<![CDATA[Drawing Roads: A Blog About Autism - Autism Blog]]>Wed, 22 May 2013 04:13:47 -0500Weebly<![CDATA[Boy Genius Diagnosed With Autism has Higher IQ Than Einstein]]>Sat, 11 May 2013 12:45:44 GMThttp://drawingroads.com/3/post/2013/05/boy-genius-diagnosed-with-autism-has-higher-iq-than-einstein.htmlPicture
Repost from the NY Daily News


By Carol Kuruvilla / NEW YORK DAILY NEWS
Read more: http://www.nydailynews.com/news/national/autistic-boy-genius-iq-higher-einstein-article-1.1340923#ixzz2SzHMHvmy


Kristine Barnett noticed that her little boy Jacob - whom doctors had tagged as autistic - seemed to have a fascination with patterns. So she took him out of his school's special ed program and let him study the things he's passionate about. Now Jacob is on his way to winning a Nobel Prize.


As a child, doctors told Jacob Barnett’s parents that their autistic son would probably never know how to tie his shoes.

But experts say the 14-year-old Indiana prodigy has an IQ higher than Einstein’s and is on the road to winning a Nobel Prize. He’s given TedX talks and is working toward a master’s degree in quantum physics.

The key, according to mom Kristine Barnett, was letting Jacob be himself — by helping him study the world with wide-eyed wonder instead of focusing on a list of things he couldn’t do.

Diagnosed with moderate to severe autism at the age of 2, Jacob spent years in the clutches of a special education system that didn’t understand what he needed. His teachers at school would try to dissuade Kristine from hoping to teach Jacob any more than the most basic skills.

Jacob was struggling with that sort of instruction — withdrawing deeper into himself and refusing to speak with anyone.

But Kristine noticed that when he was not in therapy, Jacob was doing “spectacular things” on his own.

“He would create maps all over our floor using Q-tips. They would be maps of places we’ve visited and he would memorize every street,” Kristine told the BBC.

One day, his mom took him stargazing. A few months later, they visited a planetarium where a professor was giving a lecture. Whenever the teacher asked questions, Jacob’s little hand shot up and he began to answer questions — easily understanding complicated theories about physics and the movement of planets.

Jacob was just 3-1/2 years old.

His mom realized that Jacob might need something that the standard special education curriculum just wasn’t giving him.

So Kristine decided to take on the job herself.

“For a parent, it’s terrifying to fly against the advice of the professionals,” Kristine writes in her memoir, “The Spark: A Mother’s Story of Nurturing Genius.” “But I knew in my heart that if Jake stayed in special ed, he would slip away.”

The Hamilton County mom, a nursery school teacher, decided to take Jacob out of school and prepare him for mainstream kindergarten herself.

Jacob thrived under his mom’s personal attention. She let him explore the things he wanted to explore. He studied patterns and shadows and stars. At the same time, she made sure that he and enjoy “normal” childhood pleasures — softball, picnics — along with other kids his age.

“I operate under a concept called ‘muchness,’” Kristine said. “Which is surrounding children with the things they love — be it music, or art, whatever they’re drawn to and love.”

By the time he was 11 years old, Jacob was ready for college. He’s now studying condensed matter physics at the Indiana University-Purdue University in Indianapolis.

His IQ rounds out to 170 — higher than that of Albert Einstein. He’s been working on his own theory of relativity. Professors at Princeton’s Institute for Advance Study were impressed.

“The theory that he's working on involves several of the toughest problems in astrophysics and theoretical physics,” astrophysics Professor Scott Tremaine wrote to the family in an email.

"Anyone who solves these will be in line for a Nobel Prize."

Warner Bros. has snatched up movie rights to Jacob’s story. Kristine and her son have embarked on a European book tour, but hope to have some time to rest by July.

“My goal for the summer is just to give him a few weeks off,” Kristine told the Indianapolis Monthly. “The last time he had that was when he came up with the alternative theory to the Big Bang. So who knows what he’ll create?”

http://www.nydailynews.com/news/national/autistic-boy-genius-iq-higher-einstein-article-1.1340923


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<![CDATA[How Autism is Different in Girls vs. Boys]]>Fri, 10 May 2013 01:17:57 GMThttp://drawingroads.com/3/post/2013/05/how-autism-is-different-in-girls-vs-boys.htmlPicture
Earlier this week I came across this article in the Wall Street Journal on why boys are being diagnosed with autism at such a higher rate than girls. The article revolves around a study done by researchers at Yale that came to the conclusion that perhaps girls have better genetic protection against autism than boys do. The study, one of the rare studies to focus on girls with autism, was based on 100 girls between the ages of 3 and 18 with social or attention deficits, Forty-seven of whom were diagnosed with autism. Some of the highlights of the article include:

"From a genetic standpoint, there is growing evidence that boys aren't more susceptible to autism, but rather girls are more protected from it. Yale researchers added to this thinking with new findings presented last week in which they looked at the DNA of several thousand children with autism.

They found that girls actually had substantially more high-risk genetic mutations associated with autism than boys, on average twice as many. Yet, because girls develop autistic features less often, something about being female is protective against the condition, said Stephan Sanders, a postdoctoral fellow at Yale University who presented the work."

"Marcus researchers are comparing sex differences in eye gaze in typically developing children and those with autism, and have been surprised by the findings. The scientists showed six film clips involving social interactions, like boys playing baseball or kids chatting, to 52 boys and 18 girls with autism as well as to 26 and 36 typically developing boys and girls, respectively. Using eye-tracking technology, they were able to capture where on the screen children looked during the entire clip. Overall, both girls and boys with autism looked less often at the eyes compared with typically developing kids, consistent with previous studies. The amount of eye contact from the boys related directly to their overall level of social disability. Boys who looked less at the eyes were more socially disabled.

Girls with autism, however, showed the opposite pattern: Those who focused relatively more to the eyes tended to experience worse social disability, said Jennifer Moriuchi, an Emory psychology graduate student.

The team found significant differences in timing of when girls or boys would look at the eyes, suggesting they aren't following the same cues.

The group is continuing with its work to understand these differences in engagement with the eyes, which highlights just how little is known about how autism manifests in girls, said Warren Jones, research head at the center.

"We tended to assume that boys and girls [with autism] do the same thing when they adjust to everyday life," Dr. Klin said. "There's emerging evidence that it's to the contrary."

While the article doesn't offer much in the way of new scientific evidence on boys with autism vs. girls, it's nonetheless interesting to see that girls with autism tend to look at the eyes when communicating whereas boys tend to concentrate on the mouth. That simple difference could go some way in explaining why so many more boys experience the debilitating social effects of autism as it must be virtually impossible to put together a picture of how someone is feeling and what t




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<![CDATA[Autism, Shoe Tying, and Fantastic In-Home Support]]>Fri, 10 May 2013 00:42:45 GMThttp://drawingroads.com/3/post/2013/05/autism-shoe-tying-and-fantastic-in-home-support.htmlPicture
After countless unsuccessful attempts and seemingly endless frustration, Curtis finally tied his shoes on his own: age 9 years and 5 months. Hardly ahead of the curve on this task, shoe tying is one skill that has served to baffle Curtis and an area where he has lagged behind peers. It hasn't been easy to work with him on the task as it has always resulted in quick frustration on his part. However, his dedicated in-home support worker has spent the last five years working with Curtis on everything from shoe-tying practice, to reading, to making eye contact and communicating appropriately with new found friends on the playground. Jamie, whose hands, arms, and a bit of hair are pictured here, was recently named Staff Member of the Month for her work with our son.

"May 2013

Jamie has worked for Woodfords as a Behavioral Health Professional in Region I for six years, and has provided in-home support for her current consumer for five of them. She has played an intricate role in the substantial progress that he has made during this time. Jamie is a respected member of his treatment team and works collaboratively with his parents and providers to ensure that he is making progress, while making certain that her direct work with him is derived from his treatment plan. She has built a great relationship with her consumer and his family while remaining professional at all times. We value her and appreciate her insight and input. Jamie is a great employee and we are lucky to have her on the In Home Support team!"

As Curt's parents, we could not be happier with the work Jamie has done to bring Curtis as far as he's come. This boy has been lucky to have some very special people in his life and she is certainly one of them. So congrats to Curtis on tying your shoes on your own and a thank you to Jamie for working through that and so much more with a very special little boy.


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<![CDATA[The Waitress, the Autistic Girl, and the Broken Hamburger]]>Thu, 28 Mar 2013 00:35:21 GMThttp://drawingroads.com/3/post/2013/03/march-27th-2013.htmlPicture
Like most parents of a child on the spectrum, we have to deal with food issues all the time. Curtis won't eat pizza with strings of cheese hanging off....or bread with crust....or any other number of food items that are thoroughly inspected prior to consumption. That's why it was impossible not to smile at this article I read today on CNN. If you missed it, it's worth the read.






ARTICLE REPRINT

Last Sunday was just an average morning for Anna Kaye MacLean. Her sister, 7-year-old Arianna, had slept over at her house the night before and seemed to have woken up in a good mood - which is not always a given for a child with autism.

After determining that Arianna’s mood was stable enough for a day of fun activities outside the home, MacLean and her husband decided to take Arianna out to lunch, with a bonus visit to the Easter Bunny afterward. They decided to eat lunch at the Chili’s Bar and Grill in Midvale, Utah, where a beautiful thing happened - and went viral.

MacLean requested a booth facing the window, knowing it would allow her sister the freedom to move around, while also keeping her entertained by watching what was going on outside. The hostess happily obliged and said their server would be over to greet them soon. The MacLean party was going to be one of Lauren Wells' last tables of the day, and with a bright smile, she approached the party to introduce herself and take drink orders.

Before she could even say, “Hi, welcome to Chili’s, I’m Lauren and I’ll be your waitress,” Arianna had excitedly rattled off her entire order: chocolate milk, a cheeseburger with pickles and a side of fries.

Wells delivered the food shortly, but as MacLean watched Arianna devour her French fries, she noticed that her sister wasn’t touching her cheeseburger.

“It was really, really bizarre,” MacLean told CNN in a phone interview. “Arianna loves anything in a hamburger bun. She’s obsessed with hamburgers or ‘Krabby Patties,’” an ode to one of Arianna’s favorite cartoon shows, Spongebob Squarepants.

MacLean asked her sister if she was going to eat her cheeseburger. “No, I don’t want it,” Arianna responded. “It’s broked. I need a new one that’s fixed.”

It’s a standard Chili’s policy to cut a child’s burger in half to ensure the meat is fully cooked to 170° degrees, and that's what was "broken."

When Wells returned to the table, she noticed Arianna was crying, and asked what was the matter.

"I know this is going to sound silly, but I need to order another cheeseburger," MacLean told the server. Wells had a concerned look on her face and MacLean was quick to assure her that there was nothing wrong with the food. "No, no, no, this one is fine," she explained, "But it’s cut in half and she thinks it's broke.'”

MacLean quietly told Wells about Arianna’s autism and adamantly said she wanted to pay for the additional burger. But instead of speaking to MacLean, Wells leaned over to the little girl and addressed her directly, saying, “Ohmygosh! I brought you a broken cheeseburger! I’ll go get you a new one.”

Arianna stopped crying shortly after. MacLean, particularly moved by this, said Wells' exchange with her sister was something she had never experienced before.

“I think most people, just out of fear and the unknown, don’t know how to interact with a kid with autism, so people will usually just keep the interaction with me.” When necessary, MacLean explains her sister's condition.

Wells graduated from the University of Utah in May 2012 with a degree in psychology and hopes to do social work with children in the future. She also has an autistic family member, and said that while she thought Arianna might be autistic, she never assumes anything.

“I treated her the same way that [I would] any other kid who would be crying, but in her case, it was something different,” said Wells. She approached her manager Brad Cattermole, who told her they would happily switch out the broken burger for a new one.

Cattermole, too, stopped by the table and knelt down to speak with Arianna at eye level to apologize again. “You know, I heard we brought you a broken cheeseburger and I am so sorry. We’re back there making you a new one, but let me bring you out some french fries while you’re waiting.”

MacLean says one of the main reasons the exchange was so special was Wells' and Cattermole's decision to speak to Arianna directly.

“It was so cool because it was so intimate. [Brad] wasn’t trying to be loud or trying to make his presence know to anybody else. It was just very, very private, very intimate,” said MacLean.

“Our goal is to make guests feel special, so anything we can do to make an experience over the top of special, we give our servers the power to make the decisions to make that happen,” said Cattermole in a phone interview with CNN. “We’re trying to get each server to connect to each table individually and Lauren is amazing at connecting with our guests.”

MacLean noticed that, surprisingly, Arianna wasn’t upset about the cheeseburger. In fact, she was uncharacteristically calm about the entire situation.

“This was so bizarre because usually, that would have just led to a huge meltdown,” MacLean said, adding that a typical meltdown for Arianna could include tantrums, throwing herself on the floor and general screaming - sometimes getting so violent that she could even physically hurt herself. “I think what prevented the meltdown was that Lauren and Brad were talking to her. They weren’t talking to me, they were talking to her.”

Several minutes later, when the new, unbroken cheeseburger arrived, Arianna stared at it for a few moments before exclaiming, “Oh, I missed you!” and kissing the top of the burger bun.

MacLean quickly snapped a picture and showed it to Wells, jokingly telling her “I think we glorified the cheeseburger a little too much.” Wells, lighting up like a Christmas tree and smiling from ear to ear, asked if she could show the picture to her co-workers and manager.

“It was a cute story. I’ve never heard of a broken cheeseburger, or anything else ‘broken’ for that matter,” said Wells, explaining that she wanted to share it with her coworkers because it was such a sincere interaction.

“It was just a really, really touching experience just to see that kind of compassion and professionalism,” said MacLean. “[Lauren] could have easily just been like, ‘Okay...’ and gone to get her a new one. But she went above and beyond and I feel like everybody involved that was working that day from the hostess to the line cook, just everybody, was super, super amazing. It’s just not something that we’re used to when we have situations like that come up.”

MacLean, who works in customer service for an insurance company and recognizes good service when she sees it, decided to share her story on Chili's Facebook page. The story quickly went viral (it has been shared near 160,000 times and liked by more than 667,000 people) touching hearts around the nation.

MacLean hopes it does more than that, though; she hopes it helps people recognize that not every kid screaming in a restaurant is an uncontrollable brat.

“While we’ve never had a personal experience like this, we know people who have been asked to leave restaurants when their kid with autism starts getting out of hand. It’s so heartbreaking,” said MacLean.

While MacLean and Arianna have never been told to leave a restaurant, they have had experiences where Arianna has gotten too overwhelmed or overstimulated at the table. Other people haven't always understood her autism, and MacLean has chosen on her own accord to leave.

Arianna will sometimes growl while she is eating. MacLean believes that it may be a sensory thing that Arianna chooses to do, or that she may like the feel of growling while she eats her food. Fellow patrons haven't always understood. “We’re used to it and it’s fine, but there were some people sitting next to us and they got up and moved clear across to the other side of the restaurant because it was bothering them so bad.”

The lack of understanding can be frustrating, says MacLean. When Arianna is having a meltdown, most people think she’s just being a brat and that she's being babied. The older sister can't deliver a disclaimer about Arianna’s autism everywhere she goes, but if people are interested she will tell them. The tone of the interaction invariably changes - but words are always directed toward MacLean and never Arianna.

This made Wells' and Cattermole's interactions with Arianna all the more special. “It’s so silly," MacLean said, "but I know every person out there that has a kid with autism can relate. That broken cheeseburger can make or break our day and it made our day, and the rest of the day was great.”

MacLean admitted that she never meant for the Facebook post to go viral; rather, she wanted to recognize Wells and Cattermole for their stellar ability to connect with Arianna on a human level. “It’s not so much that we need to bring autism awareness on a customer service level," she said, "but on a normal, typical social human being interaction. Being sensitive to people whether they have autism or they don’t.”

“I think this stuff happens more often than people recognize,” Cattermole said, “but it was Anna going on to spend 15 minutes to recognize a job well done which led to this outpouring of support.”

Wells agreed, saying that while it was definitely a table she wouldn’t forget, she never expected the response MacLean’s story received. She went on to explain that her interaction with the family didn’t seem weird or out of the ordinary to her.

“It makes me so sad that this is [considered] abnormal,” said Wells. “I was just being myself. I didn’t expect any of this; it’s been overwhelming but definitely cool.”

Chili’s parent company Brinker International Restaurants echoed Cattermole's and Wells’ sentiments in an official statement emailed to CNN.

“Moments like the one from Midvale happen in our restaurants every day, at every table, at every Chili’s across the country. We are delighted by the shining examples in Lauren Wells, Brad Cattermole and the Midvale team, and their kind gestures that made Arianna, Anna and Alex [MacLean's husband] feel so incredibly special. This story made our Midvale team members heroes, and we are so proud to have so many local heroes in our restaurants nationwide who make everyday moments like Arianna’s so heartwarming.”

MacLean has since read the hundreds of comment from strangers on her Facebook post, many of whom admitted they have never thought of something like that when encountering a screaming child at a restaurant. Her hope is that the next time they see a kid being a little different they might just think, "Maybe they have autism; maybe there’s something a little more than meets the eye.”

And for the record, Chili's didn’t charge for the new, “unbroken” cheeseburger.




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<![CDATA[Aikido=New Activity=Curtis Hates It]]>Sat, 23 Mar 2013 23:20:38 GMThttp://drawingroads.com/3/post/2013/03/aikidonew-activitycurtis-hates-it.htmlPicture
Curtis has never been a fan of any extracurricular activity. Let me rephrase: Curtis has never been a fan of the IDEA of any extracurricular activity. Generally speaking, once he gets there and lets down his guard, he has fun, but he'll never tell you that. His autism causes tremendous anxiety around doing anything unknown, for not only does he have to start something new (which most people find anxiety inducing) he has to work much harder to understand the expectations in a setting than we neurotypicals do. He can't read body language or social cues and relies on others to give him short, explicit directions as to what he needs to be doing, and upon receiving those directions, he may or may not choose to follow them. Sometimes I feel sorry for him, and sometimes I think he's just acting like a punk. But I love my kid more than anything and I'll be damned if outbursts at swimming, basketball, and yoga will stop me from trying to find a "just right" activity for him to engage in. It is my goal to prevent Curtis from becoming a depressed, anxious hermit as a teen because hiding in a dark room playing video games is easier than going out in the world and participating. His disorder puts him at risk for a pretty dark adulthood if he isn't forced to do a variety of things as a child, so after failed attempts at other activities (and premature giving in on my part) I decided to look into Aikido, a non-competitive, comparatively non-violent martial art.

Curtis has a history of amazing people finding their way into his life, with more obvious examples such as Jamie and Caron, right down to his first haircut being done by a woman who used to teach special ed and knew just how to treat him. So of course when I emailed Portland Aikido, I learned that both children's instructors work in special education, one specifically with autistic students. Last Saturday, after much haggling and resistance from Curtis, I took a hard stance and told him we are going, and not only are we going today, but we are going every Saturday at 9am until I say otherwise. This is new to me, as I've always tried to respect his sensitivities and never wanted to pressure him, but after a couple of really bad yoga classes with Jamie, I decided the boy is simply trying to get out of things and I'm falling for it. He needs me to tell him he's going, not ask him if he wants to, because if left to his own devices, he'll lock himself in my room and play his Playstation for days on end...literally.

He was nervous and shy at his first class, and had lots of questions about why things are done a certain way (a dojo has several rules of etiquette.) His instructors were patient and caring, yet pushed him to do his best, and the other kids were cheering him on. This was all observed by me peeking around a corner because he was to embarrassed to have me sit and watch like the other parents. He did a great job and was chatting it up with the other kids after class, and then got in the car and told me how much he hates Aikido because it's Japanese and he doesn't like Japanese things. Classic Curtis.

Today was his second class. He fought me again this morning and wouldn't let Greg see him in his "uniform" before we left, but I got him out the door, treated him to a bagel and an oj and he happily walked into class and told me to sit in the other room again. I could hear him talking and laughing with the others the whole time and I even caught a peek of him engaging in the activities. Then, about 3 minutes before the end of class, another parent called me into the room. And there was Curtis, about to be presented with his white belt, frantically waving his hand and mouthing "go" to me, as in "DON'T WATCH!" According to Curtis, his most embarrassing moment to date was when he was presented with the Kindness and Respect Award at his after school recreation program because everyone clapped, so this occasion of being the center of attention and praised is no doubt a close second. But he held it together...until we got home.

When we got in the house, he started hitting me and telling me how much he hates me for making him go to Aikido. He threatened to "bleach" the belt so as to destroy it (poor kid had no idea how funny that comment was) and then he hid under the covers in my bed for 20 minutes. He emerged sobbing and shaking and I held him for awhile and we talked it out. He just hates being the center of attention, which I get, but in real life it happens and he can't always destroy the awards he gets and beat me up afterward, so we'll keep working on it. I really think that Aikido will help with his confidence and even though he claims to hate it, I have heard him laughing and seen him smiling, so it's not all bad. I'm sure when he gets his first yellow stripe on that belt, he'll have another awesome meltdown, but my hope is that a few stripes in he'll see that he is safe and capable and that we are all cheering him because we care, not because we hate his guts and want him to cry.

Next Saturday at 9am Curtis will be back on the mat whether he likes it or not, and I'll be hiding around a corner smiling when I hear his laugh.

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<![CDATA[Autism and YouTube]]>Thu, 21 Mar 2013 00:19:56 GMThttp://drawingroads.com/3/post/2013/03/autism-and-youtube.htmlPicture
There's something about Autism and Youtube. While my evidence is anecdotal, children on the spectrum seem to have a special affinity for YouTube.  In fact, one of the questions I'm generally asked by people who know someone on the spectrum is "Does your son love Youtube?" The answer is a resounding yes.



Curtis has hijacked the YouTube account I started years ago and quickly uploaded about 60 original videos with 2,500+ views and counting. These include about 7 versions of "Sittin on Tha Toilet", with each version of the same song sung from a different bathroom, another 8 or 9 "funny sense of humor" videos ( with enough camera bounce to make even the strongest stomach queasy) and various video game walkthroughs that appeal to only the smallest of YouTube niche audiences.

Whether it's the ADD nature of YouTube or the access to virtually anything of interest Curtis is one child on the spectrum who can't get enough YouTube. Perhaps predictably, he also mimics the behavior of his friends who are prolific YouTube posters. He's taken to doing a roll call of shout-outs at the start or conclusion of his videos as he's seen friends do and takes leads from his friends posted material on how to do his own videos. Then there are the gems (some linked below) in the form of advertisements, original songs, and a special author's reading. I imagine most kids like YouTube but it would also make sense that those on the spectrum especially fond.

Curtis is also looking for subscribers, and agreed to take the picture above only when I told him I'd ask people to subscribe to his channel. So subscribe to his channel if you want to join his growing list of shoutouts.



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<![CDATA[Ignorance was bliss: Remembering life before the diagnosis]]>Fri, 15 Feb 2013 23:16:23 GMThttp://drawingroads.com/3/post/2013/02/ignorance-was-bliss-remembering-life-before-the-diagnosis.htmlPicture
I recently stumbled upon some old video clips of Curtis from the summer of 2005, when he was about 18 months old. It reminded me of how it felt before he was diagnosed and inspired me to write about it. 

I remember when I thought he was a "scientist" observing carefully how a cordless telephone spun endlessly with minimal human intervention. He would spend half an hour just spinning the phone on its back, watching from various angles, and all I could think was how he may be a physicist some day, completely unaware of what his behavior was actually telling me. He would rearrange magnetic letters on the fridge in an obsessive way and I would be so proud of his concentration, as I could yell his name repeatedly from 2 feet away and yield no response. Little did I know that his lack of response was more than simply a deep concentration and commitment to the perfect placement of colorful, magnetic letters. And when he would fling items over his shoulder to reveal a clear table surface, I thought it was his way of being tidy. Really he was just visually overstimulated and had no idea that a cup of water actually belonged on a table. Then there was the running..the constant, fast-paced, aimless, careless running, that began at 12 months and didn't stop until he turned 5. Clearly he is going to be an Olympic runner someday, I thought. He can't be bothered with the other kids on the playground because he is too busy training for his gold medal. Well, silly me, he was simply seeking sensory refuge by running constantly, and had no interest in other children because a.) they were other children and b.) they were playing on playground equipment that his lack of motor planning skills made it difficult for him to navigate. So he ran alone. In one of the videos, he is coloring a masterpiece on his easel and I remember thinking about how passionate his art was. But looking at it now, his crayon grasp was immature and he was simply drawing an abrupt series of vertical lines when he should have been drawing circles and complex scribble patterns. He was basically doing what a 9 month old should to with a crayon, but he was twice that age.

Life with autism is the only life our family knows now, and I almost never think about how life would be without that element. We're cool with it, and realize all of the great aspects of it, like constantly checking our egos at the door, listening to the funny things a literal little person says, and meeting amazing people who help Curtis every day. But it is still nice to look back and remember how it felt to just be like every other parent gleaming at the awesomeness of my child and having no idea what was coming our way just one year later. The days when I assumed he'd just step into kindergarten without an IEP and a bit of a fight and when we figured he would eagerly step on the baseball field just like his dad did. When Valentine's day wasn't the cause of 6 days of stress and he could just go to a yoga class without a special helper (we love our Jamie) like all the other kids. Although his early diagnosis was the key to his success, I feel the time of oblivious pride was stolen from us prematurely, so it's nice to remember how light it was to have no idea something was "wrong", even if that time was gone in the blink of an eye.
Laura, Mom

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<![CDATA[Autism and Pulling Back on 1:1 Support]]>Wed, 06 Feb 2013 02:40:53 GMThttp://drawingroads.com/3/post/2013/02/autism-and-pulling-back-on-11-support.htmlPicture
At Curt's most recent educational plan meeting, his support team and parents decided it was time to experiment with pulling back his 1:1 support. Effective recently, his support was pulled back to two hours a day instead of the full day support he had received through his first three years and fours months of school.

This limited amount of support was unfathomable in previous years. Curtis spent his kindergarten year trying to scale the playground fence to get away and the next two years clinging to a series of bracelets, necklaces, and other items to make him feel safe and comfortable at school. But this has been a year of great growth for Curtis evident to his home and school support, those in his classroom, around the school, and us at home.

Since starting with his new ed tech a couple months ago he has continued to progress. While forming a bond and trusting relationship with his new support person he has become less dependent on supporting staff in the classroom and relies more on help from friends and going straight to his teacher. On top of that, he has been spending three days a week in an after-school rec program with 25 kids and 2 or 3 adults in support. Not only has he been fine, he recently received a Kindness and Respect Certificate of Appreciation "in recognition of valuable contributions to the staff and kids in the after school recreation program". The feedback we get from the rec staff is glowing. They tell us his is consistently considerate of every kid in the program and is never unkind to anyone.

This isn't to say there aren't still issues at school and all is "normal". He still needs his dad to walk him into the school and not leave until there is a handoff to his support person. He has his friends, but still has issues regularly initiating appropriate social interactions with peers, has generally bad eye contact when speaking or listening, difficulty in large groups, difficulty doing group work without support, hard time handling music class or the cafeteria. difficulty closing out his day (packing up), and an assortment of other obstacles. But this pullback in support is a very gratifying thing for his parents. He is thriving in his classroom and keeping up with his peers and doing it with pride and a smile.

It can be a difficult sell to get a boy with classic autism into a mainstream classroom and expect a school to welcome the situation with open arms. But we always felt strongly that if we gave him all the training and support he needed from that first day of kindergarten that we would be working toward decreased support in the future and perhaps someday, no support at all. Reducing to two hours of support a day was a big step but we tried not to make it a big deal and Curtis is responding like it isn't one. And going from full day support down to two hours by 3rd grade provides validation to us that we knew what was best for him all along.






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<![CDATA[Happy 9th Birthday, Curt. We Hope You Are Always Just You.]]>Sun, 06 Jan 2013 13:43:19 GMThttp://drawingroads.com/3/post/2013/01/happy-9th-birthday-curt-we-hope-you-are-always-just-you.html
Always keep your goodness and never lose your love. For then you'll be rewarded with success in ways you never dreamed of.

You don't have to be a giant to be strong, tall, and proud.

All you have to be...is someone people look up to.

You've got a big heart. Keep it filled with happiness.

You've got a fascinating mind.

Keep finding new ways to grow.

Keep yearning.

Keep learning.

Keep trying.

Keep smiling.

And keep remembering that a parent's love goes with you....everywhere you go.

- Douglas Richards
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<![CDATA[Guest Blogger: Jeff Stimpson, Father of Alex, Teenager Diagnosed With PDD-NOS]]>Sat, 05 Jan 2013 02:48:07 GMThttp://drawingroads.com/3/post/2013/01/guest-blogger-jeff-stimpson-father-of-alex-teenager-diagnosed-with-pdd-nos5.htmlPicture
Voice

I've hauled my sons Ned and Alex out for a Sunday afternoon. The streets of Manhattan are yellow, empty and hot. I steer the guys toward the shade, figuring this is the kind of street-smarts a good dad imparts. "Shade, guys. Hug the shade. Water's in Alex's backpack." Ned's wobbly. Alex (13 and PDD-NOS) walks and walks and then breaks into bobs and weaves. I wish he wouldn't do that. I'm sure he wishes he was home with his iPad.

"Michael's?" Alex says. This is the crafts store nearby -- and despite autism he sure as hell knows it's nearby -- where they sell the plastic animals he always and always seems to want. "Yes, Alex, we'll go to Michael's as soon as we go to the sporting goods store to buy Ned his baseball glove." Ned, who's 11 and typically developing, doesn't have a baseball glove. I had one by his age.

"Michael's?"

"Yes, Alex. We can go to Michael's now." Michael's is across the yellow hot street. It's 94 degrees. Is this the kind of future summer for the kids I brought into the world?

In Michael's Alex yanks my arm toward the aisle of plastic animals. Thing is, he got a plastic bear yesterday. Tomorrow, while Ned is at baseball, the plan calls for me and Alex to hit clothing stores to find the right cut of narrow pants and shorts that Jill insists -- and I agree -- he needs to look anywhere near, God, let's face it, normal. I think yet another plastic animal in our house would be a good reward for good behavior during clothes shopping, and tell him so.

"Fireman?" Alex says, holding up a $4 plastic fireman. I thought they just had animals.

"No, Alex. Tomorrow. If you're good while we're clothes shopping."

"Tomorrow..." Alex says. Does repeating words means he's moving ahead? We bob around this retail environment for a while: Alex fiddles with the idea of making me buy a wooden letter; Ned finds a wooden crucifix and thinks you drive into the vampire's heart to kill him. I explain that no, you hold it up and keep the vampire away. I tried to show Ned "The Night Stalker" once. Ned didn't seem interested. "Alex, let's go!"

"Dad," says Ned, "how about some clam chowder?" He's referring to the pot of stuff at the next-door Whole Foods. I'm ashamed to admit it as a born New-Englander, but what they call chowder at this next-door retail environment isn't totally repugnant. "Okay, Ned." So we go next door into the air conditioning and scoop out chowder. They even have a place to sit down to eat it. "Ned, go find us a seat while I pay."

He does. I find him. Four chairs, three of us. In a normal life, that would be enough. "Nooooo!" says Alex. "Nooooo!" I don't know if it's the heat or the backpack or that he will eat nothing we eat, but he will not sit down. Ned has his little cup of chowder -- I've taught him to like the stuff -- and I have my big bowl and neither matters to Alex. I tell him to sit down and he bites his own arm.

"Alex, sit down! I want to eat my lunch!" Doesn't everyone want to eat their lunch? Isn't everyone entitled to eat their lunch? "Nooooo!" He bites. He squats on the floor. I feel and yet don't feel the stares of the people at the table behind us. "Alex, I just want to eat my lunch!"

Alex doesn't do lunch. Haven't I learned the simpliest lesson yet? I haul him outside. He squats on the sidewalk and when I order him to stand up he does and then squats down on the sidewalk again almost immediately. Ned appears. "Alex," Ned says, "what do you want? Do you want the iPad? The iPad isn't here. If you want the iPad we have to go home. You have to go home if you want the iPad."

I'm not sure I can reach Alex anymore. I'll know Alex 30 years if I'm lucky (at times I feel like I'll know him 40 years if I'm not). Ned may know him for 70 years, if the love and caring doesn't evaporate some afternoon on the floor of a place like Whole Foods. You have to go home if you want the iPad. That is the voice of a parent.

  Jeff Stimpson lives in New York with his wife and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon) and has a blog about his family at jeffslife.tripod.com/alextheboy. He contributes to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, the Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

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