Don't Forget The AC

I was just on an autism group I subscribe to and saw this video. Two men died of heat stroke in their group home. The room was not air conditioned and there was not a fan circulating the air. I worry about things like this as our little guy sleeps completely buried under the blankets (always has), head to toe and no matter the temperature. Needless to say, our home has been compared to a walk in freezer for that reason. It is my hope he will eventually sleep with his head out of the blankets and maybe now, that will become a priority. Stories like this illustrate why there needs to be monumental change in services for those with disabilities. Things like this just shouldn't happen.

Please remember that if your loved ones are on some medications, they can be more susceptible to heat.

Past, Present, and Future

While recently exploring the outer rungs of internet archives, I came across this article from 10 years ago that describes the challenges faced by autistics in finding (and keeping) employment.

From the article:

For many of us, the word "autism" evokes frightening images of children shut off from the world, rocking, screaming or banging their heads. And if we think of autistic adults at all, we are likely to picture Dustin Hoffman playing the odd, card-counting "savant" in the 1988 movie Rain Man.
While not inaccurate, those perceptions fail to account for thousands ofautistic adults whose special ways of thinking make them quite well-suited for jobs in programming and computer graphics. Autism often leaves those people with poor social and communication skills while bestowing gifts of extraordinary concentration and creativity.
Unfortunately, for every autistic person who succeeds in the workplace, there are eight or nine who fail.

10 years later not much has changed. There's plenty more "awareness" out there yet obstacles still exist that prohibit autistics from reaching their potential in the workplace. That is if they're given a chance in the first place. Stigma and ignorance reign supereme. So sad that this could be changed with enough determination by enough of us. Instead of a unified voice, we remain scattered beyond recognition in our efforts - varied as they may be.

Let me explain.

My children are still young and many of the circles we run in are full of other parents with children around the age of ours. Most but not all have a child on the spectrum. Discussions usually revolve around treatments, therapies, meds, and school - but mostly about treatments and meds. We are usually just observers as ours has never taken meds and our therapies are just boring ol' speech and OT. There is not much discussion about employment issues unless me or my wife bring them up, and even then, they are short-lived. I know we're thinking a good bit down the road, and I'll admit I'm nervous about where we'll be in 10 years in regards to societal understanding of autism. I don't think it's ever too early to start correcting problems that are known to exist. But procrastination IS the American way plus there are countless rainbows to chase, thanks to numerous predatory alternative therapy pitchmen.

One of my nagging fears is that the same misconceptions will prevail 10 years from now. I think it falls on our shoulders as parents to shape the future world our children will inherit. It is discouraging to say the least when I hear parents endlessly discussing new therapies with nothing more than anecdotal evidence to support it. It's frightening to know their resolve and eagerness to try the next great miracle cure. So focused they are on the efforts to "fix" their kids before time runs out on them. I am worried that when they come around and accept (hopefully) that their children are who they are, time will have indeed run out to prepare a world that is more enlightened and willing to give our kids a chance to be productive members of society. We (my generation) will have failed our children.

My dream is that 10 years from now, articles about autistics and employment won't need to exist and that sometime between now and then, we wake up and change things we certainly have the ability to. We've got a long way to go.

A Sad Reality

The story of Alex Barton is making its way around the media. Part of me was exited at first because it wasn’t swept under the rug and is getting some decent attention. The first few days after the story broke, many concerned people who follow these kinds of things left comments firmly in opposition to this horrifying and unfortunate event. Then, as a broader audience who are unfamiliar to life with disability saw the story, a darker tone began to permeate the comments section.

Here's a clip from a CBS news segment about the story

From the comments section:

“I love it! It seems so right to me I can’t help but laugh.As for the kid, well, I’ve dealt with disruptive retards, which is what Special Needs really means, and other mentally disturbed people. It’s wrong to put retards in class with normals. It’s wrong to inflict screwed up people on normals, especially since the crappy education those kids get will be their only shot at success in life.All over America parents of retards have forced legal battles so they can include their dumbass kids on the rest of the school system. They like the free daycare they get out of it and it somehow makes them feel better that little Jonny is as normal as everyone else. This bit of selfish self-delusion might make them feel better, and save money, but it screws everyone else over. If that lady is burdened with a retard, then she should get him in a special school where they can try to educate him.”

Here’s another one

“This kid will never do anything positive for society. Only weigh others down for the rest of his life. This country needs to stop making others treat these people like they’re “special” when they are only needy.”

Or this little gem

“I wouldn’t want this kid in class with my little one either. He belongs in a special need class where he can sit around and burp while the healthy kids can be educated so they can grow up and pay taxes to support the unemployable…”

And finally, some good old-fashioned hate

“Why do we have to pretend that a little retard like this belongs with normal kids? Imagine trying to keep that little brat under control for 6 hours a day while you teach 16 other kids.It only slows down the kids who are going to graduate one day and actually hold a job. This nation will be ruined by the asinine quest for equality. Put him back in his cage already or pitch him in the river - tell the mom to try again and have a normal kid. I’d volunteer to plow her.”


There are many comments that share this hostile tone peppered throughout the discussion. Disturbing? You bet. Now, there are some also many comments left that are vain attempts to sway this sort of thinking and I’m sure some amount of the blatant bigotry is attributable to trolling, but it’s still scary to think this evil exists all around us.

Then there are comments that oppose what happened but also feel a need to have separation of typical children from special needs in the classroom. I am more concerned about this group of thought than the extremes because after giving this event some thought, they arrived at the conclusion that their children were better off not being around kids like mine. What’s missing from many of these comments is acknowledgement that Alex’s classmates have undoubtedly learned a lesson in exclusion that is in no way benign. And so has Alex. No, the focus seems to be on their “perfectly normal” children receiving the best education without the inconvenience of interaction with peers who are neurologically different. Well, let me say this – If your children do receive this great education free of the hassles of inclusion, and these children excel in math, science, and the arts, then go to a prestigious university, get the perfect job, 2.5 kids, picket fence, all while believing that it’s okay to treat other human beings as second class citizens, that it’s okay to simply vote out those they don’t feel deserve to be in their presence, then all that success will be meaningless. The eyes of humanity will see these Class-A A-Holes as colossal failures. And rightfully so!

Evil In The Classroom

Actually, evil is not a strong enough word to describe this person’s actions. This KINDERGARTEN teacher at Morningside Elementary in Port St Lucie FL is a shining beacon of bigotry and hate in an environment where she is in control of forming lasting impressions on the minds of our children. Wendy Portillo mandated that her kindergarten class, one by one, say what they did not like about 5 year old Alex Barton a student who is in the process of being diagnosed on the autism spectrum. Then by a 14-2 vote, Alex was voted out of the class.

Here’s the article

On many levels this is disgusting. Not only was this act extremely cruel toward Alex, it was wrong to encourage his fellow students to think critically about reasons to exclude someone from the group. This is one of my (and I’m sure I’m not alone) biggest fears with our children and public education. Our child will be entering 3rd grade next fall. He is becoming aware that he is different in many ways and that his differences make him a target. Fortunately, he’s had teachers who look out for him and his peers have been great so far. But one Wendy Portillo in this delicate equation could change all of that. Alex's relationships with the other classmates is probably beyond repair. It’s a shame this happened to Alex before his classmates really got to know him. A teacher worth her salt could have strengthened these relationships for him that would have provided a support system as he navigated the school years. Instead, this monster manipulated a group of 5 year olds to project her prejudice and hostility towards a disabled child. How very sad.

What Autism Is Not

If you weren’t under a rock during April, you’re somewhat “aware” that April is Autism Awareness Month. And, if you happened to tune in and see some programs devoted to the issue, you probably came away pretty confused. Everyone wants to explain what autism is but there’s a problem with that – each person, autistic or not, comes with their own set of ability and disability, a unique ratio of strengths to weakness. There are so many mixed messages that parents (especially new ones) often feel like they’re caught in a whirlwind of information. It can be exhausting.

Don’t get me wrong, I’m all for getting information out there to people seeking it. But there is a lot of contradicting information out there. Some is helpful, some is factually inaccurate, and some is downright deceptive. It’s the deceptive information that grinds my gears. It is there to take advantage of the confusion and exploit desperate parents. It often offers miracle cures and uses sensational language to define a disorder that is generally not understood. As a parent who has endured several years of this deceptive onslaught of predatory hucksters and also organizations that help to further stigmatize autism, I’ve nearly reached my breaking point.

I can’t define what autism is. It is a human condition whose properties are different for each individual. For my family, autism is just life. It is filled with heartache, happiness, redirection, doubt, sadness, joy, frustration, achievement, tender moments, outrage and triumph. Mostly it is a journey of discovery for all of us. Our pity is for those who will never see life through the eyes of our neurologically different brothers and sisters.

On the other hand, it is easier to spot what autism is not.

Autism is not an epidemic, a pandemic or any other alarming term associated with dangerous disease.

Autism is not something for which any treatment or therapy will cure. There are many proven therapies that help to better adapt autistic individuals with their world but there is no magic bullet. Autism is life-long.

Autism is not and should never be comparable to deadly diseases such as cancer or AIDS. You don’t have to look too far to find those who use shock statistics to portray this view. It’s scaremongering gone wild.

Autism is not caused by vaccines. It’s time to put this one to bed. Current studies again and again do not support this view.

As autism keeps winding its way into our everyday dialogue, we should hopefully move beyond the current state of confusion surrounding the issue. It’s difficult to do that now because too much money is being made from all the chaos. I hope a day of clarity comes in my lifetime.

Death of a Camera

It all started in the summer of 2006. Our first offspring had discovered the joy of photography and had become relentless in his search of where the camera was stored. Out of sight, out of mind didn't work anymore as he was on to our intent to keep him from his beloved new favorite gadget. Not that we didn’t encourage his curiosity when in our presence but this particular child only wished to tinker when he and his fascination were alone.

Now, when this particular flavor of our family gets his mind set on something, attempts to curb the obsession are futile. We may delay the inevitable for a brief period of time and in this case, it was just over 2 months. During this time, our camera was in some sort of witness protection program within the confines of our home, often shuffled around in the dark of night. Its predator was a very capable and witty 5 year old fully aware of his parent’s fatigue as offspring 2 was only a few months old. Newborn baby time means the camera makes many appearances to capture the toothless grinning moments of discovery that are gone in a flash.

Avoiding capture during these risky moments of reveal was attributed to dumb luck. We tried to place it in cubbyholes and hard to reach places but, over time, we were getting lazy. One day, our determined sleuth had witnessed me go into the kitchen and return moments later, camera in hand. I should have snuck it into a coat pocket in the bowels of our closet after its use but I had become too confident in my ability to outsmart my firstborn and assumed he probably wasn’t paying attention. We captured the moment of parental bliss, I turned the camera off, and placed it back in the cupboard behind the box of light bulbs, unconsciously smug, knowing it would be safe there.

Then it happened. It was a beautiful day for going to the park and our little man was hounding us. Being a child of very few words, deciphering the code was sometimes challenging but this one was easy.

“Slide. Okay.”

“Would you like to go to the park and slide today?”

“Slide. Okay.” (Grinning)

“Alright, let’s get your shoes and get baby sister ready. We’ll go in a few minutes.”

“Slide. Park!” (Running downstairs)

Gathering gear for an outing when you have an infant is one of the human mind’s most exhausting tasks to process. The “What if” scenarios overwhelm you and you end up taking far more than the otherwise rational mind would allow. In our efforts to gather diapers, wipes, bibs, rash cream, sunscreen, outfits, and whatever else was lying about “just in case”, we took probably more than 10 minutes – plenty of time for a targeted search to bear fruit.

In a last minute rush to get out the door, I was instructed to grab the camera. Subtle clues did not process when I first entered the kitchen. I did not notice the chair sloppily slid back under the island. I did not notice the rummaged appearance of the cupboard upon first opening it. I did notice the camera’s lens was fully extended but it was in the off position. Realizing what had happened, I still hoped maybe it wasn’t so. “Could just be the batteries”, I thought. They never last too long. I located a new box of batteries and replaced the old ones. Nothing. At once, a feeling of realized anticipation washed over me but not the good kind.

We went to the park, camera-less, and had a great time. Upon return, I tried in vain to resurrect our recently departed gizmo. There was confirmation of what we already knew when I removed the memory card. In this case, it had functioned as the camera’s black box recording its final moments in the hands of its captor before it was apparently dropped smack on its lens. The images left no doubt whodunit.