Friday, May 24, 2013

Bathroom Wall

I meet Jack's teacher and aide every day at pick-up from school. We exchange any information on his day and discuss if necessary. It's actually a great relationship.

You can imagine the horror I felt when Jack's teacher came over to me and said this:

"We had our first bullying incident today in the bathroom"

My heart sank. Was Jack the bully or the victim? What a vulnerable place. We're potty trained and all, but Jack still has modesty issues. And besides, a bully? He's 6!

"Oh?" is what I managed to answer, way to think on my feet.

So this is the story.

This was on Monday. On the previous Friday, there had been an incident in the bathroom where somehow Jack believed, or was led to believe, that there was a spider on the loose. Jack is terrified of spiders right now... Loves Zombies, but hates spiders, I digress. So, Jack believed for some reason that there was a spider on his junk. He ran to the door where his aide hangs out when he's in the john and announced it loudly, realistically, and hysterically (not funny, but rather in hysterics)... and with his pants around his ankles. This was all dealt with and he worried about it for a good deal of the rest of the day, but it had been forgotten by the time I picked him up.

So back to Monday. There were two boys in the bathroom with him and one of the 2nd graders (yes, they were older) happened to witness the spider on the junk incident on Monday. So he said something to his buddy along the lines of "watch this kid freak out if I tell him there's a spider in here. He'll get all worked up and cry. I'm gonna' put a spider on his head. Watch. He'll start crying"

It didn't work the way the bully wanted it to (unless this second grader believed the realpolitik of the ends justifying the means). But it did get Jack all worked up and asking questions like "where did you get a spider? Why do you have a spider? Why do you want to put a spider on my head? Can I see it first? and since the kid couldn't really answer it, it got Jack more and more frustrated and... he started crying. He ran out of the bathroom to his aide who was waiting outside.

It breaks my heart that there is a kid out there that wants to make a little kid cry for humor's sake. It breaks my heart that there is a kid out there that wants to make fun of a disabled child's disabilities for humor's sake. It breaks my heart that there is a kid out there that wants to entertain his friends at my son's expense.

I fear this will happen again. There's a tough road in front of Jack. Kids can be cruel (hell, adults can be bullies too, just read some of the comments left on my more controversial blogs!). I want to say "this will never happen again". I want to take it all away.

But in the end, I can't. Besides, Jack didn't seem to take it too personally anyway. Little point in bullying a kid that doesn't give a shit, right?

What was the school going to do? How was this kid going to learn his lesson? And why the hell are you writing this story with such an easy, relaxed, entertaining voice, Jaye (that's me). You should be pissed as hell!?!?

If you were paying attention to the story, you might have remembered that the aide was outside the bathroom. Jack's version of the story would not be very reliable (sorry, it just wouldn't). So how did his teacher tell me what happened with such great detail.

The other kid ratted out his buddy.

He said things like "stop it", "this isn't funny", "stop picking on him" and, most importantly, "I'm gonna' tell"

The bully (who apparently has a bit of a history at the school) was sent to the principal's office and dealt with accordingly. The second boy was given a reward (ice cream, I think), since our school has a "Bully-free" zone and the children get rewarded for stopping bullying.

Here is the moral of the story. Here's what I want you, Jack, to read in a year or so (and yes, you can send Daddy to his room for using bad language):

There are a lot of shitty people in the world. Some of them may try to take advantage of you.

But there are a lot of great people in the world as well. Some of them will stand up for you.

And get ice cream for it.

Tuesday, May 21, 2013


Growing up (and still today) my father would never use the word crazy to describe someone or their actions. He told me once that as a physician it means something different coming from him.

It was near the start of First Grade (at "back to school night") during what we call "The Great Regression" that I finally understood.

Jack wasn't doing well in school. I had to go meet a bunch of new parents that I may or may not have to explain things to, so I was already in a pretty defensive mood.

The teacher had put together a slide show of the kids in the first two weeks of first grade (which was lovely. It really was). But there was only one picture of Jack.

The mother that was sitting next to me and asked "are you Jack's dad"? We're the only red-head in the class, so it was a pretty good assumption. I told her yes.

"Well, Johnnie just goes on and on about Jack. He says he is the craziest kid. He can't wait to see what he does next. He just says Jack is simply nuts. He just loves that crazy kid."

It was supposed to be a compliment. I know it was. But, the reason Jack wasn't in any of the pictures was because his behavior was getting him removed from the class daily.

I said something like "yeah, that's Jack" or something dismissive like that.

We were tasked with leaving a note for our children to read in the morning.

I quietly fought back the tears and wrote my note. Finally understanding why my father never used the word crazy.

*** that was a long time ago, but we had a party this weekend and the neighborhood kids were playing a tag-like game in the bounce house. And Jack was "it"... he's always "it". And when I asked him why he was "it" again... he smiled big and shook his head and declared "Because they say I'm crazy!!!" and he happily bounced away.

And I was in a shitty mood for the next 2 days.

*** a little post script for the blog post only***

Want to know what I wrote to him? We've had it on our refrigerator since that September Morn...

"Hey Jack!
I know how hard it is for you to be here. Your mom and I are very proud and ask you to just keep trying your best. Listen to Ms Sally (his aide). She loves you very much and truly cares about you at school. Please keep trying.
Life is struggle, conflict is essential, triumph is eternal.

I still believe in you.

I love you


Monday, May 20, 2013


This is a copy of what I wrote on the Find My Eyes Facebook page.

Mikaela Lynch... I have never met you. I have never had the chance to hear your story. I never got the opportunity to listen, yet I feel I know you so well. 

When I was a younger man, I witnessed two little girls drown at Lake Tahoe. One was revived and, unfortunately one was not. It was very crowded and the girls were probably about 100 feet out in the water. Someone shouted and literally dozens, dozens, of people ran and swan to the floating bodies. The jet skis got to them first. And I watched from the water as two lifeless, limp bodies were pulled to the hood of a jet ski and shuttled ashore. There was an incredible response and several people attempted CPR while the ambulance pulled up on the beach and whisked them away.

The entire affair lasted maybe 7 minutes.

But the image has lasted a lifetime.

When I heard of missing Mikaela Lynch, I cried. It was one of our own... in a city known for its lakes and creeks.

Find My Eyes has long been advocates of water safety for autistic children. More autistic children drown every year than are killed in auto accidents and that is an amazingly terrifying statistic.

I do not have words for the parents and family of Mikaela. They're not mine to give. The right words do not exist. Maybe only a tearful hug and an "I'm sorry this has happened". Everything else is too personal.

But I will offer this to Mikaela's family... from someone who hurts, understands, and cares.

There are no mirrors in Heaven because you are beautiful in everyone's eyes. There are no demands. Inclusion is empowered to you. A place where you do not need to wear clothes, you do not need to talk, you do not need to behave, you do not need to struggle. A place where you are angelic, and, at long last, understood.

Mikaela, your story on Earth was unfortunately too familiar. But your beauty has transcended all of us to tears and unrequited empathy. You have touched millions... And very few people can say that.

Rest in Peace sweet angel.

Friday, May 3, 2013

The Waiting

Those of us that receive Occupational Therapy clinic-based services know what a fertile crescent of stories the waiting room is. I'm going to share three stories with you here. I'll save the funny one for last (Full disclosure: that one contains some bad language)

Story #1 - The first time someone used the word "retard"

Jack and I were waiting in the crowded lobby for our therapist "Johnny" (yes, we have a male OT) to collect Jack for his session. Parents and children were shuffling in and out during the transition time. Our OT clinic is amazing. Has an incredible reputation and sees the full "spectrum" of disabilities. Jack was being his usual self, having trouble sitting still, talking about Minecraft (or whatever it was at the time) to nobody in particular, but "behaving" pretty well considering how anxious he was to go "play" in OT.

Johnny collected Jack and I stayed in the lobby. The crowd thinned out and I was left with one woman and her daughter (I'd guess she was about 2). The family was new to the clinic and the little girl, "Sally", had Down syndrome.

The mother explained that to me. Then she asked one of the oddest, yet most obvious, questions. "What is your son in for?"

"My son is autistic"

"Oh. Is he a retard?"

And it hung there in the air for a moment. My mind instantly raced through all the clever and snappy comebacks I had been cataloging in my mind for this moment. Here's what I came up with...


An overwhelming sadness had instantly come over me. I was staring at a mother with little education and seemingly little support who was about to embark on her own journey of raising a child with special needs. I pitied her... yep, pitied. Her road was not going to be easy, and she clearly had little knowledge of the tools she would need to complete that journey.

I've never seen her there since. I hope that she has learned how harmful and hurtful her words were. If she were to read this blog, I would want her to know that I forgive her ignorance. If you ever want to talk, I'll buy you a cup of coffee and do what clearly hasn't been done in her past... listen.


Story #2 - The first time I totally lost my cool and yelled at another parent

I'll start this story with I am completely embarrassed by my behavior. This story does not end with "I told some bitch off and look at how just and righteous I am".

We're well into our session and I find myself alone in the waiting room with another mother. We had made some small-talk.

It is important to know that this story takes place during what we call in my house "The Great Regression", a very difficult time near the start of first grade for Jack. This entire conversation has a lovely soundtrack of the faint screams of a child protesting somewhere off in the distance (mine).

This woman proceeds to tell me about her 8 year-old son who just couldn't seem to get his behavior under wraps. She tells me stories of how foolish the State and School district is because they just won't give him an Asperger Syndrome diagnosis. She explains on and on about how brilliant he is. He reads at a college level (her words) and can solve mathematical equations worthy of MIT (again, her words). The school just didn't know what to do with him because he was refusing to do his work because it was so "beneath" him. He kept telling the teachers and her that. He must be bored. This woman carried on about how hard her life was and how "ignorant" these "experts" were. I, honestly, had other shit on my mind and started to tune her out after about 10 minutes. She had some issues herself picking up the social cues I was giving her by NOT RESPONDING. At one point I even started reviewing the contract I was holding just to hint to her that I was not interested. Didn't work.

And the soundtrack of screams carried on.

So, her child comes out, with a befuddled OT in tow, and says "Mom, I'm above this stuff. She's asking me to write my name and a sentence about a giraffe. Please don't make me come here anymore." And the turns to me and says "See what I mean... they just don't know what they're talking about."

I caught a glimpse of the "work" the OT was holding and, while I have no idea what it really was, noticed it looked like the kind of scientific calculations you would see on a chalkboard in a time travel movie... parabolas and graphics and the such.

The kid was indeed brilliant. Furthermore, the kid walked right up to his mother, looked her right in the eye, and told him exactly what was going on. Told her his feelings, told her his chosen consequences, told her his fears. As I was about to tell her how great that was, how I would pay any amount of money for my child to communicate that clearly with me, how that's not really a sign of Asperger Syndrome and your child is probably just really gifted, Jack bolted into the lobby... screaming.

I managed to gather him up and restrain him...

And this woman kept talking...

"I mean, how can people call themselves experts if they can't diagnose this clear case of Asperger's. You can clearly see it, can't you? What am I--"

I slammed my hand down on the children's table that was next to us, and over the noise of the screaming child I was restraining yelled "LADY! I have real problems"

She gathered her things and quickly left. I calmed Jack down enough to get my OT session notes and head to the car.

I do not know what happened with that woman and her son. Never saw them again. I do know how wrong it was for me to, at long last, interject with an insult. I don't know her life. I have not walked a mile in her Prada heels. She was trying to tell me her story, and I was too selfish to listen. I'm sure they have figured it out by now... maybe jump your kid a couple of grades. I'm certain she's learned by now that Asperger Syndrome is not code for brilliant (like Hollywood would have you believe).

I'm sorry I yelled at you, ma'am. I should have listened instead.

Sometimes, however, some people need to learn when to just stop talking.

I hope you and your boy are well... sincerely.

Story #3 - A funny one to leave on

During "The Great Regression", our family was inundated with the word "fuck", and all of it's lovely forms. Here's a great story I wrote about that here (still my most popular post to date, might I add). This was near the end of the cavalcade of profanity from my boy, long after we had learned that ignoring it was the best way to make it go away (which worked, btw. Jack's House: "Fuck Free for 98 days").

So we are waiting for our OT session to start in an unusually busy lobby. Jack is being suspiciously quiet and reserved. Sitting nicely, with calm hands, and not saying a word... definitely up to something.

After a good 5 minutes of waiting, Jack breaks his silence with,

"Where the fuck is Johnny?"

As I instantly hung my head in shame at his innocent imperative as to the whereabouts of his therapist, I took solace in knowing that I was in a room full of special needs parents. They are going to know to ignore it. They got my back on this one, right?


The room explodes into uproarious laughter. A din that, unfortunately, set off a few meltdowns of it's own. Even drew a "yeah, where the fuck is he?" from a fellow Dad.

Johnny came out to the gather Jack. He was greeted by the sound of uproarious laughter, two meltdowns, a parent arguing over their bill, and someone licking the vending machine...

Or, as they call it in the OT waiting room...


Wednesday, May 1, 2013

It's All Over Now, Baby Blue

April was spent at Find My Eyes hosting guest blogs for Autism Awareness Month. I set out a goal to get new voices, or under represented voices, heard in the autism community. I feel it was a success.

It was fun to play editor/moderator for a month, but, more importantly, it was quite valuable.

Managing a project like this actually took a lot of work and time.

So, why did I do it?

My goal was to raise autism awareness by hearing new voices. All of us bloggers realistically write about the same old stuff. We've all written (or will write) the IEP story, the first diagnosis story, to medicate or not medicate story, the public meltdown story, etc. What makes them different? What makes you have a favorite blogger? It's at least one of three things 1) Voice  2) Perspective  3) Circumstance  

It makes us loyal readers. It's who we look to for either entertainment or information.

It's who we want to share with others.

It's who we look to "raise awareness".

I would love to say I have a gigantic following that I am helping educate and raise awareness among (and I hope I have done so), but the truth is, I'm only trying to raise awareness for one person.

And that is my son.

Nearly a year ago, I wrote a blog post called "Tomorrow is a Long Time" about fearing the moment that I would have to tell Jack he was autistic. Take a moment to read it, if you can. That is how I felt last year.

In the very near future, My wife and I will sit Jack down and tell him.

I will tell him and show him that 33 people (some of which he's never met), care about him. 33 people took the time out of their days to write. They took the time to help.

I write this blog to inform/entertain/advocate on Jack's behalf.

But I do not have the power to change the world. I do not have the skills to change the world.

One of Julie's bosses said this about Jack: "That kid. He's fascinating. Whenever he's around I just can't take my eyes of him. I wish I had the power to command a room like that."

In the near future, I hope to make Jack a part of this blog. I truly can not wait to get his perspective on autism. He is an amazing, endearing, and commanding kid. Those skills will serve him well.

And if he does not want to be a part of this blog, I will bid you all adieu.

The next logical step for me is advocacy for my son, and Find My Eyes is going to head in that direction.

Honestly, there is little more I can do to raise awareness, that becomes your job, Jack.

Self advocacy is your birth right, not mine.

I have no doubts that you will change the world, my son.

Until you do, I will continue to try my hardest to stand between you and harm's way in all the dark places you must travel.