Archive for Kathleen Williams

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.

Sweet Summer Time?

The-summer-2015-is-coming

Sweet Summertime

Summertime.  After the busy school year, you just dream of sleeping in.  Lazy days.  Trips to the beach.  We have Sea World and Aquatica (Sea World’s Water Park) passes.  They have special summer concerts and night time shows.  It is really fun to go at night when everyone is leaving.  We don’t have a pool, but lots of our friends do.  I even dream of just binge watching some TV. 

Elizabeth

What does it look like for my daughter?  Sleepovers until I say no.  Party after party.  BBQ’s.  Camps.  Volunteering at church for VBS.  She is gone more than she is home.  My job is being a taxi service as much as she can talk me into it.  Her summer is like the summers you can only imagine. The only way her summer could get any better is if we actually lived at the beach or had a pool.

CJ

What does it look like for CJ?  No Sea World.  He hates crowds and will get so over whelmed that he will melt down and take you down with him.  He doesn’t do sleepovers.  He certainly doesn’t want to sleep at your house unless he is out of town and has no option.  He definitely does NOT want you to sleep at his and absolutely positively NOT in HIS room.  We call it “The Forbidden Zone”.

People with autism just don’t have regular “friendships” like my daughter does.  They might like each other and even tolerate doing things together, but they do not “spend time together” the same way.  A friend recently said that it makes her sad that her son has no friends to spend time with.  At graduation this year, all the kids were so excited and so happy CJ had come to see them.  They were taking photos with him and signing yearbooks.  They stood in front of him and invited each other to come over for open houses and parties that night or that weekend.  They are great kids.  Not one invited CJ to so much as stop by.  Were they horrible people?  No.  Were they trying to exclude him?  No.  It just never occurs to anyone to include him with their other friends.  I don’t think he notices, but I do.  Every time it starts to look “normal” or as normal as we can get, then it doesn’t.

One of the highlights for CJ this summer was volunteering at VBS.  I had told them if they could come up with something for him to do, I would volunteer as my daughter was volunteering.  No pressure.  It was fine with me either way.  I made that clear.  I got a phone call days before it started with an apology that he hadn’t gotten back to me sooner.  Me….not a problem.  I had told him no pressure.  Then the shock….they had a job for him.  Me…???????!!!????  What is he going to do?  Security.  Me……..  Security?  He will be helping the guy doing security.  They will walk around and make sure no kids are escaping, get bandages if needed and just be a presence.  No mention of my job.  I don’t even care.  I’ll do anything.  CJ has a job.  I do make it very clear that if for any reason it doesn’t work, we can stop at any time.  If the security guy just doesn’t want him to do it, let me know.  No hard feelings.  We go to the volunteer meeting. They hand out shirts and jobs.  My name is never called.  I ask.  I have not been assigned a job.  No problem.  I’ll show up and pitch in where needed.  This way I can take CJ and leave if things go down hill.  We are there no more than 15 minutes the first day when both my children ask me to leave.  I make sure everyone has my number just in case.  The other moms look at me like I’m crazy for sticking around and tell me to run for it!  I do.  I get my house clean, run errands, meet a friend for breakfast and even get my hair cut.  What a gift!  CJ loves it.  LOVES IT!  He tells everyone he talks to that he has a job.  A job?  He is “working security”.  Everyone has the same confused reaction.  Security?  Yes.  At VBS at his church.  I got more calls than I can remember in a long time.  CJ said he has a job working security at VBS?  Me…yes he does.  He is still talking about doing it again even if he has to wait until next summer.  Did I mention before that I LOVE MY CHURCH!

Probably the biggest highlight of the summer for CJ is CAMP!  It is a sleepover camp.  The first time he went I was a wreck.  Not too much of a wreck to take off for the beach, but still nervous.  He is so excited that he keeps asking me insane questions over and over.  When does he leave?  What cabin is he sleeping in?  How would I know?  We talk about all the activities.  What are his favorite things to do?  Swim.  Games.  Seeing friends.  He can’t wait to see “his girl”.  Who is “your girl”?  He doesn’t know yet.  He will have to see who is there.  I asked about this.  They told me that each time he goes to camp he picks a girl and then stalks her all weekend.  She is usually a typical buddy.  They always tell her that he is harmless and he doesn’t come within 10 yards of her, so no big concern.  Days ahead of time, he wants to pack.  OK.  Get your bag and bring me some clothes.  He brings his duffle bag he uses for camp filled with every pair of underwear in his drawer and a bathing suit.  Well….  You might just need a few more things.  He goes and has a great time! 

He does two more camps this summer.  Both are day camps.  One is Camp Shriver.  It is part of Special Olympics.  It is FREE!  Did you read that right?  FREE!  They use a local high school where they have use of the gym and pool.  He swims every day and loves every second of it.  He comes home and tells me about who he saw and who he likes.  He also tells me about who he hopes won’t be there or won’t be in his group the next week.  Some things are just the same for typical and special needs kids.  There are just some people we like more than others.

How do we get here?

You know how you plan your summer and summer vacations?  You figure out a budget, pick locations, find rentals or hotels, decide on camps and other activities.  If you are my daughter, the biggest obstacles are time and money.  If we had the money, she would be at camps one more awesome than the next until it was time for school to start.  She would have nothing but parties and fun with friends.

If you have a special needs child, it looks very different.  First, you have to find possibilities.  What camps are even available?  Day camps or sleep over camps?  What are the costs?  Where do you want to go on vacation?  What options are there for rentals?  What can your child tolerate?

When considering a camp, first you have to find out if they will take your child.  I have been extensively interviewed.  Some camps require a face to face visit before accepting your child.  The child is the other problem  After the age of 22, most camps won’t take them.  The problem here is that unlike most 22 year olds, they still can’t stay alone.  Can your child sleep away from home?  Will the camp provide the needed supervision?  Will the camp give your child medication?  Will your child be kicked out? 

How do you get information?  Like anything with special needs kids, it is mostly from other parents.  People post on Facebook, email, call and even text.  There are web sites and suggestions from schools.  We are talking desperate here.  I saw one post that said “Does anyone know of a sleep away camp that won’t throw my son out?”.  She was serious.  One mom posted to pray that her son made it through the week this time.  I talked to parents who had been thrown out of camps before the summer was half over.  I ran into a mom about half way through the summer who has three boys with autism.  Yes, you read that right.  Three.  She was asking, like we all do, what we were doing this summer.  The question is not just polite courtesy like it would be with my daughter.  It was quiet desperation as she explained they weren’t eligible for one camp and she had heard of one that we were going to and that she HAD to find something else to get through the rest of the summer.

I have been talking to friends all summer whose kids are making them nuts.  Their kids are fighting.  Their kids are bored.  I understand.  I really do.  I also can give you a list of parents who would kill for those complaints.

The future

What happens now?  What does the future hold?  As our children turn 22 and “age out” of schools and programs, what happens to them?  What happens to our other kids?  What happens to our families?  Right now, I don’t know.  I have hopes and dreams like everyone else.  There are more options every year.  A summer job would be great.  As he gets older, I would love for him to get some job experience.  I would love for some different camp type options.  When typical kids get older, they often work at the same camps they went to as kids.  They have started having some of the special needs kids volunteer at the camp CJ attends overnight.  If he could work at a camp for even a few weeks, it would be great.  I do know one thing.  As the population of people with special needs over the age of 22 increases, the need for something for them to do increases exponentially.  CJ for one WANTS a job.  After all, he does have experience working security. 

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.