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Crazy Cool

October 14, 2014 / Kathleen Williams / One comment

No 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.

The 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?

Number 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.

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.

Crazy 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.

Bright 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:

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.

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.

The 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.

Last 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.

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.

Category: Amazed & Awed /

TeachLivE is for Lovers

July 8, 2014 / Kathleen Williams / One comment

Worlds 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!

World 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.”

And 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.

Of 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.

Worlds 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

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.

Brave 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.

His 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!

Category: Amazed & Awed, Dazed & Confused /

Number 9

May 14, 2014 / Kathleen Williams / 29 comments

Blake Bortles and Oviedo Challenger buddy CJ Williams

Any little boy who has thrown a football around the yard dreams of playing in the NFL. Heck, half the middle aged men in America sitting on their sofas working on their love handles during “the game” are still secretly dreaming about it.

The NFL. The pinnacle. The elite. The very top of a very long, very steep, very hard to climb ladder. It’s years of hard work, sweat, endless practices, study, physical exhaustion, pain, self denial and a personal inner drive that almost defies description. It’s the place where the best are separated from the merely very, very good. It’s the end of the line for a lot of dreamers.

Last week was the NFL draft. Last week, hundreds of hopeful college players sat by their phones, waiting for the call. And last week, for a handful of special young men, that dream came true.

One of them is VERY special to us.

Those of you patient enough to have followed my bloggish ramblings over the past year may remember that CJ is an enthusiastic member of Challenger football. Challenger is a football program that lets children with disabilities actually play the sports they love to watch and dream of. Challenger pairs these children with a volunteer “buddy” from a high school varsity team. Right from the start, there were some amazing young high school football players that came out to buddy with the kids.

One was a local Oviedo high school quarterback. He and CJ took to each other right away. Aside from partnering with CJ at the Challenger games, he would come by just to hang out and shoot hoops or to sit in CJ’s room with him and watch old football games. And I do mean old. As in, games from the 1990’s. Games from when before CJ was born.

CJ doesn’t watch the same football as the rest of us, and he doesn’t watch it the same way either. You see, CJ has memorized the old games…play by play. And when a big play comes along, CJ pauses and fast forwards through it…and then turns to tell you what happened. In the more than half a decade CJ’s buddy has been visiting him, I don’t think he’s seen one significant play on our TV. And he’s never once questioned it, redirected CJ, or lost patience with our grainy, flickering well-worn VHS tapes of forgettable football with all the good stuff “edited” out.

This young man has repeatedly been kind to my son…faithfully kind, and so very patient and full of good humor. And over time, as my trust in him grew, my mother’s heart healed a little bit and my faith in the good things in this world was given a boost. I was grateful, every time I saw CJ’s excitement when his buddy would visit, and I began to hope hard as I watched a dream unfold.

CJ’s buddy got to play football in college. He was red shirted his first year and did not start for a couple of years. It had to have been frustrating and he must have been discouraged at times. Even with college classes and practice and a steady romantic relationship to tend to, he continued to visit CJ when he could over the holidays. Once, he had three days off between exams and practice for his bowl game. He came and spent more than two hours of that time with CJ…you guessed it…NOT getting to see the big play.

I kept accusing his mother over and over of forcing him to come visit. She kept insisting over and over that she had not.

His jersey number in high school was # 9. In spite of his buddy having a perfectly good name, CJ insisted on calling him Number 9 at all times. We got used to it. However, once he was in college, he was no longer a 9. He was now # 5. CJ went out of his way to explain that Number 9 was Number 5. I am sure people thought poor CJ was so confused and did not know his numbers, but he was spot on in his own loyal way.

Blake Bortles and Oviedo Challenger buddy CJ Williams

Four years of college came and went. Things started to change. CJ’s buddy was tapped to play. Bench went to second string to first string. Play he did. And the university team started to win. And win. And win. CJ’s pride and excitement for his buddy was a joy. He knows little about rankings or scouts or drafts. But he knows what a dream feels like.

Meanwhile, I was standing to the side with my mouth open, watching this young man’s star rise beyond wild dreams, holding my breath, watching his family holding their collective breath…so, so proud.

Not too long ago, CJ was watching old highlights from 50 years of FSU football. (Yes, we have old FSU games. We can’t help it.) CJ knows all the players, the plays and everything that has ever happened on the FSU field. That day’s respite worker asked him who his favorite player was. He answered right away that it was # 9. She was trying her best to figure out who #9 was, as there was no #9 on the TV screen.

Well…..#9 IS his favorite player EVER. #9 comes to his house. #9 spends time with him. #9 plays big football, but #9 is HIS friend. #9 is in the big photo framed on CJ’s wall. #9 has nothing to do with FSU and everything to do with CJ. # 9 is #5 now, but he’s still #9.

Last Thursday night, #9 was drafted into the NFL. He got the call. #3 draft pick and the #1 quarterback pick.

Let me say that again: #3 pick in the draft, and #1 quarterback.

Never, ever tell me dreams don’t come true. Sometimes, nice guys do finish first.

The Jacksonville Jaguars and the NFL might think Blake Bortles is #5, but to CJ and me he is and will always be HIS #9.

In between pro days and the combine, Blake made a special trip out to Challenger practice to meet with the kids. We knew he was coming, but were not allowed to tell anyone. NO ONE. The coaches didn’t even know. Blake’s mom printed 200 5×7 photos and Blake signed his name to every one and took photos with the kids for over an hour. He did not leave until the last kid and parent had every photo and autograph they wanted. Keep in mind this is a young man who was just days away from the draft…someone under tremendous pressure from all sides…and this was where he choose to focus his time and attention.

We were not allowed to call the press. We were not allowed to even tell the Little League players he was coming. He came in the back way and went out the back way. This was before the draft and we wanted to help him get some good press going in. Coverage of an event like this could have been PR gold for Blake.

No.

We offered to tell anyone that might help.

No.

We wanted to make sure that people knew what kind of man he was when no one was looking.

No.

That wasn’t why he was there. That was never why he’d been there. He got it, even if it took us a while to catch up.

CJ got it all along. Blake was there for HIM.

Of course, word did get out. Oviedo Little League was contacted last week by the National Little League. They wanted to know how Blake was connected to Challenger. They interviewed the director of Challenger. They wanted photos. An article was in the works. I sent in photos as requested, just as originally taken. The article just came out and CJ is mentioned.

Blake Bortles, Lindsey Duke and Oviedo Challenger buddy CJ Williams

I love that everyone now knows that THAT is how Blake acts when no one is looking. And I love that they know it after the draft, so they can believe it just like we always have.

(PS….his brother does exactly the same thing. His brother, Colby Bortles, plays baseball at Ole Miss. We’ll be seeing him in the MLB draft in a few years. Love, love, love those Bortles boys!)

Blake and his beautiful girlfriend Lindsey have been CJ’s friends, supporters and fans from those first football tosses on the Challenger field when no one could have imagined the paths two entirely different boys would take, or that a dream could be so generously shared.

To # 9 who is #5 but always #9, thank you…and I’m still holding my breath…for both boys.

Category: Amazed & Awed /

Long Live The King!

March 16, 2014 / Kathleen Williams / 3 comments

Back in October, I wrote a post called “Haunted Homecoming.” In it, I was struggling to come to terms with CJ’s peculiar popularity, which has taken him places in the high school hierarchy that most of us could only dream of when we were 18. I watched him hover around the Homecoming King and Queen that night, inside the group but a million miles away at the same time. And it hurt.

Since then, CJ has been hanging out with friends through the Best Buddies program. Best Buddies is an organization that pairs typical students with special needs students. During the year, they eat lunch together and spend time together. Typical kids spend time with the special students and everyone’s horizon grows. It has resulted in some incredible relationships for some families I know.

CJ’s school started a Best Buddies program a while ago. The program creates opportunities for the buddies to do some of the same things every other student does. For example, right now they are having a Walk-a-Thon to raise money and they’ve asked each student to try to raise $50. In less than 2 weeks, CJ has raised over $300. He is the highest on his team so far.

Tonight…was the Best Buddies Prom.

I thought it was just for his school. At first, I was just confused. I know what “Prom” looks like. I had no idea what “CJ’s Prom” was supposed to look like.

I knew he would never wear a shirt and tie. So, I ordered a green novelty t-shirt online with a tux jacket and tie printed on the front of it. He always wears green shirts anyway, and this way he would be in a “tux”. I knew the kids at school would love it. I celebrated my cleverness online with friends.

Then I found out that the event won’t be at his school. Instead it’s at the local Shrine Temple. Okay….

Also, it’s not just going to be his school It’s going to be kids from all over our area. Ah. It’s one of THOSE events. I have seen photos of other people’s kids at these functions. They all wear shirts and ties and even jackets. NOW WHAT?

Even my husband said that he could not wear the t-shirt, and that’s saying something. So off to the store with CJ. Joy. Shopping with CJ is like shopping with any boy who hates to shop, but really really magnified. I make him try on A shirt. One. Fortunately, I found a green one. I then find a tie that matches. I would have then celebrated my cleverness online with friends, except it is going to take an Act of God to make him wear this getup.

It seemed premature.

Last night was The Night. We started getting ready hours early. I got him to take a shower. I shaved him. Remember about trying not to cut a moving object? I rock. No blood drawn tonight! It takes 20 minutes to get him in his pants, belt, socks, shoes, and shirt. I even got the shirt tucked in. I made my husband tie the tie on himself before he went to work, as I haven’t tied a tie since it really mattered, which I think would have been my wedding, and maybe not even then. I didn’t even try to get the tie on CJ. It went in my purse for the future battle in the parking lot at the Shrine Temple.

It is not hot here in Florida right now, but by then, I was sweating like I had been working out, which in a way, I was. To escalate the entire traumatic process, I insisted on taking photos at each step. I decided that it would be funny to have a step-by-step of the torture I was inflicting on him.

I think I really do have an evil streak. Like any good parent.

The whole way there he asks me which way we are going. Do we turn here? Which direction now? I keep taking deep breaths. He wants to know what time I am picking him up. He wants to make sure they know how to reach me. Will I be waiting in the parking lot? I assure him that I know how to get there and continue to give him the next turn over and over. I explain that of course, they will want my number. I promise to be there right at 9 PM.

It was CJ’s brand of nervous, but I realized he was nervous about Prom. Like any high school kid.

We get there and have the “you HAVE to wear the tie” fight in the parking lot. I finally get it on him. We compromise by leaving the top shirt button unbuttoned. I just leave the tie a little loose. And Lo! and Behold! He looks good! I mean really good. Almost normal good. And that’s really good! I am so relieved. As we walk in, all the men are wearing ties and several are wearing jackets. Everyone looks fabulous. The girls are all done up with dresses, hair and make up. This is a real prom. We see several friends of his from other schools that he knows from baseball. We even see his favorite friend. I am relieved. CJ is relieved. In fact, I can’t even find him now. I’m the mom with the camera and I wanted a picture of him with his friend. Oh well, maybe when I pick him up.

We get to the front table and they have him sign in. There are blanks for name, school, etc. He walks up and signs a huge “CJ” in the middle of the page. They look a little taken aback. Secretly, I like his approach, but I walk up and shrug and sign him in correctly. But wait a second. There is no place for contact information. ???? Beg Pardon? I was then told that this was Prom. No parents allowed. There was a “lounge” over there for parents to wait in. Wait for 3 hours? No thank you. I made dinner plans.

Just before I left, I tell them that he is very concerned that they know how to reach me. Doesn’t he know my number? Ah, no. No, he does not. They direct me to the woman in charge who takes my information. I get temporary “mom with camera” permission to go into the room and take some pictures. Inside, I am greeted by a beautiful young lady who is taking photos with CJ. She informs me that she is the buddy from his school. My internal jaw drops. She says that she loves him and is always trying to get him to look at her, but he won’t. I explain that he literally can’t look at pretty girls. The prettier they are, the worse it is. She is happy to take my number and promises to call if he has any problems. I think I may have influenced her.

At 6:15, I happily go off to dinner, feeling things are far better than they could have been and sure that CJ will have a good time.

At 8:15, as I am leaving dinner, my phone rings. It is a buddy from his school. CJ is ready to leave. Seriously? Wait! I have 45 more minutes. I beat down my internal timekeeper with a sigh and tell them I am on my way. I am really disappointed. If he’s calling me to pick him up 45 minutes early, he must have had a tough time.

I walk in expecting to see him miserable. Instead I see him dancing with a gorgeous blonde girl in a pink dress. I walk up and he introduces me (he has to ask her name first). She does not go to his school, but was having a great time dancing with him. I thank her, blinking a bit at her pink blonde gorgeousness. And then CJ’s buddy from his school comes running up to me. She is practically bursting with excitement, exclaiming that she took photos for me. I…thank you. I ask her to send them. She keeps talking…a lot…something about the crown and the queen and the photos she took. Now I am confused. She is going to send me lots of photos of two kids I don’t know and haven’t met? Then she looks at CJ, and back at me and says “He is the King!”

Wait. What? WHAT???? How many Kings are there? Is there one per school? One for the special needs kids and one for the typical?

No. There is one King. ONE KING.

CJ IS THE PROM KING!!!!!

Now, I am shaking. I am confused. How did this work? How did they pick him? Who picked him? She had no idea. She said that he was having such a good time that they must have just wanted him to be king.

I have no idea who “they” are, and at this point, I don’t care.

I am trying to not cry as he leaves me standing there. He is the King. He is done. It’s time to hit the road. He tries to leave immediately while I am still standing there in shock, but they have stationed a guard at the door. This poor guy’s job is to block the kids trying to leave without their parents. CJ, however, got right by him. And then we have the guard running toward the exit door, trying to stop The King from leaving the building. CJ was bigger then this guy. He kept telling the guy that I was coming. Of course, the guy didn’t know if that meant “right behind me” or “an hour from now.” Finally the poor guy saw me in the hallway and was so relieved.

I am just trying to get out of there without breaking down.

We got to the car and CJ wanted to know what was wrong. Was I mad at him? What did he do? Who upset me? I was shaking and still trying to not cry. I called my mom to tell her. I couldn’t even get the words out. I started crying and had to wait to calm down enough to talk to her.

I posted on Facebook. I called everyone. And this morning, I still can’t process it all.

All he has talked since is how much fun he had. For someone going to a dance, who hates evening events and crowds, he had a pretty awesome time.

Last night I was thinking of all the times I had cried because CJ would never be anyone’s dream prom date. I was thinking of all that I always thought would never be. And last night, I realized that sometimes CJ’s reality is better than anything I could ever have hoped for.

As our friend, Steve, would say, “CJ has now surpassed us all”. None of us were ever Prom King or Queen. None of us would have even dreamed of it. CJ wasn’t anyone’s Dream Date when he arrived. But when he left, he was King!!

And he has the crown to prove it!

Long live King CJ!

Category: Amazed & Awed /

Just One of the Boys

August 7, 2013 / Kathleen Williams / One comment

It 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!

Category: Amazed & Awed, Happy To Be Here /

So Typical

July 12, 2013 / Kathleen Williams / 4 comments

I’ve been thinking about this post for days, because there’s still a part of me that can’t wrap my head around it all.

What do you say about the miracle of The Typical? What do you say about someone who is born into this world extraordinary, simply by being ordinary?

We waited a long time after CJ was born before we even dared to consider having another child. Both Chris and I loved CJ completely, but at the same time, we were scared to death. For a whole handful of reasons, we finally decided to go forward, hoping for something that anyone who hasn’t borne a child with a disability would simply take for granted. My soul went on tiptoe for nine months.

And then came Elizabeth.

Elizabeth with her clouds of hair that shift from chocolate to caramel in the sun. Elizabeth with her pixie smile and her all-girl attitude. Elizabeth, my completely typical, utterly unique daughter.

She excelled on every level from birth. She walked before she was 9 months old. She didn’t bother to toddle…she just skipped right over that part and stood and walked. She took her first steps and then she ran! She could speak in full sentences in her tiny, tiny voice before she was a year old. One day, when she was about a year old, she was walking around when I heard her count to ten to herself. I almost fell on the floor. I had spent years with tutors, therapists and manipulatives trying to teach CJ to count to 10. He was now 8 and still couldn’t do it. That had been our normal. And I knew then and there I was in trouble. Now I was dealing with both ends of the spectrum.

Elizabeth was born older than her years in so many, many ways. They call such children “old souls” and she came into this world with a strong sense of right and an inner knowing. Give her good information and she will (usually) make good choices. She is confident and direct and she continues to be (mostly) unimpressed by people with special needs. Life with CJ has led her to conclude there’s nothing special about it. CJ is special because he’s her brother, not because he has autism. We have a friend with a daughter with Down ’s syndrome. E usually goes out of her way to help protect this girl. Lately, she has been irritated with her and not always so nice to her. I finally realized that she was treating her like she treats anyone else annoying. The girl was a person and she was irritating her, period. I couldn’t say she was wrong.

Elizabeth is around special needs kids on a regular basis and doesn’t seem to care much. I always say that nothing intimidates her. She lives with CJ. She is not scared of boys or kids bigger than her. She will take on the big boys at school in foot races (and often wins). She takes on the bullies too.

She is a normal 10 year old girl. This means she drives me nuts. She rolls her eyes. She fights with her brother. She doesn’t do her chores when she’s supposed to. Sometimes she’s messy and thoughtless, like any kid. But she is also wonderfully understanding and kind. She will stop whatever she is doing to help me with a problem with CJ.

Once I was in the middle of telling her how much she had irritated me that week by not doing what she was supposed to…and then I realized that she had dropped what she was doing to help with CJ more than one time in the last day. I took a deep breath and then called her back over. I told her that I really appreciated how she helped me, and that it really made a difference, when I was in the middle of something, that I didn’t have to stop to take care of what he needed. She looked at me and said, “I don’t mind. I want to learn as much as I can about helping people with Autism so that one day if I have a child with Autism, I will know how to help them.”

???!!???

Not “Autism is my worst nightmare”. Not “having a child with any special need of any kind would ruin my life”. Not even “CJ has ruined my life”.

I never would have guessed.

For the parent of a child with autism, there is no typical. There is only extraordinary.

Category: Amazed & Awed /

Thank you

June 2, 2013 / Kathleen Williams / No comments

As I continue this journey with the support of friends, we have set up a Twitter account and a Facebook account for Autism Moves Out (something I never thought I’d do). I think I mentioned in my very first blog post that I wasn’t really sure if a blog would be worthwhile…or even possible for me to do. I’ve had this idea…this vision in my head for a while now but I figured that stories about my family and our “adventures in autism” wouldn’t really be interesting to anyone who wasn’t living it.

I’m not sure what I expected exactly. I have told people about the blog and tried to describe preparations for a foundation. I figured some people would laugh. I thought some people would ignore me or just change the subject. I figured that unless you had a reason to care, you wouldn’t.

I have been thrilled to find that every single person I have told about this has been interested. Almost all of them have asked good questions and/or offered information. I have had people send me contacts and web sites. I have had people tell me about group homes for other disabilities. This has lead me to my favorite site so far, a company that is a home for Alzheimer’s patients and uses a model close to the one in my head. People I don’t even know and have no idea how they found me are reading the blog and liking me on Facebook.

This has helped fuel me and make me believe in this more and more. The more people I meet and talk to, the more I realize how many parents there are out there that need or will need the same things we do, and this only motivates me to continue. My greatest hope in all of this is to not just make a true home for my son, but assist others in creating homes of their own.

Thank you.

Category: Amazed & Awed /

It’s a Gift

May 24, 2013 / Kathleen Williams / No comments

Last 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….

Category: Amazed & Awed, Happy To Be Here /

Autism Kicks Off

May 9, 2013 / Kathleen Williams / No comments

One of the great joys of CJ’s life is sports. He helps with the varsity baseball and football teams at high school. The true love of his life is HIS Challenger baseball team. He has been in heaven since we discovered Challenger.

With Challenger, for the first time he was allowed to play…really play…with his own peers. These peers are HIS friends. He talks about them. He has photos of them in his room and in his albums. He talks about them and even hopes to eventually live with some of them.

The biggest difference between Challenger and other leagues is that Challenger lets the kids play. The kids have buddies, but they are high school kids, not adults. And the buddies are not allowed to pick up or even touch the ball. The only exception is if a kid can not physically pick it up. They will then pick it up, hand it to the kid, and the kid will throw it.

When we started, the kids couldn’t do anything. Balls were going everywhere. Almost everyone hit off a tee. It was controlled chaos, and one might think, seemingly pointless. But now, only a small group hits off the tee. The kids attempt and often complete plays. When they are out, they are out! There is no “everyone gets to run bases”. It’s the real thing. They love it! They love tagging each other out. They learn to deal with getting thrown out. It’s real ball with real kids and the only exception to the general rules is that, at the end of the game they all “won”, if you ask them.

The buddies are varsity high school baseball players from the local schools. We have had buddy players who have gone pro and to college on scholarships. We have several who come back to visit or participate when they are home. I have seen times when the buddies were getting more out of this than the kids themselves…more than once. There is something to be said about arriving, bummed about losing a major game, and then watching these kids and spending a Saturday morning with them. It puts things in perspective.

I have a couple of things I say over and over. When you have a child, you have the same dreams for that child as everyone else. It is a boy! He will play little league! If he is good enough, he will play in high school. He shows some early talent, so who knows? He may get a college scholarship. And the ultimate dream for everyone would be to play in the pros. Why not?

Then you get “the news”. One by one your dreams for your child fall away. There will be no pros, then no college, then no high school. Little league? Maybe a “special” team. You look, and find that no one will actually let these kids play, though. And then we found Challenger. Challenger gave back to all of us a little of what we had started to think he would never have. He has HIS team with HIS friends. He gets to really play. He loves it!

The other thing that I say over and over is that if you think the youth of America are going nowhere good, come out on a Wednesday night or a Saturday morning and sit with us. The buddy’s teams may play until after 9 PM and then will have practice on Saturday morning. But they still come out with our kids. They have jobs, girlfriends and are taking tough classes to get into college. But here they come. We have had buddies take off of work to come with us to jamborees. We have had adults rearrange out of town trips to be back for games or so they don’t miss practices.

There are AMAZING kids all over! And CJ helped me see that.

Category: Amazed & Awed, Happy To Be Here /