Month: December 2012
From my family to yours, have a very Merry Christmas, and a Happy New Year!
Please enjoy all the posts and continue to spread awareness and activism in support of those affected by Autism.
See you all in 2013!
According the the CDC:
“March 29, 2012 — One in every 88 U.S. children — and one in 54 boys — has autism, the CDC now estimates.”
Recognizing and diagnosing Autism spectrum disorders has come so far in the last twenty years, as well as treatment. Treatment is costly and labor intensive, and many families struggle to find a way to pay for it, or to manage it themselves. It is a complex situation fraught with difficulties, strong emotions and a component of fear.
Dr. Lovaas, who pioneered ABA Therapy for autistic children once said that there was no way to predict outcomes for children with Spectrum disorders. A mildly affected individual might have years of therapy to no effect, while someone severely affected could go on to be indistinguishable from his normally developing peers. For me this added an element of anxiety, because I saw it as a crapshoot…
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It’s been almost a week since I last posted an entry. I had hoped to elevate others’ moods (and my own) this holiday season with the last entry “Autism Night Before Christmas” but as with the universe, the plans of mere mortals often go awry.
I did not want to post something here until today because I wanted to be sure of my own convictions in light of the horrific tragedy in Newtown, Connecticut last Friday. Not that I was unsure of them per se; I guess the enormity of the whole situation was overwhelming and numbing.
The inevitable link made by the media over the gunman’s possible Asperger’s diagnosis and his nihilistic action did not make sense to me. I am a parent of an Autistic child and work in a large residential setting for Developmentally Delayed adults, some with Autism, most with Mental Retardation and co-existing psychiatric diagnoses. While I am no expert in the field, the violent actions of the shooter did not fit into any ‘profile’ of Asperger’s that I had ever read about or come across. People with Autism are most-likely inwardly-focused, and are most likely to harm themselves and not others.
It did not even fit the profiles of those with typical psychiatric diagnoses such as Explosive Disorder or Bipolar Disorder. It does however, fit with Acute Psychosis; those typically described as ‘psychotic breaks’ triggered by a stressor. These, by and large, can occur to any one, whether they have a psychiatric history or not.
So what does this mean? It means the Autism community is again wrongly portrayed as possible violent offenders. It means people misunderstand what a ‘meltdown’ is, why it happens and what diffuses it. People are trained to try to have their explanations, i.e. the root cause of this tragedy, wrapped up in a neat little diagnosis with a bow on it.
This is not Autism. This is not Asperger’s. This is not any of the other ASD’s.
This was psychosis. This was someone ‘going postal’ because he felt slighted by his mother and that school. Was he bullied? Perhaps. Was he introverted? Perhaps. He was also, by all accounts, incredibly computer literate and taking college courses. He had his own motive (the stressor), the means (guns and ammo supplied by his mother’s hobby) and opportunity which I believe was planned: he had to plan to destroy his computers, retrieve the guns, load them, wait for his mother to fall asleep, dress and drive to the school, etc. This was calculated.
The horror of this tragedy is magnified by the guns he stole from his mother. These guns were legally obtained but I really have to doubt anyone’s intentions who buys an assault rifle for target shooting. In my opinion, that’s not marksmanship, that’s overkill; it’s like using a pipe bomb to clear a clogged drain. Would he have committed this heinous act if guns were not available? Perhaps; he could have used a knife or even a crossbow. This would certainly have spared many lives.
This is not about the 2nd Amendment, nor is it a commentary on how average Joes like you, me or the shooter’s mother can own an assault rifle because gun lobbyists have deformed the notion of civilians serving in a militia. If you bought your gun legally and went through appropriate background checks, I have no problem with you. As full disclosure, I do not own a gun.
Joe Scarborough of MSNBC‘s “Morning Joe” program and father of a child with Asperger’s, and who had received criticism for previous comments about the Aurora, CO shootings most recently issued a pointed and poignant commentary about gun control:
That admission took me by surprise, but this tragedy did not occur in a vacuum; its ripples have touched many. It has force people to re-examine what they believe in, and why they believe it. Clearly some things need to be done. I read this article which might just be the loophole that will spur real change: not only should the assault weapon ban be reinstated, ammunition availability should be restricted and purchases should be subject to the same degree of scrutiny as the guns they are intended for.
I was at a get-together this weekend and overheard many things regarding Newtown. One person attributed the shooting to the Internet and kids’ access to it, coupled with never being outside, being a nerd and not playing sports, etc. If given his druthers, any grandkids he would have would spend their life outdoors ‘not cooped up’, even if this tack was at odds with the parents. Yeah right.
Someone else attributed the tragedy to the shooter’s supposed “Ashbergers”, though she did not know what that was. Well-informed. Not.
Someone else wanted to buy a pellet or BB gun to shoot at targets in her backyard. She was advised to shoot a .22 caliber handgun instead as long as her neighbors didn’t mind. You can’t make this crap up.
I did not intend this to be a gun control post but it is. It is clear that despite in-roads in Autism Awareness, there are still many out there who have not heard the message.
Autism doesn’t kill people. It is not contagious. Spread the word.-Ed
The link below is for anyone interested in signing an online petition banning assault weapons and high-capacity magazines, started by the NY Daily News:
- Experts: No Link Between Asperger’s, Violence (abcnews.go.com)
- Groups: Autism Not To Blame For Connecticut School Shootings (fox2now.com)
This is a poem by Cindy Waeltermann, which I ran across a few years ago, and like to share with others. It conveys the mindset, emotions and spirit of many parents during the holidays, who have only one thing on their wish list for Santa.
Merry Christmas to everyone affected by Autism. Have a very happy and healthy New Year! -Ed
Autism Night Before Christmas
by Cindy Waeltermann
Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse
We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract
The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head
Did I get the right gift
The right color
Would there be a tantrum
Or even, maybe, a smile?
Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.
“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack
We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side
We know what it’s like
To live with the spectrum
The struggles and triumphs
But what they don’t know
And what they don’t see
Is the joy that we feel
He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!
He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!
Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope
But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride
We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,
But what they don’t know
Nor sometimes do we
Is that children with autism
We don’t get excited
Over expensive things
We jump for joy
With the progress work brings
Children with autism
Try hard every day
That they make us proud
More than words can say.
They work even harder
Than you or I
To achieve something small
To reach a star in the sky
So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you
That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.
You will realize
What it is I go through
And the next time you judge
I can assure you
That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned……
As an infant, she barely moved. Later she was prone to screaming, rolling-on-the-floor meltdowns.
But Breanna Bogucki responded well to musical toys. At age 3, the toddler was rapping Aaron Carter tunes.
Still, no one could have predicted Breanna, diagnosed with autism at 5, would ever sing in public, much less win a four-state competition.
Now 15 and a freshman at Cary-Grove High School, Breanna won the Special Talents America competition last month with her rendition of Taylor Swift’s “Mean” at North Central College in Naperville. The contest was open to youngsters with special needs from Illinois, Indiana, Michigan and Wisconsin; nine finalists were picked for the show, out of 36 applicants.
“As a judge, I was looking for a few things. One was a great voice, if they are singers,” Peterik said. “Breanna immediately hit me like, ‘Oh my God, this girl has a fantastic voice.’ Not only that, her pitch is excellent.”
Breanna also was engaging onstage, and picked a song perfectly suited to her melodic pop-crossover voice, Peterik said. “You hear it all the time on ‘American Idol‘ — you’ve got to pick the right song,” he said.
Winning the contest was an amazing feeling, Breanna said. Music is incredibly important to her, almost essential, but it’s not easy for her to put into words why that is.
“I don’t think about it. I just like music. I don’t know how to explain it,” she said. “I sing all the time; there’s probably not a day when I don’t sing.”
Her nerves used to be awful, but they’re better now.
“I would always just stand there and get so nervous,” said Breanna, who also sings songs by Kelly Clarkson and Carly Rae Jepsen. “(Special Talents America) was probably the loosest I’ve ever gotten. I moved around. I forced myself,” she said.
Breanna smiled and made eye contact throughout the song, which can be hard for someone with autism, said Jorie A. Meyer, program manager for Western DuPage Special Recreation Association. Meyer is co-creator and co-producer of Special Talents America.
“I sat in the front row for the show and was in awe of her performance; tears rolled down my cheek as she captivated the audience’s attention and got into the music and lyrics,” Meyer said. “I was so proud of her.”
Breanna’s prize is a recording session with Peterik, who will be writing a song especially for her. “I’m excited,” she says. “I’m pumped. I’ve never been in a recording studio.”
Breanna’s parents Dan Bogucki Jr. and his wife, Mary Ellen, have two other children, Kailey, 17, a senior at Cary-Grove, and Dan III, 23, who is studying computer science at the University of Wisconsin-Platteville.
Breanna’s first solo performance — a patriotic song in the third grade — was emotional for everyone who knew her challenges, Mary Ellen Bogucki said. “The teachers all started crying because she never talked to them, and here she gets up and sings in front of everyone,” she said.
When she was 9, she began taking voice lessons at Northern Illinois Special Recreation Association in Crystal Lake, where she also participated in the choir and theater programs.
“She has an amazing voice. It blows me away every time she sings. It’s very seamless; it seems like it’s effortless. She’s perfected it over the years,” said Emily Todd, manager of cultural arts and special events at NISRA.
Breanna also has a courageous voice, Todd said.
“Knowing the struggles that Breanna goes through on a daily basis in her social life … she breaks through. When she’s onstage and she’s singing, it doesn’t seem like she has a care in the world. Nothing can hold her back,” Todd said.
School, especially junior high, was difficult at times because classmates can be insensitive, said Breanna, who has high-functioning autism and obsessive-compulsive disorder. “I feel like not a lot of people are nice sometimes,” she said.
Her sister Kailey said other kids just don’t get why that is.
“It’s one of two ways,” Kailey said. “People will either look at her and not know she has a disability, and think she just does things weird. Or they know she has a disability, so they’ll say, ‘Oh, she can’t do this.’ It just aggravates me.”
But winning the competition put her in a new light among classmates, Breanna said.
Many complimented her singing voice, and others added her as a friend on Facebook. She even got posts on her Facebook wall, which until then had only her mother’s posts.
“Then it looks like my mom just stalks me,” Breanna joked.
Peterik believes Breanna could make it as a professional singer. “I really do think Breanna has a chance in the business. She’s got great style, great pitch; she’s very cute in this vanity-slanted world,” he said.
As for her autism diagnosis, it could even work in her favor, Peterik said.
“People are going to be interested in hearing her. It’s going to be a testimony to what can be done, what these older and younger people can do, even with these challenges,” he said.
Breanna is still reluctant to sing for her family at home. After school, she goes into the bathroom alone with her iPod and sings for a couple of hours. She’s not sure she wants to become a professional singer, she said.
“First I have to get better,” she said.
She already knows what it’s like to have to power through a disappointing performance, after her voice cracked during an NISRA recital in May.
“I finished the song, then I had a meltdown. I cried, and I got over it,” she said.
Then she went onstage again and sang another song.
And with confidence, she said, “I nailed it.”
Boy with autism saves classmate’s life
CHALMERS, Ind. (WLFI) – The motto of the Boy Scouts is “Be prepared,” and that preparation saved a life in an area high school cafeteria.
Fifteen-year-old Mason Stokes is a Boy Scout.
“Basically, it just helps me out in day-to-day situations,” Mason Stokes said.
He also has autism.
“Being autistic, he lives in a black and white world,” Karl Stokes, Mason’s father said. “He doesn’t really see all the shades of gray.”
“My particular autistic trait is that it allows me to remain cool under intense situations,” Mason added.
“He doesn’t understand most facial expressions or most body language,” Stokes said.
But Mason was able to pick up on his friend’s body language Thursday while eating lunch at Frontier Junior Senior High School. He said he knew something just wasn’t right.
“The more he coughed, the less certain I was that he was ok,” Mason said.
His friend was, in fact, choking on a piece of beef jerky. And that’s when 15-year-old Mason knew he had to stay calm and take control.
“Out of instinct, I just jumped up, and ran over to give the Heimlich maneuver to him,” Mason explained.
Mason learned the Heimlich maneuver through boy scouts.
“Instead of just a squeeze, you need to pull up on the stomach,” Mason explained.
And because of that, he was able to get the piece of beef jerky from his friend’s throat.
“After about 5 minutes or so, I went into the office to see how he was doing, he gave me a thumbs up sign,” Mason said.
And that’s when Mason knew he saved his friend’s life. Mason said he’s glad he was able to save his friend’s life. However, he said he’s a little uncomfortable with all the attention it’s brought him.