Archive for October 14, 2014

Crazy Cool

Keep Calm & Go CrazyNo Ordinary Day

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

The last few weeks have been…well…insane.

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

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

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

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

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

 

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

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

He asked what I thought.

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

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

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

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

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

Apparently, I lack imagination.

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

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

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

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

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

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

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

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

 

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

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

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

CJ football gear

 

 

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

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

They gave him a number:  89.

 

 

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

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

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

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

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

 

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

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

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

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

To interview CJ.

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

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

For an interview.

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

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

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

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

 

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

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

 

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

Fan Club!

 

 

 

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

 

 

 

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

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

CJ and Karina

 

 

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

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

 

 

 

 

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

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

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

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

 

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

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

 

 

 

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

 

 

 

 

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

https://www.youtube.com/watch?v=bLpZQzmyf54

 

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

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

 

191652Last Stop on the Crazy Train

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

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

He's a pro!

 

 

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

 

 

 

 

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

I took a nap.

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

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

I think this pretty much sums it up.

 

My bag full of broken dreams is lighter today.