When 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.
And then he turned around.
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.
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.
It’s been a couple of months since I posted. Feels like about three weeks.
CJ had his fifteen minutes of fame and got quite used to his new normal of The Entire World Has Gone Green Just For Me. A month after all the excitement, the “winning” touchdown, the TV cameras, and people wearing green body paint in the bleachers…well…all I can say is, thank goodness Christmas came right up on the backside of it all, because nothing less than Christmas could keep CJ’s enthusiasm for his own life up as high as it’s been.
I love everything about Christmas. Love the decorating. Love the baking. Love the making gifts, the holiday shows, the lights. CJ loves parts of it. It’s overwhelming and overstimulating…but he absolutely demands we produce a Christmas tree and outside lights. It’s mandatory. He also insists on knowing when everyone one else is going to decorate their trees and houses, and waits impatiently for them to get to it. Of course, just as soon as we get everything up and lit, he starts wanting to know when we’re going to take it all down. It’s a fine line, timing it right so he doesn’t build up too much of a head of anxiety on either side.
He also loves giving Christmas gifts to everyone. As he’s never been voluntarily holiday shopping in his life, this means he is actually volunteering and offering step up for anything that needs to be made or done.
The fact that he is actually volunteering me to bake and knit and craft is completely beside his point. He’s one jingle hat short of Santa CJ and I am his elf. And now that his social life and contact list have blown up in the wake of all football excitement, my normal short list of teachers and neighbors turned into 30 containers of Christmas cookies plus extra for the coaches’ office.
I’m gonna need a bigger oven.
Along with the tinsel and lights and cookies came a phone call from my doctor. I’ve had a place on my liver for about a year now that was concerning, and after a new round of internal close-ups (bad lighting, no makeup), while he thought it was benign, he decided it had to come out.
Well. Merry Christmas to me.
At that point, everything became a blur. Anyone who knows me knows that I am Douglas MacArthur, Genghis Khan and Judge Judy, rolled into one organizing, do-not-get-in-my-way-when-I’m-on-a-mission-or-I-will-roll-over-you-with-my-minivan Commander In Chief. Suddenly, December 25 was just a stopping point on the way to mid-January, when I would have to actually set foot inside a hospital for the first surgery of my life.
Just for some perspective, I would rather give CJ a haircut and shave every day for the rest of my life than spend two hours getting hooked up and prepped for…anything.
So while my oven was turning out dozens of cookies, I began making lists. Lots and lots of lists. It gives me the illusion of actually having control. Especially when I laminate the lists and I can see at least one over every major appliance and from any angle where I stand inside the house. With lists, even if I didn’t make it through the surgery, I would still be there, telling everyone where to go and what to do and how to do it.
Meanwhile, Life, with a Capital L, kept on coming.
CJ got a letter, a cap and a signed ball from a Kansas City Chiefs player (that was a jaw dropper, and one of the nicest letters I’ve ever read). Then he was awarded his football letter along with the rest of the team (didn’t see that one coming and another jaw dropper). Then, and I am not making this up in a post operative fantasy, CJ was voted MVP by the entire team. After I picked my jaw up off the floor yet again, I let the coach know I was concerned that a very deserving player on the team had missed out on the honor and I wasn’t quite sure what to do. The coach, a man after my own organized heart, did a recount and realized that the second place player had voted for CJ too. The whole team had decided.
I suppose it’s true that he did play in the only game they won this year. We’ll take it.
CJ now moves the MVP trophy from his bed to his table in the living room to the floor in his bedroom, depending on wherever he is at the moment. He holds it while watching “his” press coverage saved on our DVR. He would sleep with it if he could figure out how.
I took Elizabeth with me to visit my sister in North Carolina. I had seen snow once, but I never got to see it actually fall before. My husband stayed home in Florida with CJ and we actually got to fly instead of road tripping with CJ. I love my son, but it was crazy how unstressed I was. There was a six hour flight delay and three hours sitting in the airport, and I just kept smiling and smiling until nobody wanted the seat next to me.
OH! I forgot to mention that CJ had his first date!! He took his Best Buddy to Steak N Shake. Of course, this means that I had a first date too, as I went along. I discretely sat at another table, far enough away not to cramp his CJ style, but near enough to hear now and then. And take a few photos. Poor CJ.
Mind you, his Buddy is drop dead gorgeous. She won a scholarship pageant, plays basketball and has interviewed with Harvard and Yale. She’s is bilingual, and is even more beautiful in the inside than the outside. She told me later that CJ talked to her that night more than he ever has. She told me that he told her all about how Elizabeth and I spent New Years at the beach.
Beach. Snow. Close enough.
Aim high, CJ. Aim high.
Mercifully, school started back up, which gave me the time I so desperately needed to start really freaking about over my upcoming surgery. Even ignoring my fear and loathing of hospitals and needles of any kind, there was still the fact that someone was going to carve on me, and me and a piece of my liver were going to part company. And somehow, some way, the world was going to have to struggle on without me for at least a week.
This is exactly what OCD freak mode is for.
I typed. I washed. I shopped. I scheduled. I worked up directions for the oven, the washer, how to clean the floors, work the locks on the fridge and pantry, how to clean the bathrooms, use the microwave, use the internet and shop for food. I stocked up on chicken nuggets and pretzels. I emailed teachers. I printed labels. I made an entire notebook, and if it wasn’t in the notebook, it was laminated.
I was in my element…in my glory. I eventually realized what I was doing was what is second nature to me now: making sure that everything in CJ’s life was as close to unchanged and normal as possible. If he knows what to expect and what to do, then he can deal, which means everyone else can deal too. Surgery, smurgery. I was preparing to delegate my role as Supreme Commander of the life of an person with autism, and Eisenhower on D-Day couldn’t have done any better.
And, thankfully, everything turned out fine. All results came back negative, no one starved and the house didn’t burn down. We couldn’t have asked for better, kinder support from friends, family, neighbors and our church. I have had more offers of help than I could ever accept. I have to admit, it’s nice to be needed. But it’s also good to know that my family can step up when they need to.
Turns out, all this is cramping CJ’s style though. He needs me to get back to normal as soon as possible so he can go on a second date.
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?
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.
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.
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.
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!
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?”
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.
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?
CJ: So, she’s funny. She’s really funny. My sister? She’s cute?
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.
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.
We offered to tell anyone that might help.
We wanted to make sure that people knew what kind of man he was when no one was looking.
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.
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!!
As my friend sat, staring at me a bit blankly across the table at lunch today, I had another of those little realizations that pepper your world when autism comes to stay at your place. Yeah, we all know that your normal is not my normal. That’s a given, and I get that I’m the one that’s fallen down the rabbit hole. After a while, things just seem normal to me that would send most people looking for the “Wake Up!” bottle. But I also realized that sharing rooms with autism has made me literal. Very, very literal.
I had made a comment about the locks on my cabinets. Justine looked astonished. She said, “You mean you have actual locks…on your cabinets?”
Uh, yeah. What I said. Now, Justine has known us since before CJ was born. She is a regular reader of this blog. She’s as “in” in terms of understanding as anyone else in my circle. But all this time, when she heard me say “I locked the food up,” she thought I meant that I put it away. You know. On the shelf. In the pantry. Like a normal person.
“No,” said I. “I have bike locks on the cabinet and refrigerator.”
What was really weird was that at the same time I was acknowledging inside my head that having locks like that was strange, I was also thinking of several other people I could name off the top of my head that I know who also have locks at their houses.
The rabbit hole can hold a surprisingly large amount of people.
All this, of course, leads to the next question.
One of the many, many effects of autism is that it can screw with a person’s appetite and digestion. And not necessarily together. A person can be terribly hungry all the time, but have trouble digesting and processing food. Or a person can have little or no interest in eating but digest just fine when they actually do eat. Or any combination or degree of the above.
In our house, autism is HUNGRY. All the time.
When CJ was little, I would get his snacks for him as you would expect. He asked. I gave or withheld as appropriate. Good mommy. As he got older, he was able to get more and more things for himself. I thought, “Independence!” and also a break for Mom. What an excellent job I was doing! Until the day that I bought and put the groceries away, and returned an hour later to discover there was no proof I had ever even left the house. Everything snackable and openable without a tool was gone. I suddenly realized that “self-serve” wasn’t necessarily in anyone’s best interest here because it didn’t come with an “off” button. Despite my best lectures and hair pulling (mine, not his), my groceries kept disappearing, along with my food budget for the week and dinner for the rest of my family. Now we were hungry too.
I started to get creative.
At first I would just put things up higher up in another cabinet. Inconsiderately, CJ grew. I started putting the snacks in my room in the closet. Mom’s room was off limits.
Then I started keeping our food in the trunk of my car. Guess who found the keys to the car?
I have a secretary desk in my room that locks. I shoved the food in there. He broke the lock and forced it open.
Of course, it was never HIM…no no…when the snacks were all gone. He would tell me this standing in the middle of a trail of crumbs on the floor leading to his room with more evidence around his mouth for added emphasis.
We have an old coat closet, between the garage door and the bedroom that has been converted into a pantry. It’s a double door arrangement with two handles. The goal was food in, CJ out. We tried a child lock, but he could work that. So now we have a bike lock wrapped around the handles. If CJ figures out how to crack this one open, no bike or bag of chips in the neighborhood will be safe.
With the pantry problem solved, the refrigerator remained, a cold, vertical, well-lit buffet for the 3 am snacker with no off switch.
We went shopping. The big requirement for a new refrigerator was having handles that would work with a bike lock. Try explaining that to the salesperson on the floor at the big box store.
If the locks are not tight enough, you can pull the doors open a crack and reach an arm in. If your arm is long enough, you can reach snacks way in the back. Guess who has really long arms? The only problem is that the opening is big enough to get your arm in…but not big enough to get it back out again with your ill-gotten snack booty.
One day, secure in the knowledge that my hunting and gathering were protected by the best that Kryptonite and Masterlock had to offer, I drifted off into an afternoon nap. Not long after, I awakened to screams of terror and pain. Clearly, there was a fire with traumatic burns or an partial amputation or a collapsed wall with crush injuries in the next room. Nothing else could possibly have provoked the roaring din coming through my bedroom wall. I heroically rushed in to save whatever was left of the house and/or my son…to see what had happened.
Nothing had happened. He had cracked the fridge door and put his arm inside to pilfer a goodie and he was stuck. He was stuck because he refused to let go of the lemonade container or the snack in his hand. Yes.
This has happened more than once.
The doors to the pantry are hollow. Hollow doors do not hold handles well when a great deal of force is applied…and I assure you, a great deal of force has been applied. After all, there are Cheetoes or pretzels or “insert your favorite snack here” on the other side of the door. This has led to many, many, many repairs to the doors. We now have long screws that go all the way through the door with bolts to hold it all on. My husband is convinced we will never be able to sell the house now, because it would be too hard to explain.
Everyone except CJ knows to lock the cabinet when done. It is funny that I will go to open it even when he is not here and one of us will have locked it out of habit. We have the combinations written down and CJ knows where they are. He will helpfully tell the respite worker where they are when she visits. Luckily for me and my grocery budget, he hasn’t figured out how to work them.
It’s a powerful word. Most of us have some experience with church. Most of us have expectations about what church means, how it sounds, what it looks like, who should (or maybe some think shouldn’t) be there. Pastor, preacher, priest, the music, the message, the crying babies, the hands in the air, the sitting, the standing, the interesting outfits and sometimes more interesting hairdos, the sleepers, the clock watchers, the litany, the liturgy, the sermon, the communion, the mass, the scripture, the bathroom breaks, the hymns, the call to the altar.
So far, I’ve never heard anybody mention the autism.
CJ and church. It’s an interesting combination. Not the first place you’d think of, or the first choice you might make when figuring out how he should spend a Sunday morning. Think about it. A church experience makes sense to you because you’ve been exposed to it and you understand the reasons behind it. But any religious service is going to be a strange, confused event to someone from another religion or culture. Now imagine what it must seem like to someone with autism…another planet. It’s a weekly trip to sensory overloaded irrationality.
It’s required patience, persistence and occasionally a change of church to get us to where we are today. When CJ was a toddler, we were asked not to bring him to the nursery of the church where we attended at the time. They just weren’t equipped to handle him in there. Of course, I wasn’t equipped to handle him in the main service either. But, we are determined church-goers, so keeping him at home really wasn’t an option for us as someone would have had to consistently miss church. So we gritted our teeth and prepared ourselves to be the inevitable center of attention and let the chips fall where they might.
I have done an informal poll. It seems that most organized religious groups are pretty tolerant of this sort of thing. They are glad you’re there. They usually want to help. They just have no idea what to do.
I know the feeling.
CJ has grown to enjoy church, something I never would have expected. It’s not always easy for him to contain or control himself, but he seems willing to put up with our expectations that he sit in one place and keep the comments to himself as best he can. In return, he gets the worship music.
You’d have to see CJ during worship. There is no way to describe it with words. We attend a “contemporary” service (drum set, guitars, etc). He knows most of the songs by now from church and from the radio. The music starts, and so does he. He starts out slow. Soon, he may sway side to side. He’ll usually sing, and he’s always off by a beat and behind by a word. If you stop listening to the congregation and start listening to him, it will screw with your brain, and I’ve seen it happen to the people around him. If the song is a lively one, he will start raising his hands. While there are some people at our church who raise a hand or two quietly in a moment of great communion, we’re not exactly a Pentecostal hotbed of hosannas and hand waving. CJ did not get this memo. If he’s moved enough to put his hands up, he’s going to wave down showers of blessings even if it clears out the pews around us. And if it is a particularly inspiring song for him, he will start dancing. David danced before the Lord, and so does CJ. Sometimes, I’m tempted to hand him a tambourine, just to see what would happen.
Our musicians are known as “the Worship Team,” and whether they like it or not, CJ is their biggest fan. If they ever go out on tour, I’ll have to buy front row tickets. When they gear up to deliver the musical message, CJ has been known to yell out “Hit it!!,” more than once. To their credit, The Worship Team doesn’t usually react. Once or twice I have seen them caught off guard and someone will crack a smile.
Nothing will ever beat Easter Sunday a couple of years ago. It was standing room only in the church, as Easter often is. Halfway through the service, I looked over and CJ was literally dancing in the aisle.
I have asked other parents of kids with autism. Most have had at least one negative experience with a church. Of course, churches are filled with imperfect humans. We once had the minister of a different church we were members of at the time make a comment in the middle of the sermon about the occasional noises CJ was making. (In his defense, he did call me to apologize later.) But most of those parents have had wonderful experiences in churches, too. My friend’s nonverbal son was even allowed to have his Bar Mitzvah.
I’ve learned now to look for and expect the best from the people in our church, and to forget the sour notes. As soon as we are sure that we have scared someone new away, or annoyed an older person, those same people come up to us after the service and tell us how much they enjoy watching him. OK. If you’re going to take something on faith, where better?
My comment to the poor bewildered new people sitting around us is always, “There is no extra charge for the additional entertainment.”
One week from Thanksgiving. One week and one day before Black Friday bleeds into Brown Thursday (stores open at 6 pm!). It’s time to bake the bird and then start hauling out the tinsel and garland and strings of lights. Time to dust off bad holiday sweaters, 18 different versions of “Silent Night” on 18 different holiday albums, and family traditions while counting the number of shopping days left. Time to panic about how little time is left to get it all done. Time to bounce between looking forward to so much of it all while wondering at the same time when it will finally be over.
Really not that different from CJ’s point of view, that last part there. He has a special relationship with the holiday season, sort of like when Dumbo had a special relationship with that bottle of champagne and got pink elephants. For us, Christmas is a combination of stress and joy. For CJ, it’s an annual ticket to a roller coaster of sensory overload.
We’ve learned so much over the years…survival techniques that give CJ a fighting chance to enjoy some of the holidays without being buried in stress and confusion. Not everyone around us understands or approves…after all, our traditions are not all “traditional.” Autism can color our family’s red and green another shade entirely at times, and looking at it from the outside in, one might be tempted to write us off as spoiled or frustrated or inept or unpolished or undignified.
So, as CJ’s advocate, translator and shield, I’ve developed my own little holiday tradition. To friends and family each year, I send out a letter from The Other Side. It’s one that’s been posted on sites all over the Internet. I have no idea who wrote it originally, so I can’t give credit, which is a shame, because it’s worth crediting. The letter was an eye opener to me the first time I read it, even though I’m in the thick of things and you’d think I’d get this by osmosis by now. It’s a timely reminder as we go about our business that the holidays are not just a time of giving and receiving, they’re also a time for a little extra patience and understanding.
Dear Family and Friends:
I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, a hidden disability called autism, or what some people refer to as a Pervasive Developmental Disorder (PDD), challenges me. Autism/PDD is a neurodevelopment disorder, which makes it hard for me to understand the environment around me. I have barriers in my brain that you can’t see, but which make it difficult for me to adapt to my surroundings.
Thanksgiving & Christmas are some of the roughest holidays for me. With large crowds and holiday shopping it can be very overwhelming, even a bit scary. When planning a party remember that with my over sensitive hearing and eye sight, Christmas trees and holiday smells can cause me mild to severe pain or discomfort. If the noises are impossible to control a personal stereo with headphones set to a safe level for children may help drown out background noise and ease my discomfort.
Sometimes I may seem rude and abrupt, but it is only that because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes in math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are all different and need various degrees of support.
Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by okay. But if something, anything, changes, then I have to relearn the situation all over again! It is very hard. When you try to talk to me, I often can’t understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you-I am not. Rather, I am hearing everything and not knowing what is most important to respond to.
Holidays are exceptionally hard because there are so many different people, places, and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it’s very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.
If I cannot sit at the meal table, do not think I am misbehaving or that my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people–I just have to get up and move about. Please don’t hold up your meal for me–go on without me, and my parents will handle the situation the best way they know how. Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it’s no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch, AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not being picky-I literally cannot eat certain foods as my sensory system and/or oral motor coordination is impaired.
Don’t be disappointed if Mom hasn’t dressed me in starch and bows. It’s because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else’s house, I may appear bossy and controlling. In a sense, I am being controlling, because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn’t mean you have to change the way you are doing things–just please be patient with me, and understanding of how I have to cope.
Mom and Dad have no control over how my autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown-ups call it “self regulation,” or “stimming’. I might rock, hum, flick my fingers, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The grown-ups call this “perseverating” which is kind-a-like self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a certain degree because they help me calm down.
Please be respectful to my Mom and Dad if they let me “stim” for a while as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents’ feelings to be criticized for being over protective, or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.
Holidays are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it’s very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don’t possess the neurological system that is required to follow some social rules. I am a unique person–an interesting person. I will find my place at this celebration that is comfortable for us all, as long as you’ll try to view the world through my eyes!
This letter has changed our lives over the years. I hope it will make your holidays just a little smoother as you hit the stores and parties.
Johnny Cash and June Carter Cash laid down a music track in the 60’s that made rock and roll history when they recorded “Ring of Fire.” And it wasn’t just any old fiery ring. It was a “burnin’” ring of fire. Seriously off putting. A serious warning.
I always thought they were talking about the heartbreak of passionate love gone wrong, involving months of emotional recovery, and maybe a trip to the doctor for antibiotics. Turns out, they were talking about dealing with the State of Florida and the Social Security Administration.
I tend to think of the government as a three-ring circus, as a matter of routine. Except there’s, like, several thousand rings: Congress, the legal system, HUD, DOT, the IRS, the DMV and of course, the SSA, to name a few. At some point, all of us will be called upon to perform in one or more of these rings. It’s called “doing one’s civic duty,” otherwise known as “avoiding prosecution.”
And how does one perform, once in the ring? Why, by jumping through hoops, of course. Big hoops, little hoops, hoops between two high stands, high hoops, low hoops. And if it’s your misfortune to be called to interact with the DMV or the SSA…burning hoops.
Burnin’ rings of red tapey fire.
Of course, at the circus, it’s all cute little acts with cute little dogs (even cuter if they’re rescue dogs). Once in a while, you get ponies or even lions and tigers (no one mentions if these are rescues, but they must be…only people run away to join the circus). And big, small, tooth or claw, everyone is jumping through hoops.
Sometimes I feel like one of those animals. Except not so cute. And there’s no rescue in sight.
Ring 1: We hire a lawyer to draw us pictures of all the hoops we’ll be jumping through to become Guardian Advocates and mapping out the order of the jumping. We fill out all the documents. We pay all the fees. We dance. We sing. We wait.
Tah dah! We are officially Guardian Advocates for CJ! Nice jumping!
Ring 2: The GA paperwork comes back. We’ve passed. We’re in the club. Except now we’re told that we have to take a class. A class. Well…why not? Why wouldn’t we have to take a class? I mean, we’ve only been CJ’s parents for 18 years. Of course, we didn’t need a class for that. But now they require a class, so a class we’ll take!
It’s a hoop. I jump. I go on line. I call. I email. I knock. It turns out that in the entire central Florida area there are exactly two locations to take this class. Okay…I can drive. Oh but look! There are exactly two dates between us getting the paperwork and the deadline for the class. If we do not take this class, we are in contempt of court. Poof! Burnin’ ring!
I am told by our attorney’s office and the people who conduct the classes that the courts are usually not really strict on it. Yeah, I’m sure you’re very nice people, but…let’s just not take that chance. Because if you look up “Poster Child” in the Burnin’ Ring Guide Book index, there’s a blank spot just waiting for my picture. Just what I want to be, the one case that they decided to be strict with. Kathleen Williams, “The Accidental Example.”
So…I sign us up. Us. Oh yes, my husband and I BOTH have to go. And look! If we go together, we can save $50. Apparently, you can put a price on togetherness and it’s the price of your desire to be alone less fifty bucks. I make arrangements for childcare. Medium hoop. My husband takes off work. Little hoop masquerading as a big hoop. We jump. We pose. Man, look at how nicely those hoops are lined up!
Then I get the phone call. The class date has been moved. Poof! Burnin’ ring!
The message on my phone states: “The class has been moved to 10/31. Don’t worry. No costumes are required.”
Costumes??? What on earth does that have to do with anything? Can you imagine the picture in my mind, given my circus idea?? I finally calm down and realize that day will be Halloween. Obviously, my sense of humor is gone by now, scorched by the fiery hoop in front of me. There is nothing I can do. It’s the government. I call my husband. “Switch your day off! Immediately!!!” I call my friend. “Can you switch everything you already switched around to help me with childcare??” I call the government a few names, in private. Then I break down. I am DONE!
No, I’m not.
Ring 3: Social Security Disability. The Social Security Administration wants proof of CJ’s disability. Our paperwork plus the doctor’s paperwork isn’t enough. They want living, in-the-flesh, proof that Autism isn’t just a fancy word for defrauding the US government. As a US tax payer wanting to know my tax dollars are being well managed, fair enough. As a wife, mother and imminent Foundation founder with a calendar too fat to fit in my purse any more, give me a break! But hey! It’s a hoop! Uncle Sam says jump, I say “how high?”
Hoops, hoops, hoops. We fill out the paperwork. I send in all the documents. We get a phone call to set up an interview. That morning, I take CJ out of school. As I roll to the appointment with CJ muttering and commenting continuously in the car seat next to me, clearly with no idea that our financial lives are basically on the line, I work myself into a quiet state. Will he pass? I mean, will he fail? Will he pass by failing? I mean…wait…and could they possibly evaluate CJ and determine that he is NOT disabled and tell me to ship him off to the Marines or something?? Poof! Burnin’ ring, jumbo sized!
I am sure that I am going to have a full blown panic attack now. But in to the SSA we go. If anyone notices the smell of my well-singed imagination, they are too polite to mention it. The funny thing is, the SSI people have all been nice. I mean really nice. Really, really nice and very, very helpful. The people on the phone. The person who did the interview. I was shocked, frankly. They all have such a horrible reputation for obstructing and denying. But it was all fine. I did not have a panic attack. CJ was not shipped off to the Air Force. Now what? Now we wait. Of course we do. “They” will notify us of any additional information they need. “They” may want us to have an independent evaluation. OK.
Oh look! Another hoop.
Back home, I ask around. I’m told by everyone who has any experience with this process that once they get the doctor’s notes, they usually drop the request for the individual evaluation. In fact, I can’t find one person I know that actually had to go through that. We, however, are special. We have to do it. Our reputation as prodigious hoop jumpers must be getting around.
I get a letter in the mail on Wednesday stating “they” have scheduled an appointment for us with a doctor at 3 PM the next Tuesday, approximately 30-45 minutes from our house. OK. Here we go again. Pull CJ out of school. But what to do with Elizabeth? She gets out of school at…you guessed it…3 PM.
OK, fine, I’ll jump. I’ll pull her out of school early and bring her with us. No…no, I won’t, because the paperwork specifically states that you may NOT bring any children with you to the appointment and you may only bring one other adult with you. The longer I thought about that, the weirder it got. I assume the prohibition on extra kids is to keep distractions out, but the extra adult? Would that be to hold CJ down or to talk me out of my tree? Maybe it’s to hold the now-flaming hoop of this appointment.
I call my friend, again. Help! She says she will pick up Elizabeth and keep her until we are done. And when will we be done? The paperwork says to plan on “several hours.” I must admit to some grim laughter at that one. If we start at 3 PM, we’ll be cutting into CJ’s dinner time by 4:30 or so. Good luck with that one, Evaluator Doctor Person. One flaming hoop, right back at ya.
I am thinking it may not take that long once they meet him. If you’ve met CJ, you’ll understand.
I call the SSI office. I speak to the woman who was nice, but a little short with me the last time. She confirms that they have received all the paperwork from the doctor, yes, but it was not enough to make a decision. Why not? Well, she can’t even tell if the woman who wrote our letter is a doctor. Um. Yes. Yes, she is. It clearly states “MD.” RIGHT ON THE LETTER WHICH WE ARE BOTH LOOKING AT RIGHT NOW. But…whatever they want. We will do it. We will see their doctor. Please. Just stop flicking those Bics.
Ring 4: I’m told CJ needs to bring his photo ID. But he still doesn’t have one. Why not? Because it’s the DMV and why stick your hand in a meat grinder before you have to? Now I have to. I quick make an appointment with the DMV (by definition, a burnin’ ring of fire) for the next day, still undecided if he should go for the driver’s license or just get an ID card. (Who knows? Christmas is coming. Maybe we should get him that truck after all. If they decide he’s not disabled, he should be able to drive, right?)
Off we go to get the ID. It takes less than 25 minutes in and out the door. No fire, no burn, only minor jumping. The best part of all is when they show us CJ’s photo, and he announces loudly to the entire room, “I love it!” (It only took 2 takes. THAT might be a record.) I look at the photo guy who’s smiling. “I’ll bet you don’t hear that often,” I say. Once again, CJ is making them all smile.
Ring 5: Next stop…the SSI doctor to determine if he can work and support himself. The SSI worker said the evaluation might take “several hours.” I figure about five minutes should do it.