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

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.

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.

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.

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

Denial, Anger, Bargaining, Depression, Acceptance

These five stages of loss and grief are typically experienced by someone who loses a loved one when they pass. But for Curtis, who thus far has handled deaths of family members much more matter-of-fact than typical kids his age, it was a different kind of loss that brought about these stages of grief.

Up until a couple months ago, Caron was the only ed-tech Curt had ever had at school. She was there nearly every day for kindergarten, 1st grade, and 2nd grade. The person he could depend on to help him get from point A to point B, to explain the teacher's directions when all the other kids seemed to understand, the person who would lead him out of the cafeteria when it was too loud, the person who fostered relationships with other students when he couldn't figure out how to do it on his own. She was the person who stopped him from bolting out of the school when he was five and had him walking with his class and making friends over the next few years. To him, she was a huge part of surviving the school day when confusion loomed around every corner.

Denial: When Curtis learned in early November that it was time for Caron to move on professionally and that she would no longer be his ed tech he refused to believe it. He wasn't defiant, he wasn't particularly upset, he just believed that when push came to shove, Caron would still be there when he showed up that Monday after Thanksgiving break. Not only could he not imagine her not being there, he wasn't even willing to accept it as a possibility. He needed to see it to believe it and his defense mechanisms were on full alert. He denied the possibility that he would be going to school without Caron right up until that Monday following the break. He met his new ed tech with a quiet hello and an expression of concern as to what school would be like without his trusted confidant.

Anger: It didn't take much time after school resumed for denial to give way to anger. He hated Caron, he hated his parents and family, he hated his friends...there was enough anger for everyone in his life at this point. This wasn't expressed at school, where he is more likely to clam up than lash out, but it was prevalent at home and quite hard to deal with. What he was expressing as anger was clearly hurt that things weren't the same anymore and he missed the teacher and friend that had always been there for him. We had prepped him for a long time that someday he would have a new ed tech. and hopefully one day, not require one at all. But like most kids he lives in the moment...and getting by without Caron wasn't something he anticipated dealing with until he had to. But she was gone and he was pissed...and most likely very scared.

Bargaining: This is the only stage of grief not applicable to this situation. He never really believed Caron was leaving until she was no longer in the school and to my knowledge, never attempted to bargain for her to stay. He had questions and all kinds of concerns but attempted no bargains. Once she was gone, he knew she wouldn't be back. At least not in this capacity.

Depression: Curtis has a new ed tech, Miss Mallory, and she's been terrific. But in the days and weeks that followed Caron's absence he clearly mourned their relationship and exhibited aspects of depression. He said things like "I don't like my life anymore. I want to start over." He was more quiet than usual, would sometimes break down and cry, appeared slightly withdrawn, showed a loss of confidence and even mentioned a desire to hurt himself.

We knew he was getting used to a new situation and that this "depression" would likely be short-lived but as a parent, it's a difficult thing to experience. You only hope it's short-lived and that some of the things you are saying and doing are helping.

Acceptance: As we begin 2013, Curtis is working his way towards acceptance. Part of the reason Caron felt comfortable moving on when she did was because Curtis has some great friends in his class and they have been instrumental in getting him back to his old self and able to feel comfortable at school even without his trusted guide. Part of his frustration was centered around the fact that Caron knew him so well. She knew when the lunchroom or music class was too loud or when he needed a break or that he needed help tying his shoes and now he had to start from scratch with someone much less familiar with what makes him tick. But he has slowly been accepting the fact that in life, things change, and they don't always stay the way you want them too. It's a tough lesson but one that we all learn and his parents could hardly be more proud of him for braving through what's been the hardest life change for him to date.

For as long as I have known Curtis he has done some form of yoga. It has always been a good activity to get his body to calm down even when his body seems beyond his control. When he was younger, we did one of his Yoga Kids DVDs almost every evening to wind down. In the past year or two Curtis had not spent nearly as much time doing yoga as he had previously
- until now.

This past Halloween, Laura and I took Curtis to his first Kid’s Yoga class. Laura knew the teacher and spoke to her beforehand to let her know what to expect. We told Curtis that he could just observe this first class to get a feel for it. When we arrived at that first class, we happened to be the only people that showed up for the session. Curtis spent the better part of 20 minutes regressing into some outdated behaviors like bolting and hitting. He wasn't prepared to be the only student in the class and the circumstances likely proved too much to handle. Eventually we decided it would be best to remove Curtis from the situation and go home.

On the next visit, we raised the expectation for Curtis that he was to participate in three poses. Curtis ended up doing more than three poses that night but eventually got a little rascally and was rude to his yoga teacher. He also refused to participate in any conversations with anyone there. When we returned the following week it was pretty much the same scene as the
previous week with the exception of the conversational pieces. Curtis and I practiced some questions and answers after school that day and participated in 2/3 of the discussion.

By the fourth week Curtis was no longer fighting us to get through the door. He had a rough start to the class but after I pulled him out and talked to him about the other kids there he did better. It just happened to be the only other student’s first time doing yoga so Curtis was able to pull together to help the other kid. He also resisted the relaxation exercises at the end of class up until this point. When he did participate this week you could visibly see his whole body go calm.

Today marks the fifth yoga class and I can honestly say this week I enjoyed the entire hour at yoga with Curtis. This class had many more children than previous classes. He was crowded in and the teacher changed the 7 core poses that they had been practicing in the past classes. Curtis tried his hardest the whole time and for the first time was the teacher in “Yogi Says”, a game where the students lead the class through poses. With any new structured activity Curtis had a rough start, but hopefully these past two classes are an indication he is turning the corner and will look forward to yoga in the future.

Jamie, 1:1 Home Support

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

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.”