Moving Through Molasses

Update (January 19, 2012):

Since the time that I posted this back in August 2010, and the subsequent REpost of it recently, a few changes have occurred:

  • He is now a senior with less than 4 months until graduation
  • He was evaluated and approved for a specified number of “social skills training”  hours via a professional consultant with AASCG through Voc Rehab.

We were so excited about the prospect of help! While we know its not a “fix” for all the issues he has, it was at least a step in the right direction!

I’ve been working with them to set up a solid schedule for him to begin since November of last year, but I got a phone call this morning from his ADRS case manager that she had made a mistake and that he “wouldn’t be eligible until after graduation” for the approved hours.

SERIOUSLY?!

I don’t know whether to laugh at the absurdity of that proclamation, or cry because of it! I’m thinking maybe both.

By the time he graduates, all the opportunities for social skills work in a structured, social peer-driven environment will be lost to him forever. College cannot afford him such a fertile ground for laying the groundwork to better relating with the rest of the world. In high school, he can emulate what he sees happening around him. He can try, with some guidance, to learn HOW to carry on a conversation with kids his own age. He can attempt to develop and maintain relationships both inside and outside of the classroom with the same kids he sees every day. He may even be able to find a date for Prom!

If he had some guidance and instructions from a professional qualified to teach him how, he could be practicing on a daily basis the art of building new relationships, giving voice to his uncertainties and asking for help, learning what is appropriate and inappropriate in casual conversation and how to recognize when he has stepped on the toes of his friends. He possibly could find some relief from the anxiety he experiences every single day from knowing that he’s “not getting it” – that all of these people he’s grown up with since grade school are dating, getting  jobs, hanging out, and having fun together as they prepare to scatter in all different directions – and he gets so frustrated trying to figure out how to do what he sees everyone else doing with ease. How do they get the job after school or how do you ask the girl if she wants to go out this weekend or how to become part of the conversation about upcoming plans, graduation, or college?

To know that for a brief few weeks there was the possibility of some training, only to have it yanked out from under him this morning, disappoints me immensely. I am so not looking forward to this afternoon after school! When he comes in and pours out all the frustrations and anxieties of the day, like he does every school day, I get to be the one who breaks it to him that the training he was counting on as part of the solution is no longer going to be happening. “One more thing wrong”, is what he’s going to say.

::SIGH:: …

(**REPOSTED from AUG 20,2010**)

I don’t know why there are some things that prove to be so difficult when others just fly on past, but moving through molasses is what seems to be the case when it comes to such things as getting a scheduling mistake worked out for my son at school. Or finding him a mentoring program. Or asking for help in any way with his social understanding deficit.Slogging through. An uphill battle. Exhausting.

The schools do a good job with his academics. Don’t get me wrong.  They make small adjustments in the classroom to increase his chances of success – sitting closer to the teacher, allowing him to type any handwritten work, sending a copy of assignments via email.  Little things that add up to honor roll and advanced placement class success. And we really do appreciate it!

But academia was never really his main problem.

It is staying engaged in his day. It’s knowing how to ask for assistance in class. Its about not understanding subjective thoughts that are grey instead of black and white. Its not being able to empathize.

Its about not having anyone to sit with at lunch. Or to talk to in between classes. Or having a clue as to how to carry on conversations.Its about not understanding innuendo. Or not recognizing sarcasm. Or not knowing when the laughter is at his expense, but feeling the burn of ridicule. Its not being able to read facial expressions or body language or voice inflection as part of communication. Its recognizing not being a “part of” and feeling “apart from”, but not knowing how to make it different and being utterly frustrated and defeated by it.

Its about believing other kids when they tell him they’re his friend and doing what they tell him to, without understanding its not a good thing to do – until it hurts him. Its about bullying. Its about how to act in social situations – like football games and pep rallys and concerts – how to act like all these other kids his age who must have been given the instruction manual, because they all seem to know how to act.

That’s a pretty significant gap that I, as a parent, can only do so much about. I can’t go with him throughout his day. And realistically the best time to work on these things is now, while he’s still in school. Because once he leaves high school in another 2 years, the opportunities for social development drop off alarmingly. College is much less structured, relying instead on the kid to initiate social interactions. But what if he doesn’t really KNOW how to initiate? What happens to him then?

So I’ve been searching for some sort of program – one that can pair him up with a mentor or peer buddy. To help him navigate some of these unfamiliar places while he still has an entire population of kids who have structured activities to attend and socialize in. This article echos much of what I’ve been looking at and trying to find a solution for.

And it makes me wonder.

We live in an area lovingly dubbed “Dilbertville” for all of the engineer, rocket scientists, physicists, and other geeky types of that ilk who are concentrated here. And many of them have children who fall in the high functioning autistic/Asperger’s Disorder spectrum. The schools are inundated with a variety of these kids, but the one common thread among them is lack of social skills. So wouldn’t it make sense for the area schools to recognize that to fully educate these kids, the social aspect of their lives needs to addressed? Particularly in the school setting, where so much of their waking hours are spent? Imagine if, in all those situations there was a kid with him who could suggest what to say, how to approach a group, what not to do and how not to act…one to sit with him at lunch and go to the fall football games and winter basketball games… to hang out with him after school and include him in the activities that kids their age do on weekends. Probably a pipe-dream, but it happens in other cities and other schools all the time. Why not here?

I’m just saying.

Namaste,

~me

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Moving Through Molasses

(**REPOSTED from AUG 20,2010**)

I don’t know why there are some things that prove to be so difficult when others just fly on past, but moving through molasses is what seems to be the case when it comes to such things as getting a scheduling mistake worked out for my son at school. Or finding him a mentoring program. Or asking for help in any way with his social understanding deficit.Slogging through. An uphill battle. Exhausting.

The schools do a good job with his academics. Don’t get me wrong.  They make small adjustments in the classroom to increase his chances of success – sitting closer to the teacher, allowing him to type any handwritten work, sending a copy of assignments via email.  Little things that add up to honor roll and advanced placement class success. And we really do appreciate it!

But academia was never really his main problem.

It is staying engaged in his day. It’s knowing how to ask for assistance in class. Its about not understanding subjective thoughts that are grey instead of black and white. Its not being able to empathize.

Its about not having anyone to sit with at lunch. Or to talk to in between classes. Or having a clue as to how to carry on conversations.Its about not understanding innuendo. Or not recognizing sarcasm. Or not knowing when the laughter is at his expense, but feeling the burn of ridicule. Its not being able to read facial expressions or body language or voice inflection as part of communication. Its recognizing not being a “part of” and feeling “apart from”, but not knowing how to make it different and being utterly frustrated and defeated by it.

Its about believing other kids when they tell him they’re his friend and doing what they tell him to, without understanding its not a good thing to do – until it hurts him. Its about bullying. Its about how to act in social situations – like football games and pep rallys and concerts – how to act like all these other kids his age who must have been given the instruction manual, because they all seem to know how to act.

That’s a pretty significant gap that I, as a parent, can only do so much about. I can’t go with him throughout his day. And realistically the best time to work on these things is now, while he’s still in school. Because once he leaves high school in another 2 years, the opportunities for social development drop off alarmingly. College is much less structured, relying instead on the kid to initiate social interactions. But what if he doesn’t really KNOW how to initiate? What happens to him then?

So I’ve been searching for some sort of program – one that can pair him up with a mentor or peer buddy. To help him navigate some of these unfamiliar places while he still has an entire population of kids who have structured activities to attend and socialize in. This article echos much of what I’ve been looking at and trying to find a solution for.

And it makes me wonder.

We live in an area lovingly dubbed “Dilbertville” for all of the engineer, rocket scientists, physicists, and other geeky types of that ilk who are concentrated here. And many of them have children who fall in the high functioning autistic/Asperger’s Disorder spectrum. The schools are inundated with a variety of these kids, but the one common thread among them is lack of social skills. So wouldn’t it make sense for the area schools to recognize that to fully educate these kids, the social aspect of their lives needs to addressed? Particularly in the school setting, where so much of their waking hours are spent? Imagine if, in all those situations there was a kid with him who could suggest what to say, how to approach a group, what not to do and how not to act…one to sit with him at lunch and go to the fall football games and winter basketball games… to hang out with him after school and include him in the activities that kids their age do on weekends. Probably a pipe-dream, but it happens in other cities and other schools all the time. Why not here?

I’m just saying.

Namaste,

~me

Autism Awareness Month

Welcome to Autism Awareness Month!!

If you are unaware of autism…well… you have to have been living under a rock! What was once an unusual, unheard of diagnosis is now affecting one in every 110 babies, out numbering all childhood cancers and diabetes combined.

 

 

Today was the Autism Society’s Walk for Autism. It was the PERFECT weather day and there was a tremendous turnout! Its a great way to start the month and we found resources in our area we didn’t know about before today. That and we got some exercise and sun and fresh air! 😉

Happy Autism Awareness Month, ya’ll!

Namaste,

~me

 

“Asperger’s” Top Google Search after Parenthood Episode

National Autism Awareness month has begun in full swing for April.  Now I’m alllll about educating Joe Public on this neurological disorder in the hopes that one day I can just say “I have a son with Asperger’s syndrome”  and it will not need further explanation. One can dream, can’t one?

One place I was surprised to find it was on the new primetime TV show, Parenthood. In the past, most of the characters who play a person with either autism or Asperger’s have been either stereo-typically exaggerated or been absent all together. I’ve not had a chance to see the episode that created the buzz about Asperger’s yet, so I won’t say yet whether or not I feel it was accurate. I can keep my fingers crossed that maybe this time – just maybe – a better portrayal or semblance of how it affects our lives here in this little fishbowl will be broadcasted each week on a popular new show.

Hope springs eternal! Read on:

Namaste,

~me

Asperger’s syndrome tops Google searches after plotline on NBC show ‘Parenthood’

BY Tracy Miller
DAILY NEWS STAFF WRITER

Originally Published:Wednesday, March 10th 2010, 10:26 AM
 Updated: Wednesday, March 10th 2010, 10:26 AM
On 'Parenthood,' the Braverman family learns Max (Max Burkholder, 2nd l.) has Asperger's. From l.-r., Peter Krause, Monica Potter and Bonnie Bedelia play Max's parents and grandmother.

A storyline on the new NBC sitcomParenthood” is raising public awareness of Asperger’s syndrome – at least according to Google searches.

“Asperger’s” (and various misspellings) were among the top Google trends Wednesday morning after the second episode of the hourlong drama, which features a character with Asperger’s, aired Tuesday night.

Asperger’s is a form of high-functioning autism often characterized by inability to pick up on social cues, heightened sensitivity, and an intense focus on only one or a few interests. Because it is at the low end of the autism spectrum, people without awareness of the condition may assume someone with Asperger’s is simply quirky or socially awkward.

On “Parenthood,” parents Adam and Kristina Braverman (played by Peter Krause and Monica Potter) are told their young son Max (played by Max Burkholder) may have Asperger’s, and Adam is seen struggling to connect with his son.

“Parenthood” writer and executive producer Jason Katims has a 13-year-old son with Asperger’s, and has said NBC was “supportive but wary” about the Asperger’s plotline.

“They want to be careful of making something either feel too heavy, or something where you’re not talking to a large enough audience,” Katims told the Newark Star-Ledger.

“My hope would be that it normalizes it,” Katims continued. “So there’s no stigma to it, no mystery to it.”

Behind the Autism Statistics – Soci-Able

The month has gotten away from me before I could finish all my Autism Factiods! 😦

I guess I’ll just have to extend it into a different month!

rob-eyesFor today, Fact #3:

“Children with autism don’t know how to play interactively with other children… Autism is a spectrum disorder. This means the symptoms and personality traits may vary from moderate to serious depending on how severely the child has been affected. And, contrary to common perception, it is a social disorder, not a disease.

ASDs can impact a person’s functioning at different levels, from very mildly to severely. Many people with ASDs also have unusual ways of learning, paying attention, and reacting to different sensations. There is usually nothing about how a person with an ASD looks that sets them apart from other people, but they may communicate, interact, behave, and learn in ways that are different from most people.

They have difficulty interpreting what others are thinking or feeling because they can’t understand social cues, such as tone of voice or facial expressions, and don’t watch other people’s faces for clues about appropriate behavior.  They lack empathy.”

Social deficits are definitely one of the toughest problems facing autism spectrum kids. For Robert, that has proved to be the hardest thing to overcome and he still struggles with it on a daily basis. Daily. bday-boy4th

One of the first “big breakthroughs” I remember was when I came into our den to see what all the quiet was about. He was sitting with his little sister at a “tea table”, having pretend tea. PRETENDING to eat, drink, etc. Something as simple and “normal” as that scene moved me profoundly and gave me yet another piece of hope to add to the small, but growing, pile of possible.

adviceThey also said he wouldn’t have a sense of humor. Anybody who knows our family can appreciate how funny THAT is! As if he had a choice! He’s got a distinct, often slapstick type sense of humor and we love his laugh. One side of his mouth pulls into a half-grin and his eyes mischievously sparkle.

I remember once upon a time in Walmart, Robert was in the back of the buggy and he was screaming.  With his hands over his ears. He was maybe 4 at the time. In this case, it was simply sensory overload! Trying to hurry, I pushed him to the check out line, hoping not to get the line with the slowest cashier. As he continued to carry on, there was  a lady in the next aisle over. She had a boy about Robert’s age with her and they were both staring.

Shaking her head in disgust, she said in a loud enough voice for people around her to hear her “SOME people should learn to SPANK their kids more often!” Full of confidence in her obvious superior parenting skills, she added, “Then they wouldn’t misbehave so much, now would they?!”2004

I had SEVERAL different retorts come rushing to the forefront of my mind, each checked before leaving my mouth with my motto/mantra/sanity keeper “what good would come of THAT?”

Taking a deep breath and addressing the screaming child in my buggy who was painfully beyond my ability to comfort, I said in a soothing, yet loud voice, “SOME people should go home tonight and hit their knees thanking God for healthy children who don’t suffer from a neurological disorder that makes sounds and lights so painful they scream…isn’t that right, Honey?”

I often think it would be somewhat easier if Robert, as well as most ASD kids I know, didn’t look so “normal”. robngracieHell, most of them are downright adorable looking! If he had, say Down’s Syndrome,  in the same scenario, I doubt that woman would have felt compelled to offer a passive-aggressive lecture about lack of discipline causing him to scream. Taking the time to explain autism and that his outburst was directly related to his ability to process everything around him normally seemed a waste of time and breath. But I couldn’t completely let it pass without saying something in his defense! Progress, not perfection. 🙂 img_3515

He’s certainly tried!  Soccer…basketball…piano… currently electric pianomanguitar…soccer

all with varying success. Though truly amazingly talented at many “typical” activities for little boys, team sports don’t seem to suit him well, though the skills required, outside of social, he has in spades (he’s got some mad skills!).

To date, he still has a VERY difficult time “reading” others too. He doesn’t get subtlety or the typical playful banter teenagers, particularly boys, often communicate with. Interactions remain hard. Everything is very literal. If I sarcastically say something like, “That’s just GREAT…I didn’t REALLY want that picture” when he accidentally knocks over a frame and breaks it, he can’t tell that I’m actually upset. I just told him it was great and that I didn’t want the picture. The underlying hurt and anger don’t register. And that is a chasm I don’t have a clue how to bridge. I guess that will have to be one of the chapters written after its lived out.mylilman

Autism Awareness – Filler

When we began the journey through autism 14 years ago, there was little awareness about autism and precious few resources for families who found themselves trapped in the maze.

Some of our families have been told to put their child in an institution. Were hoping for Harvard.

"Some of our families have been told to put their child in an institution. We're hoping for Harvard."

←(Side humorous Note: Remember when I said “THEY” said “be prepared to institutionalize him”? Found this researching for current info!) hehehehe

During my son’s childhood and into his teenage years, organizations like Autism Speaks, F.E.A.T. (Families for Early Autism Treatment), the Autism Society have helped bring about awareness…which in turn has brought about funding for research…which in turn has brought about a multitude of services and options that even 10 years ago were unheard of. It amazes me how many different ways there are these days to help support both Autism Awareness and research these days!

To that end, I thought as a filler to the previous entries this April, I’d post a couple of the many opportunities available to learn more, help support, and just become a small part of the solution. 🙂

Peace,

~me

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Every time you use the toolbar to search and shop online,

you will raise money for the National Autism Association

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Gerda Brooks Cohen of Hull, MA has been collecting seaglass with her husband Irwin from the beach for 44 years.

When Cohen finds the seaglass on her walks on the beach, she turns the white, amber, green, red and blue pieces into jewelry. As people expressed interest, she began to sell them for around $18 and donates all of the proceeds to Autism Speaks, an awareness and fundraising group.

“I’ve got to do something,” Cohen said one weekday morning, pointing to more than 10 jars of sea glass in her kitchen. “I’ve got to find a good cause.” Cohen is familiar with the issue because her youngest daughter teaches autistic children in Delray Beach, Fla.

As long as there are buyers, Cohen will keep making the pendants and sending the proceeds to Autism Speaks. She includes a flier with information about sea glass and autism with every piece of jewelry sold.

Autism Awareness Month – How Do You Know?

Now this is information that can be pretty critical in getting an early diagnosis. We were an anomaly in the mid 90’s. Most parents didn’t get a diagnosis as early as we did, but then again, if we’d listened to anyone other than our innermost selves, I suppose we may not have gone ahead and had him looked at!

The information at the bottom of the photo is for local intervention here in North Alabama (though many others outside of our area are using ABC, Inc. as consultants). The rest is actually part of the Center for Disease Control’s campaign to increase awareness about what to look for. There’s a “FACT SHEET” at the end that you can click on and download (as a .pdf) to use for yourself, pass on to other parents, or to ask your doctor to post in his/her waiting area. It’s all the same CDC campaign, but since it has some good information, I’m passing it on!

Peace,

~me

Learn the Signs – Act Early

( From the Center for Disease Control)

Early Intervention

Click for Larger View

*Download the CDC’s Autism Fact Sheet