Archive for Happy To Be Here

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.

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.

Just One of the Boys

Man caveIt wasn’t long after CJ was born that I noticed something: Men…are different from women.

A little late, you say, given that I already had a kid?

No, no, no. Not THAT kind of different. It’s just that I’ve noticed that men have certain…well…qualities.

Most men don’t want to engage in long meaningful conversations.  They don’t want to look at each other any more than they have to to get the channel changed or another beer brought from the fridge. Men think that sitting on a couch facing the same way silently watching TV for hours is socializing. When they do get up and move around, men prefer to do something.  Build something, throw a ball, run, mow, fix, etc.  And most men prefer doing one thing at a time, completely, before moving on to the next thing. Multitasking is unpleasant and to be avoided.

I have seen men I love work side by side for an entire day and not know one darn thing more about each other’s lives at the end of the day than they did when they started that morning.

Me: Thanks for fixing the car. You guys did a great job.
Him: No problem!
Me: Hey, how are he and Karen doing with the new baby? That first week home from the hospital is always rough.
Him: …. They have a new baby?
Me: Yes…. You know…the one that was born two weeks ago after her mother died and he lost his job of 15 years?
Him: …. Oh. He didn’t say.

Does any of this sound kind of familiar? Maybe a little bit…autistic?

There. I said it. Really, I had to say it. Because it explains so much.

From the start, men have always been attracted to CJ.  No matter how much his autism was driving his behavior at any moment, men have rarely had a problem having him around.  Men usually think he’s funny even when he is acting crazy.  When he was a baby, big, tough men would stop me on the street or in stores and tell me how cute he was.  Seriously, one day a work van stopped right in the middle of my street when I was crossing with CJ. A tough-looking construction worker leaned out of his window and said, “That is one cute baby.”  Fifteen years later, I am still a little shocked.

Even now, it’s no different. Football, basketball, you name it. All the players love him. He’s the kid who gets the shout outs and the “Woot!” when he shows up on the field. It’s something about his energy, I think. Autism or no, he just radiates “BOY!” And men and boys, without comment, without full eye contact, without question…they see it, they know it, they honor it and the door to the man cave opens wide.

Over the years, there have been several boys in our lives who never seem to notice CJ’s autism, or if they do, they just don’t care. I guess if you discount lack of conversation, lack of eye contact, hyperfocus on one thing at a time while excluding everything else, side by side parallel activity and the need to raid the refrigerator every 30 minutes, for a boy there aren’t really any “issues” with CJ.

CJ has never really wanted to play with Legos or action figures.  But somehow these boys have gotten him to participate many times.  I am always confused when this happens. The boys have all been considerably younger than him, but I’ve realized that CJ is being patient with them while they are being patient with him. Everyone wins. They are having Man Moments.  Somehow, the Man Factor can trump autism every now and then.

We were at the beach with close family friends not long ago when one boy got CJ to build a sandcastle with him…for over an hour.  He directed CJ to go and get water and told him where to dump it.  They built and built and I kept watching, waiting, and thinking that CJ would have had enough any moment or want to leave five minutes later like he usually does.  But he was was fine and he kept on being fine, which meant we got to hang out and have a normal beach day. Later that night, looking out of the window of our condo, CJ was concerned to see someone digging on the beach.  He wanted to make sure they were not wrecking his “castle”.  I asked if he had had fun building it.  Instead of the usual “yeah” or “fine,” I got a big “YES!”

He wanted to keep talking about it, too. That day, CJ was just one of the boys.

Thanks Zachary!

Going “Digital”

WDTVSo…we went on vacation.  Not a 45-minute drive day trip where you eat at McDonalds in your wet bathing suit and come home with sand in your shorts.  No, a week’s real vacation at a condo at the beach (it’s Florida – we are predicable).

“Why not a hotel?” you say.  “Why not some time at one of the Orlando resorts?”

Oh no…it’s Condo or Bust for us.

My parents came with us.  My parents understand all about “The CJ Factor,” but they still wanted to come with us.  They either have some sort of desperate wish to be tortured or the patience of Job.  Or maybe it’s the same thing.

They shared a 3-bedroom condo with us.  For a week. AND…they watched the kids so we could go out. Let me repeat that:  they watched the kids so we could go out.   I once read somewhere that if you want to do something to help a family of a special needs child, offer to watch the child to give them a break.  They recommend that you really, really mean it, as the parents will be squealing out of the driveway before you finish your sentence.

The condo was beautiful.  It was newly refurbished and amazingly decorated.  However, I quickly discovered that amazingly decorated bed comforters will stain when smeared with Cheetos.  What was I thinking when I put that crackly bag in the cart??  I called my husband who was coming the next day and asked him to bring CJ’s comforter with him.  I made a mental note to bring a blanket or comforter with us the next time.  Not buying Cheetos is not an option.

Luckily, nothing was broken or ruined.  I had visions of our deposit disappearing.

And now I have to tell you about the most wonderful thing.  I mean amazing wonderful.  Like, iPad wonderful.  Anyone with kids, but especially anyone with a special needs child needs to know about this.  I think I mentioned in an earlier post that you don’t want to mess with an autistic person’s routine.  Routine and stability are the king and queen of the autistic lifestyle.  This is part of what made the iPad such a wonderful addition to a special needs kid’s daily world.  Movies, TV and photos on a portable device can provide an anchor of familiarity in stressful situations and they can let an autistic person instantly focus and escape into a favorite imaginary world in a sensory overload environment, like shopping at Walmart or eating at a restaurant. Of course, an iPad has a small hard drive and it will only hold a handful of videos.  And they can only be in one format.  It’s a constant struggle to keep it “fresh” enough to let you get through grocery shopping without incessant demands to leave.

Enter the Western Digital Live media server.  Its a little black box (4″ x 5″ x 1″) that will fit in your purse.  You plug it into your TV with one cable and you can plug an external hard drive full of movie files into it with a USB cable.  You control it with a remote control and an easy menu on your TV.  It will play just about any format video file you can throw at it.  You can play any movies, TV shows, music or photos files on any TV.  This means you can copy all your DVDs onto the computer and dump them on the WD hard drive.  No more scratched DVD’s taking up shelves of space, and literally hundreds of movies to watch at the click of a remote.

But it gets better.  The one we got can connect to the internet through your home network, and it has buttons for NetFlix, HULU and VUDU.  Wherever you go, with a wireless internet connection, Netflix and other services are available.  And if you drop a slim hard drive in the bag as well, hundreds of your own movies and TV show files as well, no internet required.

This means that you can TAKE YOUR CHILD’S “SHOWS” WITH YOU!!!!!  Even if you go away for a week, out of familiar territory and in an unpredictable new environment, your kid can withdraw and escape at a moment’s notice to a safe, familiar world to “reset” and recalibrate.

This has transformed my life.

CJ calls it his “digital.”  When we arrived at the condo, I set up his beloved “digital” before I even unpacked a flipflop or toothbrush.  He was so happy.  I was so happy.  We had few problems all week.  Yes, he spent too much time in his room watching TV, but hey!  It was vacation, and he is a teenager after all.

He did join us on the beach, reluctantly, on several occasions.  Good for him.  He did like the pool, but it was too cold to swim for long.  And always, after a session out in The World, he could retreat to time with his “digital,” without frustration or acting out while I’m trying to take a nap.

It ended up being a nice time.  I remembered once again why we use condos and was so grateful to my parents for all their help.

I didn’t squeal out of the driveway even once.

It’s a Gift

autism smiley-faceLast night, I was reminded of something I so often forget (or at least lately I do).  I was reminded how funny CJ is.  I was reminded how happy he can make the people around him.

We went to a graduation party for one of his friends.  This young man is “typical” and everyone there was “typical.”  Yet most of the people there knew CJ, or at least knew of him.  They were all very nice and as I watched, I realized they were genuinely happy to meet him.

He was not crazy about the more crowded area towards the back of the house where everyone was congregating.  So he positioned himself at the front window.  He would look out between the blinds and then, as people walked up to the door, he would jump up to greet them.  “Come on in!” he would say over and over.  “Come on in!”  Every single person walked in with a smile on their face.  Someone commented on it to me.  She was smiling…thought it was great…and all of a sudden, I had a flash of something that happens every time we go out of the house.

Think Walmart or Sam’s Club.  Now, think Walmart or Sam’s Club on a Saturday.  Uh huh.  Exactly.  Most people coming out of either place on a Saturday are not happy about it.  They don’t want to be there.  People sort of trudge out of the store looking grim, looking harassed, looking down frowning or hurrying straight ahead, trying to get to the car before their toddler goes head first out of the cart.  One friend I have says she hits Walmart like a surgical strike, with a goal to beat her last best time getting in and getting out.  Everyone knows that you only go to Sam’s or Walmart or any big store on a Saturday if you have no other choice.

And then here comes CJ.  We will walk into Sam’s or Walmart on any given Saturday.  As we walk in, CJ always greets each person he sees…every one of them.  “You have a great day!”  “See you!”  “You have a great day!”  He has a huge smile, and will at these moments often look directly at people.  Remember, he’s nearly 18 and he’s six feet tall now.  People’s are usually startled for a moment, but then their reactions are almost always positive.  When they see him smiling and talking to them, they can’t help but smile back.

And he had everyone at the party last night smiling.  The other mother and I were remarking that a kid being cute is often the thing that keeps a parent from reacting in an “inappropriate” manner.  I have a vivid memory of him at a young age.  I don’t remember why, but I was so mad at him.  I was speaking in a loud tone of voice (insert “screaming in frustration” here).  He just looked at me and then he grinned that huge grin of his.  I couldn’t help it.  I started laughing and then so did he.  And once CJ laughs –  everyone laughs.  You just can’t help it.  I finally looked at him, and in between cracking up with laughter I said, “You are still in trouble!”

Well, sort of….