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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.



 
 
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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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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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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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Curtis took on the first day of 3rd grade like a champ. So much happened, so many hugs were given and so much love was felt that needed to be shared before the first day back giddyiness passed - because inevitably, it will.
The honeymoon period will give way to rules and expectations to be followed against his will and the gas will run out and socializing will not seem as fun and interesting as it did today. But, this 3rd grader was on cloud 9 all day long and was beaming from ear to ear. He even gave the principle a double high five, which says a lot.

I saw Curtis walking up with Greg at 8:35 sharp.  My plan was to meet him in the gym like I also have but when I saw him walking up the school walkway I could not wait to get out there and give him a hug.  I could tell he was nervous.  He walked circles around me for the first 20 minutes speaking about fruit roll ups, summer reading books, pencils he found on the playground, play dates he had, what he did on my birthday that was in July, his dad's plane trip to New York, his new blueberry waffles and the list goes on.

I gave him about 20 minutes to just vent his nerves out but then I wanted to transition him into his class before the breaks came out and before he even knew what I was doing - timing is everything with this kid!!  At first he was glued to my side, holding my hand and giving me hug squeezes, but after a few reminders of my own personal space and his own personal space he was engaging with his friends and just eying me out from across the room with occasional stories or facts being tossed my way.  For the first time ever, Curtis spent the entire day with his class - he laughed and learned along side them and he felt like a 3rd grader and commented on that feeling many times throughout the day saying how "good it feels".

Granted, it is the first day and he is in the honeymoon stage -  but he did not need one break. If he needed to go get some water from the fountain by the office, I did not  need to accompany him as he has secure friends in this class to walk with him. He drew roads to sooth himself when he needed to, but only used up 1 sheet of paper - which also says a lot. His entire lunch box was empty by noon, but I had back up pretzels to keep him going. And at the end of the day, he said goodbye to his teacher and a female friend in another class, an improvement from the past as goodbyes have never been his thing.

Curtis is a creature of habit and it was my goal today to show him what a day like this could look like and feel like - to show him that this is also an option for a "habit".  At the end of the day we spoke about this accomplishment but we also spoke about how its okay if and when he needs those breaks.  However I will not be putting them into his daily schedule as I have in the past.  We will only use them when needed - he may be in a groove this year at 11:45 and not want to take a break and the last thing I want to do is pressure him to pull away if he isn't feeling it. The bar is being risen a bit this year but I can tell when I look at him that he both wants it and needs it and I am so happy to along side him again during this year of growth.

Caron 1:1 School Support

 
 
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Building Buddies

We have a moment with my son Alex one evening after bath time. (He'll be 14 soon and still has a "bath time"!) The witching hour of bed time (he still has a bed time!) and Alex won't go to bed.

"Alex, bed!""Two!" he says. "Two, two. Red two!"

By the dining room table sits a box of Legos that Ned left there. Alex charges toward it, but it's time for bed and there's no time for Legos.

"Alex, bed!"

Alex does this thing when he's pissed: He lunges with his forearm in his mouth. He bites and -- this is incredible to believe considering his weight of about four sticks of butter when he was born -- he slams into me and sends me back a step. I push back harder than he expects I will, I think, and his foot catches on the chair nearby and he wobbles.

"Alex, go to bed!"

You can't say he started it, not really, my wife Jill will later claim. No, but I don't like getting shoved and a lot of other people don't, either, and Alex needs to learn that even if he is pissed and biting his forearm.

"Red two!"

I have no clue what this means as he begins raking through the plastic Container Store bin of Legos. His hands rasp and rasp through the Legos until the sound drives me ask what I find myself asking all the time, if seems: "Alex -- what??"

"Red two, red two!"

Up comes Alex's younger brother Ned. I turn to him like Kirk turns to Scotty when stuff begins to happen to the Enterprise. "Ned, see if you can find out what he wants, please?

"Ned, who is typically developing, bends down. The brothers paw through the Legos while I hold the flashlight and we all want to go to bed except Alex. It begins to feel like a moment when it's hard to believe this time won't mean a thing someday.

"What'cha buildin', buddy?" Ned says to Alex, plowing right in and raking and raking with his older brother. Alex comes up with a few red ones. Ned looks at him. "Two," Alex says. "Two."

"He's building a two!" Ned cries.

Yes he is. A couple across and a couple more diagonally and a couple more across and there's a two. It does look more like a Z, but I've learned you take what Alex can give you when it comes to autism. He then makes a one that looks a lot like a seven, but I say nothing.

"Cool, Alex!"

Alex takes the new Lego letter and number to bed -- he won't, in fact, go to bed without them -- and he wriggles down under the blankets and goes to merciful sleep only when the Lego things are beside him.

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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I had a dilemma a couple nights ago. My baseball team was scheduled to play a single elimination playoff game, Laura was working, and I had no coverage for Curtis. Game day arrived and the situation was unchanged. With only 11 players playoff eligible I felt like I had to be at the game, so his mom packed him a bag with snacks, materials for drawing, his Leapster, and a trusted stuffed animal friend. There was no way to tell how it would go. Curtis and I picked up the teams shortstop and were on our way.

It was a night game, 7pm start so I was going to be pushing it with bedtime but that was just the start. I'd be spending half the game in Centerfield and Curtis would be beside the dugout, about 15 feet from a road with heavy traffic. A couple of years ago this scenario would have been impossible. Even now it made me very nervous. There was no one designated to watch him while I was in the field. The situation felt like a bit of a roll of the dice though I was confident he'd stay relatively still while I played defense.

I then spent 70% of my time in the field watching Curtis and 30% watching the game. I thought about how quickly I could make the run if he decided to walk toward the street or if I would yell at the shortstop or 3rd baseman to head him off. Good thing I'm in the outfield. I had more time to think about these things. The only defensive repercussion was when I caught a line drive in left center and completely spaced that there was a runner at third base. He scored easily.

For his part, Curtis was great. He sat on a patch of grass with a batting helmet on and did his thing. He didn't watch me at the plate when I hit because he doesn't give the first sh*t about baseball. Even later in the game when excitement was up and people told him his dad was hitting, he'd throw a quick glance my way and go back to what he was doing. I knew this, and there's a certain comfort level in how he "watches" me play. I'm not his hero if I get a big hit, he's not disappointed if I strike out. He doesn't care and I'm cool with that. He finds baseball insanely boring and he's hardly alone but his dad loves it so he's gotta deal.

A saving grace came in the 4th inning when the team's elder statesman (who has been battling a back problem) showed up sans uniform with his ten year old daughter. Curtis knew the girl, Bridgete, and she laid out a blanket for them to sit on. She agreed to play tag, still his favorite game, and they colored. She cheered for me when I batted and Curtis occasionally pretended to care.

In the end it all worked out great. The team had an improbable win and I had a decent game ( 2 for 5, 2 runs, SB) but it's not a scenario I'm eager to repeat. Curtis is aware of traffic now that he's about 8 and a half but he's still not fearful of it. He still doesn't always look when he approaches the road without some prompting. But I got to play and contribute and he got some good social time in. He even started to feed on the small crowd that cheered us to a victory. We seriously had about a 10% chance of winning the game and we puled it off.  Definitely a win-win. Now the team has advanced and my next game is scheduled when Laura works. Anyone want to babysit?

Greg, Dad

Also, I came across this video on youtube of a kid with autism pitching. Check it out. The kid is stinking cute and his timed delivery and facial expressions are adorable. He also racks up three strikeouts!

 
 
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The Wrong Bus 

The phone rings at 10 to 4 on Friday. My typically developing son Ned answers it. “It’s Alex’s bus!” Ned says. “It’s downstairs!” 

Shouldn’t be. Alex catches a different bus from his school and that takes him to an afterschool program about 10 blocks away. Some 13-year-olds with autism could just walk those 10 blocks, but Alex can’t. From the program, another bus picks him up and brings him home at about 5 o’clock.

“Tell them I’ll be right there!” I say. “They’re not supposed to be here!”

When I get downstairs there the yellow bus sits, cars zipping down Fifth Avenue and ignoring her blinking red flashers. “I dunno,” the bus driver says. “They just brought all four kids out to us together…”

I call the unit teacher, who’s there almost two hours after school has ended. “Thank goodness you were home,” she says. “On behalf of the entire school staff, I want to apologize.” I call the after-school program to see if they were open and I didn’t miss some important flyer. The lady at the afterschool program utters the words that many who work with the autistic say when they hear “wrong bus”:

“Oh my god!”

Alex’s school has been getting this busing arrangement right for weeks. What happened? I don’t even think of asking Alex as he turns on his iPad, claps on his headphones and begins to watch Elmo. “What happened?” I ask the unit teacher a few days later, in the e-mail she requested. “Thanks for your understanding in the matter and I assure you that this will not happen again,” she writes back. Later, a teacher from Alex’s school calls; she was in charge of busing on Friday. She apologizes over and over.

I trust them – trust them more, I often think, than I’ll trust other people who will care for Alex in one way or another before I die. Slip-ups do happen. It was only an hour and technically it wasn’t even the “wrong” bus, but it does open a dark door.

“Ned,” I ask, “what would you have done if I hadn’t been home?”

“I would have gone downstairs and brought him up,” he says. Luxury, I admit, to have a back-up like that.

The dark door opens on stories of kids like Alex left on a bus long after hours, stories of kids who pinball down sidewalks while state police radio each other and strangers look on wondering why in hell someone doesn’t corral these people. Once Jill was on the subway with Alex when he sprinted to another seat at the other end of the car. Imagine if he hadn’t bolted toward a seat but through a closing door of the subway car? Imagine the glimpse of his back down the platform while the subway door slid shut in Jill’s face, trapping her in front of the window as Alex vanished up the stairs and into the endless streets.

I have no idea if my 13-year-old boy could get off the school bus by himself, walk through an apartment building lobby, press an elevator button, and come home. I like to think he could, but I don’t have that luxury.
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 and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”