Archive for Amazed & Awed

Open Letter to Lake Howell High School

I wanted to find a way to thank Lake Howell High School for the amazing experience CJ has had for the last six years. Posting an open letter was the only way I could think of to reach as many people as possible. So, here it is.

Dear Lake Howell High School,

I wanted to write this letter to the whole school from our whole family. The last six years of CJ’s life have been some of the best of his entire life. From being in the dugout at baseball games to the side lines of the football games, his life just gets better and better every year. CJ thinks he owns the school and it is all because of all of you. The administration, the coaches, the teachers, the assistants in his class and most of all the students. You have all accepted him as one of you and treated him like a rock star.

The football game that he got to play in was a highlight of his life that he still talks about. Working in the cafeteria has made him feel like he has a purpose. He loves being on campus. He loves the bus drivers. He loves everyone there so much. I wish I could name everyone of you personally.

Not all kids with special needs are treated the way CJ is at school. Not all schools go the lengths that Lake Howell has to make him feel included. I know when his class first started there everyone was nervous. It only took weeks for everyone to realize that CJ was really just one of the guys and for everyone to treat him like one.

There is not enough money to buy what CJ has gotten at Lake Howell High School. I wish there was some way to shout to the world how wonderful Lake Howell is.

There is no way for our family to begin to thank everyone enough. Lake Howell will always be CJ’s school and he will miss everyone more than you can ever know.

Thank you.

Kathleen Williams, aka, CJ’s mom

College Summer Experience

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Well, it happened. CJ went to college, at least one summer session of a college experience at the Arc Jacksonville. He had never been away from home for more than four nights. The was four weeks. FOUR WEEKS!!!!

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His room with all things green

We applied and I waited anxiously for an answer. I’m pretty sure we were one of the first applications. I waited very impatiently. We got our answer. He was in!! We went and toured the apartments and met the people involved. CJ liked the apartment and was excited. We got the supply list and I was off. I made the obligatory trip to Ikea and they cooperated with all things green down to green picture frames for $.99. I packed, checked off lists and loaded the car.

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The pool where the girls were

We got there and went to the parent orientation. We went to his apartment and he told me good-bye. What?? Nothing is set up. It’s MY job. I need to prove I’m a good mom. Well, OK. I could set up. We had almost 3 hours. It took 20 minutes. The other parents were still setting up. We waited around. He told us to leave, multiple times. Finally, we did. I was all prepared for the flood of emotions. They never came. He was fine, so was I.

I knew he would want to tell me good night and I wanted to reassure him that he was fine there. He hadn’t called and I wanted to catch him before he went to bed, so I called him.

Me—Hi. How are you?
CJ—I’m talking to a girl. I gotta go. I’ll call you in the morning.

Only, he didn’t. He was fine, really fine.

The pattern continued with me calling him begging for information, him having to go. He did talk to other family members and friends, usually over FaceTime. He was always having fun and usually had to go as “the guys” were leaving or there was a girl involved.

After week one, I got a report. It said he likes girls, check. He ate all his snacks the first day, check. He ate other people’s food, check. He was having a great time and loves hanging with the guys, check. Everything was going as expected. Better than hoped for.

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Cooking dinner

He had to menu plan, shop and cook. They took field trips to a baseball game, the museum, the zoo and the movies. They rode the bus and practiced crossing the major intersection near the apartments. He loved everything. I never heard a complaint.

I got week 2 and then week 3’s reports. The consistent theme was that he ate all his snacks day one and ate other people’s food.

I couldn’t reach him about midway through. It turns out his phone went in the pool. I guess he’s more normal than I give him credit for.

The weeks flew by. It was time to come home. It took longer to get out than it did to drop off. Stuff was left in his room and I had to go back in twice. His keys were lost and then found. His wallet had been missing for two weeks. The big problem with the wallet was that his ID was in it. I was starting to wonder if it was all a ploy to stay.

We left and came home. The whole way I was anxiously hopeful that there would be changes. It was instantaneous. He walked through the door and everything went back to the way it was. I was crushed. All that and nothing…or was it?

He does his own laundry. He comes with me to the gym and rides the bike for as long as I’m there. He cooks when someone else comes to cook with him. He won’t cook with me, but I am his mom, after all.

He talks about it all the time. He tells everyone how great it was. His favorite thing changes from the pool, to the apartment, to the zoo, to just hanging out with the guys. He wants to go back. He won’t stop asking when he is moving. Not “if”, “when”.

School has started for his final year. The countdown has begun. It’s not as scary now. There is hope where there was none before. The best part is that things are more normal than I ever thought possible.

TeachLivE 4– A Little Too Real

TeachLivEThere are times when you feel like you have entered the twilight zone. There are times when things that aren’t real feel just a little too real.

A few weeks ago I attended the 4th Annual TeachLivE conference and entered an all too real virtual reality that I was unprepared for. I was especially excited as they were going to unveil the new kindergarten avatar modeled after CJ. I had been working with the young, future PhD, also known as CJ’s former teacher, to develop him. I had provided evaluations, videos, photos and feedback to make him as real as possible.

I loved getting preliminary drawings and giving my input. He, once again, looked remarkably like CJ did back then. He does not wear green as back in the day, CJ did not always wear green. I had seen photos of the avatar and had heard what he would be able to do. He was still in development, but they were going to unveil him to the public.

The learned their lesson last year and I was NOT speaking. They mentioned who I was in the opening session and I waved my hand. No one would even remember. I was safe and incognito this time.

The breakouts began. They had stations in a large open area. Each station had it’s own screen for presentations and casual seating, but was open to the entire area. I sat front and center so I could take some video. I was really excited. I’m a pro at this. I’m ready.

Kindergarten AvatarsIt starts with a little girl and kindergarten CJ, who goes by Martin to protect the innocent. They were sitting on a rug in a kindergarten classroom. The little girl is vivacious and talkative. She “helps” and just can’t stop herself from answering for Martin. (Reminds me a little of me.)

They ask for volunteers. One of the PhD’s got up and interacted with them. She tried to engage Martin several times. He would hesitate and hem and haw. The little girl would interrupt to “help”. After three tries, the PhD just switched to the little girl.

I was a little disappointed. These were teachers, PhD’s, PhD’s who teach teachers. It was only the first one and they were only testing it. They weren’t set up to teach a lesson and not all of them deal with children this young or ESE students.

The second person got up and only tried once to interact with Martin.

A strange thing started to happen. I started to get upset. My Mama Bear was starting to rise. I wanted to step in and I wanted to explain. I wanted to protect the avatar.

Now my internal dialogue starts.
“It’s an avatar.” “It’s not real.” “It’s not CJ.” “They are not used to doing this with this avatar.” “These are professionals.” “These are only a few minutes each.” “This is not real.”

Kindergarten at tableThe third volunteer gets up. She actually kneels down so she is at eye level with them. The technology allows the interactor to see where you are and where you are looking. She starts out prepared to get both of them engaged. She tells them they are going to write a story together. She says it starts out, “Once upon a time.”. She asks Martin to think of a person, place or thing he sees. She quickly realizes she has given too many options. She ends up asking him what animal he has seen. The little girls keeps trying to “help”. The PhD keeps telling her that they are going to give Martin some time to answer. Martin rocked back and forth. Martin repeats, “See. See. See.”

I was so excited that she was going to be able to draw him out. She obviously has worked with this age. I was impressed. Then she decided to help him out. She says, “The animal starts with a C? It must be a cat”.

OMG! NO! NO! NO!!!

I take a deep breath and narrowly escaped my outburst. She is trying. There is a large group watching. I have no way of knowing her experience or expertise. I have myself under control now.

She now wants to know the cat’s name. Martin rocks back and forth again. He repeats, “Cat. Cat. Cat.” I’m holding my breath by now. The tears are welling up and spilling over. The PhD decides he wants the cat to be named Cat Cat. I jump up and run out. The bathroom is right behind me. I leave all my stuff there. I can make it. I can do this without making a scene. Or not…….

My voice breaks as I really start to cry. I run into a bathroom stall. I have been thrust back in time. It was a true PTSD moment. I had so many memories flood over me. I thought all this was safely filed away in labeled folders to only be opened when I needed some information.

I just wanted to scream at the screen, at everyone. I wanted everyone to see how he was trying. He had an answer, he just couldn’t get it out. I wanted to protect him. I wanted to make them all understand.

I got myself together. I come out of the stall and the UCF genius creator of TeachLivE was standing there. She was alerted to my breakdown. So much for no one noticing my “quiet” exit. She got it. I told her that they didn’t understand, that they weren’t listening. I was completely irrational trying to explain what happened. She got it on every level. Her son has Tourette’s and is now in college. She remembers her son. She knows, she really knows. While we were talking in the bathroom, because where else do you talk at a PhD conference at a University full of conference rooms, another PhD came in to check on me. Once again, my nice quiet exit.

The genius comforts me simply by getting it. She wants me to know how valuable this is.

Session 2-

Now I’m standing in the back as there are no more seats, which may be a better place for me. A PhD came up to me to tell me her future ESE teachers need this. She thanked me over and over. She said her teachers will do what the PhD’s did over and over and ignore the ESE child. She said this is a safe way for them to make mistakes and learn. I know all this, but it doesn’t stop the pain.

As the day goes on several people talk to me to thank me. They are really excited about the possibilities for this avatar and the others. I decide if the prospective teachers can manage even a fraction of the suspension of reality that I felt, it will be amazing. What if even one child can be spared the pain? What if even one parent can be reassured? TeachLivE just continues to change the world.

Being CJ’s Sister

Keep Calm BrotherSince my blog is designed to showcase life with CJ, it is easy to forget that CJ is, in fact, part of a family, not the center of his own homecoming king , football star , media hound, own private avatar world .  CJ has a sister.  A 13 year old, glorious long haired, smart, sassy, gets the grades, cheerleader, tumbling, “Don’t touch my stuff”, funny, full of attitude younger sister.

She annoys the crap out of him and he returns the favor. In fact, he “ruins her life” on a regular basis, but not for the reasons you think. Elizabeth has never known a life without CJ.  A life without adjustments for autism is unknown. It’s not even relevant.  CJ is her brother just like the sky is blue.

He irritates her. He steals her candy. He cramps her style, gets in the way of her social life and he is rude and obnoxious…which is exactly what I said about my own siblings, growing up.

See, she knows that our lives don’t always look like other people’s lives.  She gets that on a mature level that fills me with awe at times.  But she doesn’t think that special needs make you different, because you are you.  Period.

Most adults don’t get that.

She has a friend with Downs Syndrome.  She gets so mad when her friend gets a “pass” for her disability that let’s her get away with stuff she shouldn’t. She has actually uttered the words, “Bonnie is just like everyone else.  She is no different and it is not OK for her to get away with it.”  It may sound a bit tough at first, but think about it.  Elizabeth know exactly what Bonnie can and can’t do, and she’s not looking at Bonnie any differently that any other friend working the system.  She sees the whole person and not just the overlay of the disability.

I let Bonnie’s mom know that she is “just like everyone else”.  She loved the moment.

Elizabeth has started taking some creative writing classes, and I’ve encouraged her to add her voice to the family story by writing about her life, and part of that includes life with CJ.  So today, she’s my guest blogger.

Here, in her own words, is a slice of a 13-year-old’s life with a brother’s autism.

“Many of you don’t know this about me, but I have an autistic brother. I’m sure you are wondering what even is autism? Well, no one really knows what it is, but we have found out that it is an intellectual learning disability. This means that it takes longer for the brain to comprehend things then an average brain. This is not a disease, it’s not something you can spread, cure, or catch. It is something you are born with. It is very different for everyone who has it. It is not something someone “suffers” from. It is a pretty amazing thing.

Some people that have it are socially awkward, but some fit in perfectly fine. In my brother’s case, it is a blessing. He does not “suffer”.  He has had some pretty amazing things happen to him because of this. He has met incredible people and done things that an average guy would not have been able to do.

My brother’s name is CJ and he is 20 years old. He goes to Lake Howell High School. This is his 2nd year being a senior. He still lives at home, because he can not be left alone. He is not able to call 911, if there was an emergency. So, he still lives at home when most normal 20 year olds are out of the house. We are making CJ as “normal” as he can be. He is currently working on getting a job, as many 20-year-olds would either have a job or be working on getting a job.  We have also, been working on moving him out of the house and into more independent living for the past couple of years. 

What is it like having an autistic brother? Not very many people have asked me that to be honest.  If I had to sum it up in one word, I would say amazing. It is pretty amazing having an autistic brother because I get to do some pretty cool things and be part of an amazing world. I get to see him and his friends change to become better people.

CJ & E FSU on Couch about 3When I was little I didn’t really think CJ was very different from anyone else. Then, I gradually started to notice that my friends brothers didn’t need someone to stay with them at the house. Their brothers were different or that CJ was different then them. I don’t really see it as a bad thing. It’s just hard sometimes when we want to do things or I want to have my friends over to the house. My house is not quiet. It’s never quiet. Some of my friends get intimidated by CJ, but most of my friends like him or just don’t really get bothered by him.

I get really offended when people talk about autism and they aren’t a scientist. They talk about how it affects people or how it feels to have it. I can get really worked up about it. It also bothers me when my friends talk about CJ in a bad way. It’s like I’m the only one that can talk about him that way, you know? I have told some of my friends that I don’t like it when people talk about CJ like that and they say that they are the same way with their brother.

I get very protective about CJ. Even if someone looks at CJ with a nasty look, I get pretty protective. One time I was ranting on to my friend about how annoying CJ was being and he asked me, “What kind of things does he do that make you so mad?” .  When he said that I wasn’t really sure what to say, because it’s complicated to explain. When I say what he does people don’t think it’s that bad, but when he does it everyday for years and years and years it gets old and irritating pretty fast.

CJ had never been away from home before until a few years ago what he went to his first camp in the summer for a weekend. He did awesome and so did the rest of my family. We got to be away from him and alone for more than a couple of hours. Then, a few months later, there was another camp and this one was for almost a week. As soon as my mom heard about it, she quickly signed him up, because he loved it so much. He did great on that too.

Now, for a couple of years we have tried to sign him up for as many camps we can in the summer. Some are for a weekend, some are a week and some are day camps. Well, this summer we found a camp that is at a college campus and is for 4 weeks. We signed him up as soon as possible and the other day we found out that he got in and is going. We also found out the he is eligible to live at an assisted independent living place in Jacksonville. This is going to be such a new experience and is such an amazing thing.

Kids on Field

Now, there are a lot of incredible things about being CJ’s sister.  When I am at the high school I am automatically known as CJ’s sister.  It’s okay to be known for that, because a lot of people know who I am so I already know the football players and baseball players. It’s a nice way to get my name around. I also, get to know people like Blake Bortles. He is a pretty great guy that does amazing things for CJ and our family. Also, I have met a few of my friends through CJ, like one of my best friends, McKenzie. Her brother did Challenger with CJ so we started talking and hit it off. My friend, Hollyn’s, brother also did Challenger with CJ.

I’m okay with one of my titles as CJ’s sister.  CJ is basically a rock star and pretty much everyone loves him, so being known as CJ’s sister is not a bad thing. Most things that CJ does most brothers do so I can relate a little bit when my friends and I are complaining about our brothers. Being CJ’s sister is a pretty great thing, though. I get to learn about different types of disabilities that people all over the world have.

I have learned so much by being CJ’s sister. I have learned about how to be patient, not only with CJ but with other kids also. I have also learned about autism, especially and things like Angelmans Syndrome and Down’s Syndrome. So to sum this all up, being CJ’s sister is pretty cool. I would never be the person that I am and know the things that I know if it wasn’t for him. I love you CJ.” Elizabeth Williams, age 13

Sometimes you forget how cool it is to have a 13 year old teenage girl who can really understand and love this much.  I love you both!

CJ the Avatar

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What’s better than one CJ? Two CJs!! Even better is when one of them is a computer image and can be controlled and even turned off when he becomes too irritating.

Ever wish you could just use a remote to turn your kid down, pause them or even turn them off? Well, now we can with CJ or Martin. Sadly, it is only the computer version.

TeachLivE has been working with avatars trying to cover as diverse a population as possible. They make them look different, act different and respond different. The idea is to give prospective teachers as broad an experience as they can. Because they haven’t tortured these poor future teachers enough they decided to throw a little autism their way. Nothing like some special needs to spice up a classroom.

More and more special needs students are being mainstreamed or included in regular
classrooms. Teachers are expected to work with students who have a range of special needs requiring a range of accommodations. TeachLivE now can include Martin in the classroom with the other students. Martin can act as neurotypical as they decide or he can exhibit behaviors common with autism. He can hit himself. He is the first avatar able to get up out of his seat and walk to the back of the room. He can jump up and down and flap his hands, behaviors that look so much like CJ, it sends chills up my spine. His smile is dead on. He wears khaki shorts and a green t-shirt. His shoes even have the elastic laces that changed our lives. http://autismmovesout.org/autism-tying-shoes-tangled-up-in-knots/

Martin

Martin

The first time I saw Martin and the behaviors he could exhibit, I cried. This really is something that can change lives.

 

 

 

 

 

 

2nd Annual TeachLivE Conference

The 2nd Annual TeachLivE conference was coming up. I was invited. It was after school got out. My husband was off, so we all went. They want to know if CJ will introduce Martin. Well….maybe….we can try.

We decide that I will go up with him and he can at least just stand there.

CJ with Martin

CJ Meets Martin

I’m getting ready that morning and I get a text. How would I feel about talking? Talking? Normally, I love to talk. When? Today. Today? How long? 2 minutes. A room full of PhD’s and I am supposed to talk about our experience with TeachLivE. OK. I can do that. I have an hour to prepare after all.

Apparently, there has been an issue of ethics brought up.

Ethics

When you are doing research that involves people, especially people with special needs, there is a concern that they are not being exploited. Oh. This whole time I thought we were using them. I didn’t realize anyone would have an issue with us benefiting to this degree for nothing. I think it through. I guess people would be being “exploited”. dictionary.com defines “Exploited as “to use selfishly for one’s own ends” and “to advance or further through exploitation; promote:”. I could only think that we were “exploiting” them WAY more than they were “exploiting” us.

At the conference, they explain who CJ is and the avatar. I go up and CJ stays in the back holding up the wall. He is “fine”.

I start talking about our experience. I talk about how I have seen my child change. I tell the story of him asking Maria on a date. I tell about him asking all the girls at school on dates. I tell about having TeachLivE in our house. I tell about how he was having conversations. He was the one initiating them. I tell about how he wants to go to UCF at least once a week. I tell how UCF “needs” him. I tell about how people have come up to me over and over asking what is going on with him. Why has he changed so much? What are we doing? Other special needs parents want to know what it is and how they can get it.

I talk about the ethical issue that I was recently made aware of. I explain how I was so confused. I explain that there is no way to explain to anyone how desperate parents are. There is no way to explain the lengths that parents will and have gone to to help their kids. What if one more thing, one more service, one more therapy could make that difference? What if something, anything could improve your child’s future? What if one teacher is changed? What if one kid is more accepted? What if one more kid is included? This won’t just change CJ’s world, they could change the world. Dead silence. I’ve gone over. WAY over. 9 minutes 20 seconds according to my daughter’s video. I’ve taken it too far. Me and my big mouth. No one stopped me. The genius educator and engineer are sitting in the front row. Why on earth didn’t they cut me off? People begin to applaud. I think they liked it.

They take the microphone to the back where CJ is still holding up the wall. He answers a few questions and then escapes.

People continued to come up to me afterwards and thank me for sharing. Several told me they wished their administrators could have heard me as it is difficult to explain why they want to use TeachLivE.

Relief! I wasn’t a complete flop!!

 

CJ with Charlie Hughes and Dr Hines

CJ with Geniuses Dr. Hynes & Dr. Hughes (Missing Dr. Dieker)

The Future

What’s next? I am not sure if we will do more from home or when CJ will get to officially be with the avatars.

They are in the development phase for a younger, kindergarten version of Martin. I have been digging up old photos and videos again. We have been asked to consult again.

Details to follow.

TeachLivE Comes Home

TeachLivE Part 2

welcome-to-my-home-sweet-homeA while ago I wrote about how UCF has an amazing program called TeachLivE.  It is a computer generated classroom complete with avatar students to help train teachers without putting any human students at risk.  This incredible invention took a strange and amazing turn when a group of autistic students went for a visit.  http://autismmovesout.org/autism-teachlive-is-for-lovers/ CJ was lucky enough to be one of the students.  After our incredible experience, I thought that was the end of our story. It wasn’t.  TeachLivE was about to come home.  At least to MY HOME!

I am contacted by the TeachLivE people.  How would I feel about putting TeachLivE in my house?  Seriously?  Is it possible?  How soon can you do it? What do I need to do?  How much will this cost? Does my insurance cover it?

Turns out it is free…..but…there are lots of logistics.  I mean LOTS!  There is paperwork, funding and details of who is doing what, when and where.  We are going to part of a study or multiple studies.  I still not sure how many people or how many studies are involved even now.  They want to get some idea of how TeachLivE can impact people with special needs.  What changes can they make?  How much can it help?  Is it all positive or just too much?  OH….The Pressure!!!!

It is about to begin.  A wonderful young PhD student comes out to set everything up and show me what to do.  OK.  Ready for the truck.  How big is it?  Do we need movers?  My house is really not very big.  Do you need my TV or are you bringing your own screen?  I know computers are much smaller now. No mainframes.  No rooms full of equipment, but this is serious stuff.  She comes in with a small computer bag.  It is a laptop.  A laptop?  I am impressed and a little disappointed. I was actually worried about where on earth I would put it and keep it safe. 

So, we turn it on and the avatars pop up.  IN MY HOUSE!  It was a surreal experience.  I was a little overwhelmed.  We have entered a whole new world. I’m sure that Star Trek is somehow involved.  Maybe it is Star Wars with holograms.  Anyway, it is amazing.  It all took my breath away a little.  They will be taping everything.  I make them promise not to tape me!  I realize that as I am talking to the avatars, I start to feel self conscious about my appearance.  I’m not wearing much makeup.  I haven’t really done my hair.  What about my outfit?  Talk about suspension of reality.  I am actually worrying about what the avatars think about me.  I move everything so that they can’t see the pile of stuff I have stashed in the same room thinking no one will see it.  I didn’t count on the avatars coming in.  I feel the need to shut down the computer before changing or doing anything private. 

Day one—

I tell CJ that the avatars are coming.  I’m not sure how to explain it or how much detail to go into.  CJ loves the avatars, but how will he feel about them being in his home.  Will he like it?  Will he respond the same way?  Better?  Worse? Is he going to think that all his invitations to “come over to his house”, “play basketball” or even go out on a date, have finally been accepted.  My palms are sweating.  I was on edge.  This HAS to go well.  What happens if it doesn’t?  Will they just stop if he doesn’t cooperate?  My performance anxiety greater than almost any I have ever experienced.  It’s time.  I log on.  They are there.  I go to get CJ.  CJ refuses to go in.  He refuses to cooperate.  Great.  Now that everyone has gone to all this trouble and expense, he is not going to participate.  The great battle ensues and ends with him slamming the door in my face, yelling not so nice things at me.  He sits down at the computer, puts on the headphones and says, “Hi guys”. He then proceeds to have a conversation with the avatars and enjoys himself. 

Day Two—

The TeachLivE folks inform me that he is already research gold.  Me…..???  Gold?  You call THAT gold?  You should hang out around here more often when he is refusing to do things.  We could all get rich.  They actually want to see what he likes, dislikes and how much he is willing to cooperate…or not.  I am not to force anything.  We work out a system where he can “earn” something.  He gets to pick a “treat”, usually involving food if he cooperates. I now stock up on all possible rewards.  I NEED this to go well.  (after all, isn’t it really about me?)

Continues….Now, with food on the line, he’s motivated. He starts to get more excited on the days he is going to talk to them.  He starts deciding ahead of time what he may want to tell them.  He starts engaging with each and every avatar before leaving the room.  What???  He is usually trying to avoid conversations.  He is usually trying to engage with as few people as possible.  He will usually stick to one or two VERY safe people. Now he is the one engaging with them.   He starts to ask questions.  He remembers information from prior conversations and follows up with the specific avatar. 

He asks “Where are you going next year? Are you going to college?”  He asks about the one avatar’s grandmother that they had discussed in a prior conversation.  WHAT??!!?? CJ has always had the memory of an elephant, but only to harass you about something you forgot or your worst parenting moment.  He has never been one to ask about what is going on with you.  He has never been one to ask about your day, your weekend, your plans.  His new thing now is to ask everyone he sees, “How was your weekend?”.  The best part of this is that it can be any day of the week.  It is appropriate so people don’t react negatively and generally answer.  It is funny if it happens on the wrong day of the week, like a Friday.  He usually gets a slightly strange look, but he almost aways gets an answer.

All the sessions are being recorded, because the researchers can’t even begin to count or study all the things that are happening.  There are now 8-10 PhD candidates working with CJ for portions of their dissertations. 

I am thrilled. They are thrilled. Best of all, CJ is so happy.  I can’t believe all of this and the changes it is making in my son. 

More to come….Good thing UCF and TeachLivE have CJ.  Not sure they would be able to go forward without him.  One thing I know is that we don’t want them to!  They might think this is research gold, but for us and, especially for CJ, it’s priceless.

The Local Genius

keep-calm-genius-at-work-9 (1)What do they call it in the movies? Suspension of reality? Suspension       of belief? When you forget that it is not real and you are sucked into a     story and you believe if only for a short time that it is real?

We have officially entered an Alternate Reality. CJ is the local expert in   his field. He is the one you call if you have a project, if you need to         test an app or program, or just need to interview someone. We have       had several graduate students come out and interview him. Not me.       Him. We have TeachLivE using him for their development and him using them to improve his dating skills. We even have the local genius testing her new app on him.

A few months ago I got an email from a young woman working on a science fair project. She had been working with a PhD at UCF to develop some technology to use with persons with Autism to improve social skills. CJ had come up at TeachLivE and she had heard about him asking the avatar on a date. She wanted to know if it was OK to mention CJ in some upcoming interviews.

Me….sure mention away. It’s all on line. And in my blog. (I am sure she anxiously awaits the next entry.) 😉

I get another email from her asking to talk to me to ask some questions.

I talk to a delightful, poised, very intelligent young woman. She explains that she had met with a Ph.D. at UCF, Darin Hughes. She had worked with him on a game he was developing to improve social skills in persons with Autism. She was interested in getting CJ to try it. She wanted to have local TV video him playing the game for an interview. Absolutely. She does not go to CJ’s school. The school she goes to does have an ESE program and we know several of the students. I almost asked her why she didn’t just use someone at her school, but didn’t want to pass this up. She was obviously interested in his connection to TeachLivE.

So, she explains to me that the game had to be played on a computer. She rewrote the code in Java script so that it can run on iPads and iPhones. Me. ?? You what? Of course you did. That’s what I would do.

I knew she was smart, but seriously. We talk for a few minutes. I ask where she is going to school next year. I’m thinking Harvard, Yale, MIT…possibly UCF to continue her work with the technology. I’m sure Sheldon is there somewhere. Definitely Wolowitz for sure. She could be Penny, after all. (just much, much smarter)

She says….wait for it….she’s going to be at her high school again next year…she’s a …..FRESHMAN!! Me……………………………………………………………………………..

I’m not speechless often. I am this time. Soooo……….You really ARE the local genius.

So…now the UCF geniuses have a high school genius on their side.

So….the Local Genius contacts me a few weeks ago. She is doing the interview out at UCF with a UCF station and she wants CJ to come and see the app and see if he can play it. She wants to video him and possibly talk to him.

So…we troop out there over spring break. We meet a delightful, tiny, very poised genius. CJ always wants me to leave. I warn them and leave him in the room with the genius, her brother, who DOES go to Harvard and the reporters. Elizabeth and I go off in search of Wolowitz and Sheldon. I am SURE they are here. I wish I had taken photos of the labs around us.

Elizabeth and I end up talking to the professor who teaches the STEM class the local genius is doing her research through. I decide that Elizabeth and I are slackers. I also decide that I would have like science WAY more if I had known about all this.

CJ loved the app and learned it right away. The local genius shows it to me. It is brilliant. I can see so many opportunities here. I have said from the first time I saw TeachLivE work with CJ that there has to be someway to make an app. If I could just recode into Java script…..I say as we fade to a dream sequence.

They come out and the reporter asks if CJ or I would be interviewed. I told her CJ probably won’t but she can ask. Would I? Seriously? Try to shut me up. I look down…..well….at least I’m wearing a clean t-shirt today.

I go to answer a couple of questions. They wire me up. They start with a question about TeachLivE and CJ. I stop them right there. I explain that I will start talking, but they will have to edit it as it is not an easy answer. I talk for WAY too long. They ask a few other questions. I have thought about all of this A LOT!

What are the possibilities here? What if there was an affordable app that people anywhere could download to use wherever, whenever they wanted? What if this helped even a little? What if therapists and teachers could use it?

There is no way to explain to people the level of desperation families feel when they get a diagnosis. There is no way to explain the feeling of inadequacy you feel when you keep thinking what if I did one more therapy? What if I did a different therapy? What if I did one thing different and that made the difference? There are stories out there about how a family dropped everything and enlisted leagues of volunteers and armies of therapist and “cured” their child of autism. What if I could have done that? What if you could do that? What would it take? I know people who went as far as having invasive procedures done. People are desperate.

What if an app could help? What if an app could make a difference?

We leave and other than my disappointment in not meeting Sheldon , I am thrilled. I hope to continue with the genius. She’s adorable and brilliant. CJ liked her, too. You can tell, because he couldn’t look at her.

I get an email that the interview aired. I have permission from the genius’ father to post it. I even have permission to use her name. Her name is Sapna….personally, I like the Local Genius, though. By the way….I talk WAY TOO long! (as usual)

 

 

No Tight Pants!

red puzzle pieceWhen you live with someone who has autism, you spend your days living side by side lives in two parallel universes.  In CJ’s universe, I think the sky is green and all the clothes are loose and baggy and chicken nuggets grow on trees.  My family is aware of this of this sort of disconnect because we live with it every day.  But once a year, the world gets a reminder too.

Last week was Autism Awareness Day.  Each year, everyone is supposed to wear blue to show support.  Each year, I forget.   Some years I don’t even own a blue shirt.  I don’t have anything with the “Autism Speaks” puzzle pieces on it either.  CJ’s color is green.  My color is red.   Period.  Autism…well, autism gets my support every day of the year already.  I have the bumper sticker.   I think I have an attitude as well.

It’s baseball season at CJ’s school, and the team and coaches wanted to recognize Autism Awareness Day.  Could CJ throw out the first pitch of the game?

Sure.  Absolutely.  As long as he isn’t actually involved in the game.  I made myself clear.  There could be no repeat of the once-in-a-lifetime football experience.  Meaning NO tight pants!   Basically, if it’s not loose enough to hide a baseball in it, CJ won’t be wearing it.

Autism spoke at my house that day.

The day of the game, I dug through my drawers and found a school shirt that just happened to be blue.  No puzzle pieces though.  I put on my Autism ribbon pin and some sandals and off we went to the game.

When we got there, we found the school selling original design T-shirts.  Of course, they say HAWKS, because that’s the school’s mascot.  No brainer.  But the lettering for the word is made out of puzzle pieces.  In all the colors of the rainbow.  With an Autism Awareness ribbon behind.

I stood there blinking, because that was some seriously fine design work for just another ball game.

Then CJ walked up to me, sporting the shirt with a big thumbs up and a “gotta love it” grin.

CJ Gives a Big Thumbs Up

 

 

 

 

 

 

 

 

 

 

And then he turned around.

Number One

 

 

 

 

 

 

 

 

 

 

Not only is CJ throwing out the ball…he’s on the team!  And the whole team is wearing these awesome shirts with their numbers on the back, ready to play the game.  And CJ is Number One.

I got to my seat in the bleachers and looked down.

LH Puzzle PIece

 

 

 

 

 

 

 

Right smack in the middle of the field.  Lake Howell on a puzzle piece!

And the icing on the cake?  The cherry on top?

The team had invited the Challenger players out onto the field.  They walked out onto the field and their names were called out over the loud speaker.  We were already buzzed with excitement just watching this moment in the sun.  Then CJ threw out the first pitch, and not a bad throw either.

And then…the team presented me with a check for Challenger.

If I haven’t said it before, or said it lately, I love this school.  The level of thoughtful kindness, creativity and support both the staff and the kids have shown to all the special needs kids in their sphere has been overwhelming and has been a gift of real joy for so many people.  At this school, we win whether or not the kids win or lose the game.  They are learning every day that there is more to life than winning at sports.  They are growing hearts and minds for a lifetime.

Big Hearts and Baseball

 

 

 

 

 

 

 

Amazing.

Crazy Cool

Keep Calm & Go CrazyNo Ordinary Day

It’s been way too long since I’ve posted, but one thing I’m slowly learning is that you can’t be living life and documenting it at the same time.  Doesn’t stop me from taking pictures everywhere I go though.

The last few weeks have been…well…insane.

I woke up on September 18, a perfectly ordinary morning where the usual insanity I like to call our family routine unfolded just like it does every day.  And like every other day, I assumed that our insanity was contained within the walls of our house.  Our lives might be nutty, but everyone else out there was at least approaching normal…whatever that was.

CJ was invited, as always, to the high school football team meal that evening.  As you know, CJ is a enthusiastic fan and sideline cheerer for his team. He’s basically an honorary member of the team and he never misses a chance to be part of  the activities around a game he will never get to really play.

I went to say “Hi!” to the coach. He was nice as always. Very calm.  Very sane.

He said that he wanted to talk to me about something.

He told me he wanted to put CJ in a game.

 

keep-calm-and-are-you-kidding-meThe Cliffs of Insanity

“Are you insane??”  I said.  Actually, thankfully, I was too stunned to be that rude, but I admit I thought it loudly in my head.  So I just stared at him.

He asked what I thought.

“A real game?” I asked.  “Like, with people in the stands and cheerleaders and bright lights and a band?”

When he nodded, I stopped staring and I told him I thought it was a bad idea.   Really bad.  I tried to explain that CJ couldn’t run plays, he couldn’t follow directions.  He just…couldn’t.  No way.  He would ruin the game.

As the nightmare unfolded in my head, the coach explained that he had an idea.  He would put him in the game and he could take a knee.  If the team handed the ball to CJ and he took a knee, the play would be over.

Now, I am all about including the “special” kids in anyway possible.  I have always pushed for CJ to be included where he could be.  “Mainstreaming.”  “Least restrictive environment”.  The big buzz words.  As a IEP totin’ warrior mom of a son with autism, I’ve always pounded on the doors to get him into the widest world possible.  He loves typical kids. He eats in the cafeteria, goes to the classes he can, and he gets along well with just about everyone.

However…and I have walked a fine line on this…I have never wanted CJ’s needs or behavior to prevent other kids from learning.  I have never wanted him to be in a position where he might disrupt a class. And I never in a million years would have considered putting CJ in the middle of a football game where it would negatively affect the other kids or the score.

Apparently, I lack imagination.

Actually, looking back at the last few weeks now, I realize it kind of got beaten out of me over the years.  When CJ was born, he was BIG.  Nine pounds plus, with huge hands.  The doctor joked that we should just put a football in his hands right then, because that clearly was going to be his destiny.  His first toy was a stuffed football.  While other babies watched Sesame Street, he watched football.  He could shoot 8 foot baskets by the time he was 3.  He could spiral a football by the time he was 4.

And then CJ was diagnosed, and bit by bit, our dreams fell away.  Our world became a one of “can’t” and “won’t.”  He couldn’t do this. He would never do that.  And again and again, we were right.

So…you move on. We made a new world and a new normal, even if it didn’t look like anyone else’s.  Football didn’t go away entirely.  Through the Challenger League, CJ was finally able to play.  He played with his peers.  He had a great time. We had found his place.  But that place was on the sidelines for high school football games.

He’s is a great motivator.  I love it.  He loves it.  He is not, however, one of those special needs kids that could be put in a game like those great videos you see on YouTube.  No way, no how.

So when the coach asked what I thought, I told him the truth.  He was insane.

Insane people never believe they’re insane, so he ignored me and got me walking toward the office where all the necessary paperwork was.  Paperwork.  We were going to document this insanity with a sports physical and other details that your typical high school football player has.
There would be a practice.  There would be a jersey.  There would be a helmet.  And there would be football pants…tight fitting, snug football pants.

And then suddenly, I knew:  if CJ would let the coach stuff his hypersensitive, sensory issues self into all that gear, that would mean CJ wanted this more than just about anything he’s ever wanted in his life.  This was the chance of a lifetime, if CJ wanted to take it.

Who was I, with my bag of crushed dreams, to say no?

 

keep-calm-and-wear-a-helmet-3Number 89

When the time came, the assistant from his classroom started with the helmet.  CJ told me it was too big for his head.  I’m not sure if that meant it was heavy, tight or he just plain didn’t like it.  I can’t imagine that there is anything comfortable about a football helmet, regardless of your issues.  But he had to wear it for practice.

I asked him if he wanted to play.  Yes.  No hesitation.  Yes.  He wore the helmet.

CJ football gear

 

 

Next time, he put on pads. Hated it.  They hurt his back, he said.   “You want to play?”  “Yes.”  “Then wear the pads.”  He did.

A few days before the game, he put on the pants.  That poor coach stuffing 220 lbs of resisting CJ in those pants!  THAT I would have paid to see, but I was banned from the locker room.

They gave him a number:  89.

 

 

I got a video of him throwing a pass in full gear. That moment was so fabulous, I teared up.

In that moment, I saw CJ looking and acting like the typical kid he would have been before autism came to stay.  Someone was handing me back a small piece of my dreams while making CJ’s dreams come true.

It was really going to happen. I started telling people. People wanted to come. People sincerely, really wanted to come.  “Come! Come!” I said.  It was going to be CJ’s night.  I was overwhelmed with how many people wanted to be there.  Then someone said that we should let the local paper know. That the school should get credit for this.  I realized they were right.  Every time a moment like this gets out, it gives the parents of a special needs child a glimpse of possibilities.

So I sent a discreet note to the paper, letting them know of the remarkable thing this school was doing.  Maybe nothing would come of it, but I had to try.  I got a response immediately. They had already called the coach.  They wanted to come out and interview CJ and some of the players!

Interview CJ.  Hah!  Now the rest of the world was apparently insane too.

 

keep-calm-and-interview-on-2Crazy World

The paper came out and took some video. They ran the story the morning of the game.  People started calling me to let me know CJ was in the paper, which I found hilarious and touching.

Fox News had done a story a while back about CJ’s relationship with Blake Bortles or “#9” as CJ calls him.  The reporter on that story had asked me to stay in touch, so I dropped a line to let her know what was going on.

Next thing I know, Fox News wants to come to our house before the game.

To interview CJ.

They are going to be there during the game to film CJ for the night’s news.

Oh, and also, they want to know if I would bring CJ to their studio the morning after the game.

For an interview.

I said yes to all and made an appointment with my doctor for a sanity check.

Fox News came to our house.  CJ wouldn’t come out of his room.  But he did decide to let the reporter and camera man in.  I, and my astonishment, had to stay out.  So I stood outside holding my breath.  And he did OK!   He “yes ma’am”d her and answered a few questions.  It was fine.  It was perfect.

This was his second TV interview.  Apparently, he’s a pro now.

Then they wanted to talk to me.  We went outside.  I gave them my best “it’s all great…dreams do come true” speech, sincerely meant, but with one ear out for my two suspiciously perfect children inside.  Sure enough.  Within minutes, there were screams from in the house. I went in to find the kids fighting.  It’s no small thing when a 220 lb 18-year old gets mad at his 80 lb sister and we take it very seriously.  Great.  I separated them and went out to finish the interview, feeling like a fool.

 

keep-calm-and-get-prepared-22Bright Lights, Big Crazy

Afterwards,  I took CJ with me to the school early to get dressed for the game (the pants, oh the pants!). I pulled up behind the Fox News truck, which was surreal.

 

Then the AD and assistant AD arrive and I see this:

Fan Club!

 

 

 

CJ’s favorite bright green and his number.  The game hasn’t even started and I’m already crying.

 

 

 

I wandered into the stadium to find NBC, CBS and the Orlando Sentinel there.  The reporters were already talking to CJ and the assistant coach, filming him getting his pads and helmet on. Good God, he IS a pro!

I could see our friends starting to arrive. I saw people who hate football.  I saw whole families with special needs kids that would normally not be there, sitting together. I saw people from church.  In fact, our church sent a whole cheering section.  There were people there whose kids go to rival schools.

CJ and Karina

 

 

Then the students showed up. The kids had made signs. Tons of signs, all with green letters with CJ #89.  Keep in mind, the school colors are blue and silver. There was no green involved with either team here.

A kid I didn’t know walked by with “CJ” painted on his chest.  I could hardly see for the tears.

 

 

 

 

forget-calm-and-freak-out-4The Impossible Dream

We were 0-5 at this point in the season and it had rained every game this year. Rain as in cancel the halftime show rain. But not tonight. Tonight, there was a breeze for the first time in months and not even a hint of rain.  Nothing was going to ruin this moment.

CJ was supposed to go in after the clock ran out at halftime.  The other team knew this. At the end of the second quarter, the clock was running down. The student section started chanting for CJ. The moment was here.  They put him in.  As he ran onto the field, the students started chanting “We love CJ!”  Louder and louder.   The football players were all at the sideline cheering.  And then announcer said his name.

He went up to the line as the quarterback.  When he was handed the ball, CJ skipped almost the whole 5 yards to the goal line while my husband cracked up about his “lightning speed”.  My son, who was wearing an uncomfortable uniform and helmet, surrounded by roaring crowds and bright lights, was practically walking on air.   My daughter, who was fighting him two hours prior, was standing with tears streaming down her face.   Looking around, there wasn’t a dry eye in the stands.

 

At the end of the game, CJ went back in for the last play. He took a knee on the clock.  And we won. We won for the first time this year!

At the end of the game, everyone was singing the alma mater.  The players were chanting “Go CJ” over and over.  And CJ was whooping it up.  Smiling bigger than he ever has.  Pumping his helmet in the air.  Throwing his arms around the players.  The boy who doesn’t like to be touched and hates looking into cameras wouldn’t stop hugging people.

 

 

 

He had his arms around the players and coaches. He smiled at the cameras. I got a photo of him with his sister.  And I got a family photo of us all on the field! It might be the only candid family photo ever for us.

 

 

 

 

And just when I thought there was nothing left that could make the night any more spectacular, the coach called the players over.  He told them he was breaking with tradition that night and giving away the game football to CJ.  CJ, who was voted the Most Valuable Player.

 

Fifteen minutes after the game, he was still taking photos.  Everyone wanted a photo with him up to and including the entire group of cheerleaders.

Suddenly, CJ was gone and I went looking.  I found him in the locker room, desperately trying to get out of the uniform.  The pants were the biggest problem.  The poor coach had to help one last time.

 

191652Last Stop on the Crazy Train

We rolled home, exhausted and exhilarated by the wonderful insanity of that night.  I couldn’t even begin to express my gratitude to CJ’s coach and everyone else who came together to give CJ his dream, but I vowed I would do so tomorrow morning, after we’d all slept 12 hours.

Except we had to get up early the next morning for a live interview on Fox Morning News.  Halfway there, I realized in the rush, we’d forgotten to give CJ his meds.  This is usually a recipe for social disaster, but we were already running late. We had to risk it or not go at all.

He's a pro!

 

 

CJ brought the game ball with him and did great.  Without meds.

 

 

 

 

Meanwhile, Twitter blew up.  The kids were all tweeting #TeamCJ and #CjsStory.  For several hours #CjsStory was trending on Twitter nationally.  It was a whole new kind of crazy. Photos were being posted everywhere. @ellen and @sportscenter were tweeted.  Papers in San Francisco, LA, Chicago and New York ran the story.

I took a nap.

It is quieting down, but it was a wild ride.  Ellen hasn’t called.  Sports Center hasn’t either.  I figure they can probably smell the insanity.

It doesn’t matter.  Nothing matters except that CJ played real football.  CJ played for every kid who didn’t make the team. CJ played for every special needs kid out there.  CJ played for his parents, his sister, his church, his friends.  And CJ played for himself.

I think this pretty much sums it up.

 

My bag full of broken dreams is lighter today.

TeachLivE is for Lovers

TeachLivE green chairWorlds Apart

Picture yourself, a humble, sincere, vaguely panic stricken education student just about to step in front of a class room full of middle school students for the very first time. You have the best that a college education can give you and a handful of memories of your own school experiences (which probably doesn’t help) and an evaluator watching in the wings.

Extra strength antiperspirant, anyone?

Now imagine yourself seated in in that same class room, surrounded by young people your own age. They’re laughing and talking and coughing and moving in their seats, tapping toes and rummaging through backpacks while cell phones ring and the air conditioner hums and clatters in the background as the fluorescent lights overhead put out a high pitched buzz. The sound of heels clicks on the floor outside the door as people walk by, chattering. Someone is writing with a squeaky erase marker on the dry board on the wall while the person closest to you slurps from the bottom of their foam cup through a straw. A chair scrapes across the floor as someone stands up and the chains on his jacket jingle when he does. Behind you, someone pulls open a crackly snack bag and the smell of Doritos rises into the air. Every scent and sound is equally strong. Each one demands your attention. Nothing gets filtered out.

Then someone jostles you, squeezing by and calls your name. You look up at their face. It fractures slightly into a thousand pieces, each shifting slightly differently as the mouth and eyes and jaw bone move. The confusion is overwhelming. You can barely process what they’re actually saying, looking at that bizarre spectacle. You look away instantly, anywhere else but at that face, but the painful sensation of that glance stays with you, and you start to rock back and forth to help push the feeling away. It doesn’t help much.

And now, it’s time to be social and learn!

 

TeachLivE - GeniusWorld Building

An Educator and an Engineer walk into a bar….

Stop laughing. It could happen.

In fact, at the University of Central Florida, it did.

 

UCF Engineering Smart Guy: Why not give these brand new teachers a chance to get up in front of some computer generated students first? You know, test it out with software students…control the environment.

UCF Educator Brilliant Person: Uh. If we’re controlling the environment for them, how does that train them to control the classroom themselves? Where’s the random? Where’s the real life?

UCF Engineering Smart Guy (beginning to sweat with excitement): So, it needs to be real! And digital! Really really digitally real!

UCF Educator Brilliant Person: Uh…have you seen “Avatar?”

>Phone rings<

Speakerphone:  “Hello? This is Bill and Melinda Gates. We felt the earth move here in Redmond, WA, and we have a grant for you.”

 

TeachLive logo classAnd thus was born “TeachLivE, at least in my fevered imagination. A research team at UCF has created a virtual classroom peopled by avatars. (An avatar is a computer version of a real person. The viewer sees the computer version on a screen while the real person controls the avatar behind the scene. And no, they’re not blue.)

So now, before throwing a tender young teacher to the wolves who are our darling middle school offspring, the teacher can enter a sort of educational flight simulator full of desks and digital students, just as if standing at the head of a classroom. Every one of those avatar students is “alive” in that a real person’s body motions and speech are being reflected in real time on the screen. Each avatar has a name, personality and a back story. And they react based on the teacher’s actions.

virtual classroomOf course, the avatar isn’t really a student.  It’s controlled by a trained interactor, and it’s a highly controlled environment: a student teacher’s lesson plan has to be submitted in advance. This results in intense immersion experiences for the teachers. In fact, it’s so intense, no student teacher is allowed to be in the virtual classroom for more than 10 minutes. I’m not entirely clear on what happens if they go over 10 minutes but it may account for the slight burnt smell I noticed hanging over the lab.

TeachLivE is now being used all over the country to train new and experienced teachers. Go to Youtube. You’ll see.

 

4248898_origWorlds Collide

A Teacher and a Teen with Autism walk into a virtual classroom….

CJ’s teacher has been hard at work on her master’s degree at UCF. This means she’s smart, and she knows people. She and one of the TeachLivE creators (Educators and Engineers again, though I don’t know if it was in a bar) got the idea to bring her special needs class into the virtual classroom…you know…just to see how they would react to the avatars. Some of her kids are more social and attend mainstream classes. Some fall in the middle. And one was completely non-verbal. But no matter where on the line, all her students struggle to engage or show social interest. So we already know how they react to people.

Except that these “people” aren’t really people. And these kids aren’t just any kids. The Engineer and the Educator wondered what would happen.

The result was a show stopper. Each student entered and one by one took a glance at the screen, stopped, focused and LOOKED. Heads up, shoulders back, eyes front, gaze steady. And one by one, the educators in the room came to a halt, spellbound. The room fell silent. Except for the kids…who started talking.

Every single one of the kids engaged unprompted with the avatars. They took turns. They initiated. They asked questions. They waited for answers. And then they answered back. It may not have been linear conversation as you and I know it, but it was a sustained back and forth that made rough sense, and most of all, the kids were interested in the interaction.

The non-verbal student typed on his iPad that he wanted to talk to one of the avatars, and he asked for the specific avatar by name. He had only seen that name on a seating chart on the screen because no one had spoken to that avatar yet, but he was interested enough to pick him out and ask for him. And CJ made sustained eye contact and engaged in continued conversation with the avatars for over 8 minutes. EIGHT MINUTES. Fifteen years of therapy had gotten us to a bearable sixty seconds. Ten minutes in this virtual world and we were light years away from anywhere we’d ever been before.

He didn’t want to leave. Nobody did.  But they had suddenly found themselves in the middle of a completely unanticipated new experiment, and then someone managed to remember the 10 minute rule. By the time the kids were escorted out, everyone who worked in the lab was elated and in tears. And dumbfounded.

No one expected this.

A moment of sustained eye contact may not seem remarkable to most, but to the parent of a child with autism, it’s one of several Holy Grails. Having a conversation of more than two or three sentences that isn’t essentially forced upon your child out of necessity is something many of us gave up hoping for or expecting a decade ago. And your child suddenly finding the human race anything more than a mine field to be picked through….

Needless to say, it’s been a game changer.

First of all…why? Why is it different for these kids interacting with digital people instead of flesh and blood? What is there about the avatars that eases the fractured process of looking people in the eye? Are there subtle social cues or facial movements that are missing from the avatars that make it easier for a person with autism to process their visual information?

Now….what to do with it? There are a thousand questions now that weren’t there before. An entirely new path of research has suddenly opened.

CJ’s teacher is now a Ph.D. candidate at UCF and she works in the lab. The combination of TeachLive and Autism applied is now the focus of her dissertation. She is using CJ as a subject. He has been in the lab 3 times now, and he’s even talked to the avatars over the internet using FaceTime. He loves these sessions. He loves the avatars. He does not want to leave. He gets jealous when he realizes someone else is talking to them and he is not in there.

CJ talks with Maria in the TeachLivE lab

CJ talks with Maria in the TeachLivE lab

He is developing relationships with the avatars that are sustained from session to session. He even has a favorite. Maria. Ah, Maria. Maria is quiet. She is very smart, but she doesn’t offer answers. She never volunteers for anything. Interestingly, most student teachers never speak to Maria when they run the classroom. She’s the typical quiet student that would get overlooked in a busy classroom. CJ specifically asks to speak to her.

In his last session, he offered Maria information, he asked her questions, and talked about previous conversations.

And then he asked her out on a date.

!!!

Why is this happening? We have no idea yet. Personally, I can only think that it is safer. It has always been obvious that there is so much more going on in his head than he can get out. For some reason, when he’s with the avatars, he feels either safe enough or physically comfortable enough to try out some interactions.

Temple Grandin said that a person with autism finds it actually painful to look at someone’s face. The only thing that I can think is that the clues I get while engaging with someone…clues about their inference and emotions…are just too over whelming for someone with autism. Everything comes at him at once, and he can’t filter out what’s important and what’s not. I sometimes try to just imagine what that does to CJ.

That doesn’t appear to be happening in the TeachLive classroom.

 

dreamdinnerguest600x400-thumb-599xauto-284193Brave New World

And now…now things seem to be changing outside the lab as well. CJ is having more and more unprompted conversations. Real conversations with people. A couple of people have come up to me recently to tell me about an almost normal conversation that they had with him. These are people who know him and know what the difference is and know something’s different. They want to know what is going on.

I have no idea what to tell them.

After his last trip to TeachLivE, CJ invited a typical student (a girl!) to dinner at our house. Can I say that again?

CJ…invited…a girl…to dinner at our house.

It gets better. He was so insistent that she come that she and her family finally told me about it. I confirmed the invitation. And she came! He was so excited before she arrived, and he even sat at the table and (sort, of) engaged in conversation with her.

The only bad part of this is that now he wants to call her…ALL THE TIME! (I do NOT let him do that! You’re welcome!) Just pointing out that this is a problem I never, ever thought I’d have.

Willy Wonka dateHis 11 year old sister had some friends over on the last day of school. CJ called one of the boys over to the door of his room (no one is actually allowed IN his room, so standing in the doorway means it’s serious). He then proceeded to quiz the kid about his intentions toward his sister. HE was the one drawing an stymied 11 year old into conversation.

 

CJ: So. How’s school going? How’s school?

Boy: Uh…okay.

CJ: So, she’s funny. She’s really funny. My sister? She’s cute?

Boy: Uh…yeah?

By this point, I am standing in the hall, texting CJ’s teacher like a mad woman, trying and failing to get video of the moment.

CJ: So. How was your birthday? Did you have a good birthday?

Boy (whose birthday was months ago): Uh…okay…

CJ: So she’s funny? She’s funny? You think she’s funny? My sister, she’s cute?

Wretched Boy: Uh, yeah.

CJ: Ah HAH!

This is a first. As Elizabeth comes and releases her poor friend from this doorway insanity, I am shaking. I have never seen CJ actively engaging with someone else and being the one to draw the other out in conversation! It’s a complete role reversal, and I have no idea what it means.

What IS going on? I have no idea, but it sure looks good to me. Can I prove that TeachLivE has done this?   No.  I don’t work for UCF.  I’m not in any way affiliated with TeachLivE and I’m not an expert on any of this.  I’m just a parent with a point of view who happened to be there at Ground Zero for something nobody understands.  Not yet.  The research is only beginning but my husband and I are convinced.

It’s not hurting CJ’s love life either!