Autism Moves Out

TeachLivE is for Lovers

July 8, 2014 / Kathleen Williams / One comment

Worlds Apart

Picture yourself, a humble, sincere, vaguely panic stricken education student just about to step in front of a class room full of middle school students for the very first time. You have the best that a college education can give you and a handful of memories of your own school experiences (which probably doesn’t help) and an evaluator watching in the wings.

Extra strength antiperspirant, anyone?

Now imagine yourself seated in in that same class room, surrounded by young people your own age. They’re laughing and talking and coughing and moving in their seats, tapping toes and rummaging through backpacks while cell phones ring and the air conditioner hums and clatters in the background as the fluorescent lights overhead put out a high pitched buzz. The sound of heels clicks on the floor outside the door as people walk by, chattering. Someone is writing with a squeaky erase marker on the dry board on the wall while the person closest to you slurps from the bottom of their foam cup through a straw. A chair scrapes across the floor as someone stands up and the chains on his jacket jingle when he does. Behind you, someone pulls open a crackly snack bag and the smell of Doritos rises into the air. Every scent and sound is equally strong. Each one demands your attention. Nothing gets filtered out.

Then someone jostles you, squeezing by and calls your name. You look up at their face. It fractures slightly into a thousand pieces, each shifting slightly differently as the mouth and eyes and jaw bone move. The confusion is overwhelming. You can barely process what they’re actually saying, looking at that bizarre spectacle. You look away instantly, anywhere else but at that face, but the painful sensation of that glance stays with you, and you start to rock back and forth to help push the feeling away. It doesn’t help much.

And now, it’s time to be social and learn!

World Building

An Educator and an Engineer walk into a bar….

Stop laughing. It could happen.

In fact, at the University of Central Florida, it did.

UCF Engineering Smart Guy: Why not give these brand new teachers a chance to get up in front of some computer generated students first? You know, test it out with software students…control the environment.

UCF Educator Brilliant Person: Uh. If we’re controlling the environment for them, how does that train them to control the classroom themselves? Where’s the random? Where’s the real life?

UCF Engineering Smart Guy (beginning to sweat with excitement): So, it needs to be real! And digital! Really really digitally real!

UCF Educator Brilliant Person: Uh…have you seen “Avatar?”

>Phone rings<

Speakerphone: “Hello? This is Bill and Melinda Gates. We felt the earth move here in Redmond, WA, and we have a grant for you.”

And thus was born “TeachLivE, at least in my fevered imagination. A research team at UCF has created a virtual classroom peopled by avatars. (An avatar is a computer version of a real person. The viewer sees the computer version on a screen while the real person controls the avatar behind the scene. And no, they’re not blue.)

So now, before throwing a tender young teacher to the wolves who are our darling middle school offspring, the teacher can enter a sort of educational flight simulator full of desks and digital students, just as if standing at the head of a classroom. Every one of those avatar students is “alive” in that a real person’s body motions and speech are being reflected in real time on the screen. Each avatar has a name, personality and a back story. And they react based on the teacher’s actions.

Of course, the avatar isn’t really a student. It’s controlled by a trained interactor, and it’s a highly controlled environment: a student teacher’s lesson plan has to be submitted in advance. This results in intense immersion experiences for the teachers. In fact, it’s so intense, no student teacher is allowed to be in the virtual classroom for more than 10 minutes. I’m not entirely clear on what happens if they go over 10 minutes but it may account for the slight burnt smell I noticed hanging over the lab.

TeachLivE is now being used all over the country to train new and experienced teachers. Go to Youtube. You’ll see.

Worlds Collide

A Teacher and a Teen with Autism walk into a virtual classroom….

CJ’s teacher has been hard at work on her master’s degree at UCF. This means she’s smart, and she knows people. She and one of the TeachLivE creators (Educators and Engineers again, though I don’t know if it was in a bar) got the idea to bring her special needs class into the virtual classroom…you know…just to see how they would react to the avatars. Some of her kids are more social and attend mainstream classes. Some fall in the middle. And one was completely non-verbal. But no matter where on the line, all her students struggle to engage or show social interest. So we already know how they react to people.

Except that these “people” aren’t really people. And these kids aren’t just any kids. The Engineer and the Educator wondered what would happen.

The result was a show stopper. Each student entered and one by one took a glance at the screen, stopped, focused and LOOKED. Heads up, shoulders back, eyes front, gaze steady. And one by one, the educators in the room came to a halt, spellbound. The room fell silent. Except for the kids…who started talking.

Every single one of the kids engaged unprompted with the avatars. They took turns. They initiated. They asked questions. They waited for answers. And then they answered back. It may not have been linear conversation as you and I know it, but it was a sustained back and forth that made rough sense, and most of all, the kids were interested in the interaction.

The non-verbal student typed on his iPad that he wanted to talk to one of the avatars, and he asked for the specific avatar by name. He had only seen that name on a seating chart on the screen because no one had spoken to that avatar yet, but he was interested enough to pick him out and ask for him. And CJ made sustained eye contact and engaged in continued conversation with the avatars for over 8 minutes. EIGHT MINUTES. Fifteen years of therapy had gotten us to a bearable sixty seconds. Ten minutes in this virtual world and we were light years away from anywhere we’d ever been before.

He didn’t want to leave. Nobody did. But they had suddenly found themselves in the middle of a completely unanticipated new experiment, and then someone managed to remember the 10 minute rule. By the time the kids were escorted out, everyone who worked in the lab was elated and in tears. And dumbfounded.

No one expected this.

A moment of sustained eye contact may not seem remarkable to most, but to the parent of a child with autism, it’s one of several Holy Grails. Having a conversation of more than two or three sentences that isn’t essentially forced upon your child out of necessity is something many of us gave up hoping for or expecting a decade ago. And your child suddenly finding the human race anything more than a mine field to be picked through….

Needless to say, it’s been a game changer.

First of all…why? Why is it different for these kids interacting with digital people instead of flesh and blood? What is there about the avatars that eases the fractured process of looking people in the eye? Are there subtle social cues or facial movements that are missing from the avatars that make it easier for a person with autism to process their visual information?

Now….what to do with it? There are a thousand questions now that weren’t there before. An entirely new path of research has suddenly opened.

CJ’s teacher is now a Ph.D. candidate at UCF and she works in the lab. The combination of TeachLive and Autism applied is now the focus of her dissertation. She is using CJ as a subject. He has been in the lab 3 times now, and he’s even talked to the avatars over the internet using FaceTime. He loves these sessions. He loves the avatars. He does not want to leave. He gets jealous when he realizes someone else is talking to them and he is not in there.

CJ talks with Maria in the TeachLivE lab

He is developing relationships with the avatars that are sustained from session to session. He even has a favorite. Maria. Ah, Maria. Maria is quiet. She is very smart, but she doesn’t offer answers. She never volunteers for anything. Interestingly, most student teachers never speak to Maria when they run the classroom. She’s the typical quiet student that would get overlooked in a busy classroom. CJ specifically asks to speak to her.

In his last session, he offered Maria information, he asked her questions, and talked about previous conversations.

And then he asked her out on a date.

!!!

Why is this happening? We have no idea yet. Personally, I can only think that it is safer. It has always been obvious that there is so much more going on in his head than he can get out. For some reason, when he’s with the avatars, he feels either safe enough or physically comfortable enough to try out some interactions.

Temple Grandin said that a person with autism finds it actually painful to look at someone’s face. The only thing that I can think is that the clues I get while engaging with someone…clues about their inference and emotions…are just too over whelming for someone with autism. Everything comes at him at once, and he can’t filter out what’s important and what’s not. I sometimes try to just imagine what that does to CJ.

That doesn’t appear to be happening in the TeachLive classroom.

Brave New World

And now…now things seem to be changing outside the lab as well. CJ is having more and more unprompted conversations. Real conversations with people. A couple of people have come up to me recently to tell me about an almost normal conversation that they had with him. These are people who know him and know what the difference is and know something’s different. They want to know what is going on.

I have no idea what to tell them.

After his last trip to TeachLivE, CJ invited a typical student (a girl!) to dinner at our house. Can I say that again?

CJ…invited…a girl…to dinner at our house.

It gets better. He was so insistent that she come that she and her family finally told me about it. I confirmed the invitation. And she came! He was so excited before she arrived, and he even sat at the table and (sort, of) engaged in conversation with her.

The only bad part of this is that now he wants to call her…ALL THE TIME! (I do NOT let him do that! You’re welcome!) Just pointing out that this is a problem I never, ever thought I’d have.

His 11 year old sister had some friends over on the last day of school. CJ called one of the boys over to the door of his room (no one is actually allowed IN his room, so standing in the doorway means it’s serious). He then proceeded to quiz the kid about his intentions toward his sister. HE was the one drawing an stymied 11 year old into conversation.

CJ: So. How’s school going? How’s school?

Boy: Uh…okay.

CJ: So, she’s funny. She’s really funny. My sister? She’s cute?

Boy: Uh…yeah?

By this point, I am standing in the hall, texting CJ’s teacher like a mad woman, trying and failing to get video of the moment.

CJ: So. How was your birthday? Did you have a good birthday?

Boy (whose birthday was months ago): Uh…okay…

CJ: So she’s funny? She’s funny? You think she’s funny? My sister, she’s cute?

Wretched Boy: Uh, yeah.

CJ: Ah HAH!

This is a first. As Elizabeth comes and releases her poor friend from this doorway insanity, I am shaking. I have never seen CJ actively engaging with someone else and being the one to draw the other out in conversation! It’s a complete role reversal, and I have no idea what it means.

What IS going on? I have no idea, but it sure looks good to me. Can I prove that TeachLivE has done this? No. I don’t work for UCF. I’m not in any way affiliated with TeachLivE and I’m not an expert on any of this. I’m just a parent with a point of view who happened to be there at Ground Zero for something nobody understands. Not yet. The research is only beginning but my husband and I are convinced.

It’s not hurting CJ’s love life either!

Category: Amazed & Awed, Dazed & Confused /

Number 9

May 14, 2014 / Kathleen Williams / 29 comments

Blake Bortles and Oviedo Challenger buddy CJ Williams

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

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

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

One of them is VERY special to us.

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

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

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

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

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

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

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

Blake Bortles and Oviedo Challenger buddy CJ Williams

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

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

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

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

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

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

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

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

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

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

No.

We offered to tell anyone that might help.

No.

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

No.

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

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

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

Blake Bortles, Lindsey Duke and Oviedo Challenger buddy CJ Williams

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

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

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

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

Category: Amazed & Awed /

Long Live The King!

March 16, 2014 / Kathleen Williams / 3 comments

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

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

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

Tonight…was the Best Buddies Prom.

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

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

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

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

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

It seemed premature.

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

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

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

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

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

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

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

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

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

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

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

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

No. There is one King. ONE KING.

CJ IS THE PROM KING!!!!!

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

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

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

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

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

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

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

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

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

And he has the crown to prove it!

Long live King CJ!

Category: Amazed & Awed /

Lockdown

January 31, 2014 / Kathleen Williams / 2 comments

Yes, Justine. There really are locks.

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.

Why??

Well…

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.

Not.

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.

No. Just…no.

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.

Yet….

Category: Bound & Determined /

No Extra Charge

December 4, 2013 / Kathleen Williams / No comments

Church.

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.”

Most leave with an extra smile.

Category: Laugh...or Else /

Holiday Overload

November 19, 2013 / Kathleen Williams / No comments

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.

Category: Bound & Determined /

The Big Top

November 7, 2013 / Kathleen Williams / One comment

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.

Send in the clowns.

Category: Frustrated & Irritated, Laugh...or Else /

Haunted Homecoming

October 16, 2013 / Kathleen Williams / No comments

We went to the Homecoming game last weekend. My husband, my daughter and I sat in the stands with the usual crowd of parents, alumni and students. CJ, however, was on the field in his trainer’s shirt. Because he has connections. He is IN. On the team. The team has given him multiple jerseys now, but he doesn’t like the feeling of the new tighter fitting ones, so that night, he was a trainer. He’s so cool, he gets to choose what position he want to be each game. I wonder what will happen when he decides to be the coach.

Sitting there in the stands, surrounded by cheering and the band and food and the rooting loudly for the team, it was naturally the perfect time to think deep thoughts and get all emotional. So I did. Then I wished I hadn’t.

At halftime, they have the Homecoming ceremony. It was so nice. The girls all looked beautiful. The boys were handsome. The families of several in the court were sitting close by us in the stands and we got to experience their enthusiasm as they cheered for “their” candidate. The King and Queen were crowned. The new King is on the football and baseball teams. He’s a boy who goes to our church and is a favorite of CJ’s, so CJ was right there at the seat of royal splendor. When I thought about it, I realized that CJ was in a social position that half the kids at that school would have sold their iPads, iPhones and first cars to have had. In a strange way, autism has given CJ the keys to some serious high school fantasy.

I sat across the field and watched as CJ spent a good part of the 3rd quarter touching the King’s crown and making comments we couldn’t hear from where we sat. So close, and yet a million miles away. And I almost cried. I took lots of deep breaths. I tried to avert my eyes. At first, I tried to comfort myself like I always do. I tried thinking how amazing CJ’s experience has been. I tried thinking of all of the wonderful things he has gotten to do that so many other kids do not…something so very clear tonight. I watched various alumni come up to him again and again to give him a high five, and I was thinking how amazingly wide his world is for someone caught in the narrowness of autism.

And then I got hit broadside with a whole load of “supposed to” and “I wish” and my heart suddenly turned on me. I was thinking, again and for the hundredth time, that he was supposed to be a senior this year. That he was supposed to be “a senior,” with everything that word implies…girls and cars and acne and locker rooms and SAT’s and college interviews and concerts and parties. How do I explain, even to myself, that he will be here in high school for 4 more years? How do I explain what that is going to look like? How do I explain leaving the structure of the regular school track and entering this weird educational limbo that isn’t a next step to anywhere?

And then I was wishing with every fiber in my being that we NEVER, EVER had needed or asked for special treatment or exceptions of any kind. I wished with all my heart that he never had any need for ANY special treatment. I was wishing for that wonderful gift of being typical. Of being average.

And I was thinking that wishing for that would probably be wiping away everything I was looking at across the field. There was no guarantee that CJ would have been on the court or even popular if he was “typical”. He might have played football, but he probably would have been one of many faces in the crowd, and it’s unlikely he would have been friends with King and alumni alike.

And then I realized I was actually sitting there thinking that I wished that he was an ordinary kid who tried out for football and was cut from the team. That he tried out and didn’t make the team. And I wished I could swap the mixture of pride and ache I always feel watching CJ’s popularity for that simple ordinary pain of not making the team. I never thought in a million years that I would wish that. On him. On us. Who on earth would wish that their kid DIDN’T make the team? It didn’t make any sense….

Except I imagine that it would hurt so much less.

I have a 10 year old daughter. She is beautiful, smart and well-liked. Will she be on homecoming court one day? I guess she could be. There were 3 senior girls there tonight. I am not sure what the size of this year’s class is, but it is at least several hundred. Would my daughter be one of the 3 in her senior year? Possibly. It would be nice if she got to have that experience. Would I be sad if she didn’t ? I doubt it. Her odds are the odds of the ordinary. The typical. We all ran those odds, growing up, winning some and losing some. We know what those odds look like. A few of us get the inside track in high school. The rest of us remain socially unremarkable. Would I be on the edge of tears if my daughter wasn’t one of The Chosen? No. I would not.

And yet, there I was, mourning that fact that CJ, in his own way, was.

My husband was there. He is rarely with us at events like these as he works two jobs. I looked at him and told him I was sad. He knew immediately. He understood. And he pointed out how happy CJ was. He mentioned that every person he had met that night…teachers, administrators, coaches, students…all said that CJ was “the most popular kid at school.” I know it is all true. I just sometimes wish it wasn’t because of the reasons why it is.

I am reminded repeatedly by friends and family that I need to allow CJ to bless others. That CJ makes people better. That I need to allow people to be who they are and to do what they need to do for themselves. That CJ changes people. That knowing CJ changes your life. That knowing CJ makes everyone more aware and more patient and more understanding. Being around CJ makes you happy. CJ makes you laugh when you don’t want to. CJ can make you look at the whole world differently.

All of this is true. I was sitting there that night with the evidence of all this right in front of me, watching CJ touch the crown of the King over and over and wondering why I couldn’t feel what I was “supposed to” feel.

I have watched a lot of football games, and I have asked myself again and again: Do these young athletes even begin to understand? Do THEY get what they have? Do they have any idea what they represent? The high school players represent all the boys who played Pop Warner and backyard football. The college players represent all the boys who played high school. And for the mothers of special needs sons who will never try out for the team, they represent that ghost child…that phantom “might have been” son who will never have the chance to try out and make it, or to fail…to try and to not make the team, and take up track or soccer instead.

No, of course they don’t get it. Nor should they. One of the great things about being young is that your ghosts haven’t arrived yet.

This year, I thought I could go to Homecoming and skip the haunting. This year, I thought I could look at high school football players in their jerseys and not cry.

Maybe next year.

Category: Just Plain Sad /

Define “Selective”

September 20, 2013 / Kathleen Williams / No comments

I just registered CJ with the Selective Service.

Let’s take a minute to think about that.

The law requires all male citizens when they turn 18 to register with the SS. Granted, the law says “all,” but don’t you kind of assume that “all” wouldn’t include anyone with legal paperwork in hand that says he won’t be assuming the duties and responsibilities of being an adult due to disability?

Apparently not. I wouldn’t have given it any thought, except for the part on the Guardian Advocate paperwork that said that we had the authority to register him for Selective Service. THAT set off an alarm bell in my head. Huh?? Why on earth would I do that? Wait. What? Register who?

We have gotten several cards in the mail from the Marines, as well as from several colleges all trying to recruit him. My husband keeps threatening to fill out and send back the cards to the Marines and see if we could work something out. (Insert wink, wink here.)

So I did it like I do so many other apparently absurd things when it comes to CJ. The SS expects it. It is a rule. Heck, it’s a federal law. Plus, it just plain takes too long to explain to some bored government employee on the phone or apply to get the exemption.

The information was basic. I didn’t realize that you didn’t really give them any personal information. I did it on line. And I learned a few things.

www.sss.gov states: “Disabled men who live at home must register with Selective Service if they can reasonably leave their homes and move about independently. A friend or relative may help a disabled man fill out the registration form if he can’t do it himself.

“Men with disabilities that would disqualify them from military service still must register with Selective Service. Selective Service does not presently have authority to classify men, so even men with obvious handicaps must register now, and if needed, classifications would be determined later.”

Let’s see….

1. Reasonably leave home and move about independently. Check.

2. Friend or relative to fill out paperwork. Check.

3. Obvious “handicap.” Check.

Classification to be determined later. I wonder how much later. Maybe after 8 weeks of bootcamp, a long overseas ride in a cargo plane and some time in a trench? This is starting to sound like a “based on a true story” TV movie waiting to happen. Tom Hanks would be involved somehow.

Go for it! CJ with a gun….make that an military-issued automatic weapon. Admit it. You have never felt so safe.

Category: Laugh...or Else /

Autism Fact or Fiction?

September 7, 2013 / Kathleen Williams / No comments

When CJ goes out in public, his behavior makes it apparent pretty quickly that he’s dealing from a different deck than you or I would, particularly in social situations. Autism brings its own pack of cards to the table, and no one has any choice but to deal…including CJ.

Like every family, we need food and toilet paper and sunscreen and laundry soap and school supplies and hardware and clothes and the latest Air Bud DVD’s. However, unlike most families, any trip we make into the outside world always offers the possibility of becoming a public curiosity, if not a public spectacle. Some people ignore us. Some people deliberately, conspicuously ignore us. Some make lots of room. Some smile and walk on. And some stare.

One day when I was in a flippant mood, I asked a cop where the law stood on autism and its potential to create socially weird situations. Her reply was that no one can do anything about strange, as it’s not illegal. I found that a bit comforting, as I am sometimes strange myself.

As CJ has matured into an adult, I think we may be becoming more peculiar to the unaware eye. Most people, by now, are able to see a child and see some of the behaviors that autism can cause, and can put two and two together. I don’t think very many people have even considered the idea of an adult with autism. When CJ and I walk through a store together, it can take fellow shoppers longer to put that two and two together, because the back support of dozens of magazine articles read and news segments watched which cover adults with autism just isn’t there…yet. Meanwhile, a whole bag of other explanations can occur to people which can make them intensely uneasy.

And I will tell you, up front, that as a mom in this situation, I have learned to pretty much just ignore it all. The social worry will eat you alive if you don’t shut it down. As long as CJ isn’t misbehaving within the bounds of reasonable social tolerance, I can’t let myself care about all the small individual social crises we may be causing as we push our cart through Target.

Unless…

Every so often, someone will surprise me and just ask me questions about CJ and autism. While it can be annoying while I’m trying to hunt and gather for my tribe, I appreciate that most of these questions are well-meant and innocent. And I really do try to answer the best I can. I’ve become something of an expert at sorting out the sincere from the mere social curiosity. Some people don’t really want answers…they just want to gloss over the awkwardness and move on without feeling bad. Some questions just make me laugh or roll my eyes. Fact and fiction can get blurred in a hurry when all you bring to the situation is “that Temple Grandin movie” and a vague memory of Tom Cruise and Dustin Hoffman coming down the escalator in “Rain Man.”

I think that many people assume that autism is CJ and CJ is his autism. They see autism as something that completely separates the person from anything ordinary and changes everything so radically, there’s not much left for the average person to relate to.

Not so.

Fact—CJ is 18 years old. Autism or no, here we are.

Fact—CJ loves sports. LOVES them. Why? I don’t know. He always has. Why does any teenager love sports? He was never interested in cars, trucks or Legos. He would rather bounce a basketball or toss the football around, or watch someone else do it on TV. Meanwhile, my friend has a typical son who is obsessed with Legos. LOVES them. Why? He likes them. And no one questions him.

Fact—CJ likes the color green. Why? I don’t know this either. I like red. Given a choice, I will always choose red. In fact, it’s so pervasive, it’s a family joke. CJ doesn’t prefer green just because he has autism. He likes green because he likes green.

Fact—CJ is funny, personable and well-liked by his peers. Why? Because he has a sense of humor, enjoys some interactions with people, and usually has a great attitude. I would like to say that it is because he inherited from me, but who knows?

No…yeah…I’m going to claim that one. He inherited that from me.

Fact—CJ is autistic. It is a diagnosis. It is a condition. It is NOT who he is.

Fiction—all autistic people have a special skill. Something that somehow counterbalances the “cost” of the autism. Like a gift for numbers or dates or musical talent. NOT true. There are only a small percentage of autistic people who are savants. Most people with autism are just that…ordinary people with autism.

Fiction—Autistic people are, by definition of the condition, mentally challenged (or my all-time favorite, “retarded”. Yep. I went there with the “r” word). CJ has multiple tests measuring his IQ within normal range. Just because he doesn’t use his brain power the same way you or I do, don’t underestimate him.

For example, his sense of time is both unique and remarkable. First of all, don’t tell him you are going to do something unless you mean you will do it NOW or soon! The future is any point from from now forward until he’s tired of waiting. “Yesterday” is any time from a moment ago until his first dim memory of anything that might make his point right now.

Also, he remembers EVERYTHING! Memories may not be in a logical pattern for our convenience, but they are in there, fresh as the day they happened. He will occasionally bring up things that happened years ago. I am talking 10-14 years ago. Usually out of context…or so I think at first. When I finally figure out what on earth he is talking about, I realize what he’s recalling was generally not one of my finer moments. And I realize what I have is a teenager with a steel trap memory throwing my past parental missteps back in my face.

How just plain ordinary is that?

Fiction—People with autism who are non-verbal can’t understand what is going on around them. NOT true. They are very aware and will often react to their surroundings and what is going on and being said. So when you approach that mom pushing the cart in Target with a question, keep in mind that you have a larger audience than you may think. You can insult, hurt or frustrate a person with autism, just like you could any person overhearing what you say. You can also compliment, empower, and lift the self esteem of both that mother and her child by the words you choose and the way you ask your questions.

CJ is first and foremost a person with his own interests, likes and dislikes. He also has a condition called autism that causes both him and us difficulties in his day-to-day life and classifies him as “disabled”. He is my son, a brother, grandson and friend to many who see way beyond the label. Autism has not destroyed or damaged his personality, although it may make it harder for him to express it at times. It’s all still in there…a bright light filtered through an autistic sieve, bursting out in all kinds of colors and angles and occasional glares.

See you at Target.

Category: Bound & Determined /

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