have driven me to near
exhaustion and stretched my limits of patience; my son who is clever
and sweet and has expanded my level of compassion; my son, who should be taking his driver's license test but is not and may never do so. My son, who has autism.

I recalled last summer when he struggled with chronic health issues
that depleted me. Those issues are history now, thanks to wonderful
University of Minnesota doctors. Life is so much better. In my mind's
eye the scale that measured his life tipped away from the end that
housed a sense of loss and despair to the end that harbored gratitude and optimism.

In a freaky coincidence, a radio newscaster interrupted my reverie to announce that local authorities had found the body of 7-year-old
Benjamin "Benjy" Heil floating in a pond less than a mile from his
Wisconsin home.

Benjy, who had autism and impaired communication skills, had
disappeared from his family's basement. Scores of volunteers rallied to search for him. Not surprisingly to me, the media reported that Benjy had previously wandered away from home and was discovered in the basement of a nearby house.

My melancholy quickly became despair for the parents I have never met but who had just heard the unimaginable news that I feared for so many years.

There but by the grace of God, go I.

Instantly, I recalled the boy we called "Jumping Jack Flash," because he never stopped moving. Our curious wanderer who made unsupervised visits to our neighbors, rendering us breathless with panic. The boy for whom we ultimately installed a big black fence in our suburban backyard, not to surround the pool that we would have relished, but to bar him from escaping the safety of our yard.

Thankfully, the media are now focused on the increasing numbers of
children who are diagnosed with autism.

But what does the diagnosis actually mean to the family whose loved one has autism? For many, autism is a lifelong condition, although it manifests itself differently over time. That means thousands of families will be dealing with autism issues forever, whether it be with medical, behavioral, therapeutic, educational, or housing concerns.

The disproportionate amount of time and energy that is devoted to the child with autism affects the siblings, the parents, and the extended family, and frequently causes painful social isolation.

Most of all, living with autism can require extraordinary vigilance
where one always knows what the child is doing and stays one step
ahead of him -- a demand that is incomprehensible to most who don't live it and virtually impossible to achieve.

Perhaps some good can come from the tragedy in Wood County, Wis., if others who have been affected by Benjy's story as I have will find some way to help.

For those who know a family living this life, help can be as basic as
offering to have coffee or a beer with Mom or Dad or to watch their
child while they shop. There is also a considerable need for funding
for ongoing scientific research into the causes of and treatment for
autism.

I hope readers will dig deep into their hearts to find a way to help
other families like Benjy's so their only moment's rest does not come
when their child is in his final resting place.

And to the Heil family, my family extends our deepest condolences.
May peace be with you.

Sullivan lives in Mendota Heights, Minn