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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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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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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.



 
 
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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Now in 3rd grade, Curtis will soon be expected to move on from the only ed tech he has ever known to help guide him though the school day.

Curtis and I started our closure processes last Friday. His growth this year and his ability to tap into every tool that we (as a support team) have instilled in him over the past few years has been very evident. I have said since day one that my goal with Curtis was to, eventually, work myself out of a job. Over the past 3 and a half years I have acted as a mirror for him, so that in an environment where he doesn’t exactly feel comfortable or know “what to do” he can look at me, model, learn and eventually live the behavior that is desirable.

We are at the point in our working relationship where continued growth will happen by being set “free” and exploring every tool he has learned to confront his fears.   I told him last Friday in the afternoon.  We packed up his school bag and said goodbye to his class an hour early. I told him that we were going to go for an old school walk – on the train tracks behind the school like we use to when he was younger and needed more running time and space from the chaos of a school environment..

I did inform one of his best friends in the room of this news earlier in the day so that when we did leave the classroom, he could give Curtis a big hug to (unbeknown to Curtis) make him feel good – to feel connected before the big news dropped. The look in his friends eyes as he was saying goodbye to Curtis for the weekend (knowing the news that I was about to share) spoke of the love and loyalty he has for Curtis. His friends, more then anyone, have made me feel the best about my decision to move on. They are ready to pick up right where up where I will leave off.

We made a stop by my car to grab the half dozen eggs that I brought, thinking he might want to chuck a few at a tree after he hears the news that Ms Barber was going on to another job. We stopped at a bench once we got to the trail and I told him that I had something important to tell him. I started by sharing some “remember when you when you first got to Presumpscot” stories to paint the picture of what he looked and acted like when I first meet him at school - timid, mute, anxious, confused, isolated and unpredictable. I then began to share a reminder of what my job was and is now – and how even that looks different because of how much growth he has undergone.

I told him that it was job to make him feel safe, secure, and comfortable at school so that he can learn.

And learning he has done – he has advance skills in math, reading, and writing.

I also mentioned how my job was to help him make friends and find the good (or the humor) in all those around us; he also has surpassed what his support thought was possible in this area. He has a very diverse school filled with friends of all ages and backgrounds that give him high fives daily, and some special ones that get the hugs. I finally told him that it is now my job to let him go when he was ready – and he may not be able to see it, but I can and it makes those around him very proud and happy and excited about the future.   

His first reaction was backing away from me and saying over and over again, “You’re joking Ms Barber – right? Say you’re joking. Don’t kid with me. Are you lying? ” He then wanted to know if  I didn’t like him anymore and wondering why I was quitting on him and quitting on my job. And his final verbal reaction was telling me that I wont like my job and I will be back working with him by April.

His nonverbal reaction was shredding leaves on the ground and tearing his snack bag with fury in his rambling and in his body language. Before we started to process all these thoughts on our walk, I wanted him to start throwing eggs. I did the first one to model – I threw an egg at a tree while also letting out my verbal feeling, “I am so nervous about this change!”  He then stepped up to the tree, nailing it smack in the middle with an egg saying, “I’m so angry at you Ms Barber!”

It will be the most important job I face over the next three weeks to work through every feeling he has around this transition and to help him into a more clear space. I gave the school a month notice so that I had plenty of time to honor all of these first reactions and leave him in a place where his skin is a bit thicker, he feels brave as an individual and is ready for the new support to come in - or at least ready to fake it.  He will continue to have full support in the classroom.  But it is my belief that, b/c Curtis is an out of sight, out of mind sorta guy, he will step up to the plate when I'm gone.

I have a feeling that he will come into himself as a individual more through this change and lean more from his friends. This ultimately has been my job all along -  to show him the joy of true connection and through this transition he will find his true connection to himself and to his peers.

Caron, 1:1 School Support

 
 
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Screen Time

ScienceDaily reports that children with ASDs "tend to be preoccupied with screen-based media."

"Alex, hear that?"

My son peers into his iPad as if peering into a crystal ball. "Alex?" I walk over to the couch and see Teletubbies on the screen, sometimes Elmo and crew. Alex peers closer; I see his new mustache in the glow of the screen. “Alex, did you hear me?” He grips his headphones as if I had lunged to seize them off him – which I will have to do about 9 tonight, Alex’s bedtime as he nears age 14.



The study by Dr. Paul Shattuck at the Brown School at Washington University looks at how children with ASDs spend screen time. "We found a very high rate of use of solitary screen-based media such as video games and television, with a markedly lower rate of use of social interactive media, including email," Shattuck says.

TO: Alex  

FROM: Your father 

SENT: Mon Oct 22 2012, 9:13 p.m.  

SUBJECT: Go to bed

Nearly 60.3 percent of the youths with ASDs were reported to spend "most of his/her time" watching television or videos. "This rate appears to be high, given that among typically developing adolescents, only 28 percent have been shown to be 'high users' of television," Shattuck says. As cognitive skills increased and children with ASDs grew older, use of social media increased.

“Dad?” says my other son Ned. “When can I use the iPad?”

Ned deserves the iPad, too, but the thingAlex doesn’t seem too interested in social media. He sits evening after evening in the flow the bathtub faucet, never washing his hair unless I ask him to, unless I dribble the shampoo into his palm and teach him to rub it into his hair with both hands. I asked his teachers to teach him to use both hands for things – aren’t they doing that? Often, Alex sits in the tub and stares to the right. After half an hour or so, I hear the water go quiet and Alex emerges into the living room, usually wearing nothing. Did I mention age 14? keeps Alex quiet in the evenings. I ashamed how much I like the quiet; I know I’m not helping Alex. “Soon, Ned. Alex, let’s hit the bath!”

"This proclivity for screen time might be turned into something we can take advantage of to enhance social skills and learning achievement, especially recent innovations in devices like iPads.”

I’m ready to take advantage of anything.


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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Its been two weeks that Curtis has spent full time in his classroom and as of last Friday, he has also started a part time after care program that the school offers - without any more support than the 25 other kids get; two adults and twenty five kids. It is safe to say that Curtis is in a much different place this year. 

He has matured in a way that takes my breath away at moments during the school day. He has stepped up to the plate, he has been challenged and he has grown from it.  At least two teachers pull me aside every day noting this change.  Last Friday dropping him off at after care is a perfect example that shows this change in character.

I can image that the conversations at home went pretty similar to the conversations that we had at school about it the week prior; he was nervous, he didn't know what to do without support, he wondered why he had to go and so on. Curtis has a small group of trusted adults that make up his support team (larger then he would like to admit though, as I am sure many MANY family and friends would do just about anything for him). But from his perspective, his support team is small but ALWAYS present - going from family support to school support, to home support and back to family support. So, when he asked me what he would do without a 1:1 support person I responded quietly in his ear, as if I was sharing a bad secret, "You will have a blast - that is what you will do without a 1:1 support person". His face lit up and he actually had a little kick in his step at the thought of that.

On Friday after school I dropped him off at the rec tables, which happen to be across the gym from the table that I have for my after school duty -  dismissing kids for their buses. Curtis was re-introduced to the two adults in charge and they motioned for him to have a seat while the other kids slowly filtered in. I got out his drawing pad, a snack and gave him a high five and took my spot across the room waiting for the buses to arrive. He kept a close eye on me, but also tried to muster up the energy to be fine sitting solo until some familiar faces showed up. Once the classes were dismissed and students started coming into the gym either for rec or to wait for the buses he lit right up, sat up extra high and tried to push his fears down. A few of his classmates noticed him sitting over on the rec side of the gym and approached me for an explanation. I told them that today was his first day giving the after school program a try. I then mentioned that they should head over to him and ask him what he was doing, curious to hear how he would respond. One by one his classmates went over to see him and give him a high five. I heard, from across the gym, a scared but strong voice shout back to them when they asked what he was doing, "I am at rec! I am at rec!" I stood there doing my bus duty with the biggest smile on my face. He is doing everything that his "support team" (and the hundred others) have ever hoped for.

Caron, 1:1 School Support

 
 
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Following up on the issue of bullying and autism is this article from time

Standout excerpts include

*In the study, about 46% of autistic children in middle and high school told their parents they were victimized at school within the previous year, compared with just over 10% of children in the general population.

*Many people with autism have trouble recognizing social cues, which makes them awkward around others. They also often engage in repetitive behaviors and tend to be hypersensitive to environmental stimuli, all of which makes kids with the disorder ripe targets for bullies who home in on difference and enjoy aggravating their victims.

*the highest functioning children in the current study were at greatest risk of being bullied. While their social awkwardness was more obvious because they actually interacted more with mainstream peers, this made their actual disability less visible, likely making their condition harder for their peers to understand. Children with autism who could speak well, for example, were three times more likely to be bullied than those whose conversational ability was limited or absent.

*Further, those who were mainly educated in mainstream classrooms were almost three times more likely to be bullied than those who spent most of their time in special education.

*In order to report being bullied, you need to understand when you're being targeted, for example; in contrast, you also need to understand and effectively deploy harassing social information in order to be a bully — things that autistic children generally cannot do.

*"I think of bullying as systematic manipulation. But [autistic children] are so candid, they're typically not capable of that kind of forethought and malice."

*Impaired language skills and inability to read social cues also mean that many autistic children are bullied without ever realizing it or being able to report it. Riley-Hall recalled an incident involving her daughter in elementary school. "Little boys were getting her to say dirty words and laughing at her. She thought this was a good thing and that they were being friendly, but they were really making fun of her," she says, describing how another girl, who knew it was wrong, told the teacher. But until the classmate reported it, Riley-Hall had no idea that her daughter was being bullied.

* But despite efforts to encourage inclusion, acceptance of students with disabilities remains low overall. "There's still a sense that they are not as fully human as other people," says Riley-Hall. Another factor that often leads to exclusion and derision is fear. "We have many generations who have had no personal experience with people with special needs, and they fear them," Riley-Hall notes. "They pass that ignorance on to their children."


Okay, so that's most of the article. It seems that despite our best efforts as caregivers, a child like Curtis, high functioning and integrated into a regular classroom, is highly likely to be bullied. For now, his community is mostly welcoming, but there is that fear of what life will be like when he doesn't have an adult around. We all know there are kids looking for an reason to bully and the social awkwardness of autism, while charming to many of us, are fodder for abuse for your average school bully.

I've seen first hand the example of getting a child with autism to swear because they'll just do it. I've seen this play out with Curtis where he thinks he's being included but he's actually being used. I haven't seen a lot of it, but the potential for that sort of thing is always there. And despite our best efforts to have our kids included, it's a long uphill better to get the other kids to see kids on the spectrum as equals.

Greg, Dad

 
 
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We were recently contacted by an author with book signings slated for Maine later this month. Good luck, Greg. We plan to stop by your Freeport signing. With resistance from Curtis I'm sure. Because he's never been to a book signing that I remember. So naturally, he won't want to do it. He is quite familiar with chicken finger meals, however.

Author: Gregory Allen

I am writing to tell you about a new children's picture book on autism awareness that just came out this spring. The book won the MeeGenius Publishing People's Choice Grand Prize award and was published by them after 6 weeks of the country voting on it against 400 other manuscripts.

I wrote this superhero with autism based on my godson. I spend every Wednesday night with him at his favorite restaurant (where he always eats chicken fingers) and came up with Chicken Boy: The Amazing Adventures of a Super Hero with Autism. The book is told through the child's point of view to teach others not to fear someone who may be a little different from them.

I have been traveling to different schools in New Jersey (where I live) reading and talking about the book and will be in Maine later in June. Here is a link about the book offered in both print and digital format:

http://asdpublishing.com/childrens-titles.htm

I'll be signing copies of my books at the following Maine locations:

Sat, June 23 Bath Book Shop 11 am-1 pm Bath, ME

Sun, June 24 Tugboat Inn 12-1:30 pm Boothbay Harbor, ME

Mon, June 25 Freeport Community Library 7-8:30 pm Freeport, ME

All kids are superheroes...but those living with autism hold a special place in my heart.

Story on Chicken Boy: http://www.northjersey.com/arts_entertainment/142662116_Author_wins_top_prize_in_contest_.html



 
 
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Helping Curtis to build his internal independence and motivation is a goal that is pretty crucial at this point in his education and home life. With the transition into 3rd grade right around the corner and the numerous team meetings (IEP, triannuals, etc.) that we've have had recently, the plan is largely in place. My goal is to create a smooth 3rd grade year and to boost Curt's internal pride and motivation separate from his support.

In the large picture - Curtis has come a very long way from the scared, timid boy whom I met at Easter Seals three years ago and who was getting 2:1 support. He use to bolt during all transitions, he did very little socializing and if left to his own devices, he would connect snap cubes for hours or write endless numbers on top of numbers. His school work was unreadable and done with little care. Sometimes I forget about this and get very future focused but it's worth revisiting as it paints a large, powerful picture of what support and clear goals can do for a student like Curtis.

As mentioned above, a current goal is to boost his independence and internal motivation - i.e. get Curtis to do what's expected with few reminders. Tools used include a system I call "two before me" where he needs to ask at least two other people (peers or his teacher) questions about school related issues/academics before he is able to ask me. He also has cue cards for five certain blocks in the school day where I noticed I was repeating a lot of directions. Now he has a card in front of him with the expectations so my voice can be omitted and he can work to figure things out on his own.

However,  even with all these tools and goals in place - bits of Curtis's struggles still surface daily. This morning for instance he had his cue card in place, he had a friend working beside him and I gave him a reminder of what was expected (completing three math boxes as his morning job - done every morning). I had to run out of the room for a minute to grab a photo copy and when I got back nothing was completed that wasn't completed before I left. When I noticed this and checked in with him as to why he had not done what was expected his response was, "I got stuck and didn't know what to do, so I drew you a maze - see?" Comments like this do remind me of how much work is still ahead both 1:1, among the class and internally for himself but the tools and goals still will guide the way and he will make large jumps, as he always does.

Caron, 1:1 School Support