Wednesday, June 26, 2013

You've Got a Friend In Me

Last night, my family hosted another blogger and her son for dinner. Confessions of an Aspergers Mom is run by a wonderful woman who I have known on-line for some time. My wife is pretty close with her as well. I will write a different blog about how important she is to my family at another time, because I want to talk about her son.

"Red" is 17. Red has Asperger Syndrome. Red struggles with the same things that most High School Seniors do.

And Red is amazing. Red drew some pictures for Julie and I, and showed us some of his editing projects he'd done on-line. As a professional in both comics and film, I was impressed with his skills in both departments.

I wrote a thank-you note to his mom today. Thanks for the visit, thanks for the wine, thanks for the laughs, etc. But most importantly, thanks for bringing Red.

My boy is six. He doesn't understand the importance, the power, the struggles of being autistic yet. But he will.

The most impressive thing I can say about meeting Red is how much I loved who he is. Creative, polite, intelligent, and autistic.

We throw around the term "peer role model" a lot in our business. Unfortunately, that never means other individuals with autism.

Well now it does for us.

Jack I want you to know that there are other kids, other girls, other boys, other young men and women, and other adults like you... and some of them are amazing. When you read this, Jack, I want you to remember Red. I want you to know how interested he was in you... for you. How much he wanted to interact with you, and didn't care at all if you "behaved". How he met you and simply said "I have autism, too".

I cannot thank Confessions of an Aspergers mom enough for visiting. I will continue to pick your brain about what you have done to raise such an exceptional young man. I will continue to lean on you when we need support ourselves. And I will continue to lean on you when I need a good laugh.

But I really want to thank Red. Thank you for showing my boy that he is okay, that he is not alone, and that he is loved.

Last night I met a young man in whom I saw no disability... only triumph.

And that, my friends, is pretty fucking cool.

Jack and "Red" - 6/25/13

Tuesday, June 25, 2013


We spend a lot of time as special needs parents dwelling, doting, lamenting the moments that are "lost" in our children's lives. I wrote a post a few months ago about Jack finally learning to ride a Bicycle (Here) and ended it with "So, what do we say when Autism comes to rob another memory? Not today."

One of the seminal moments of childhood is what I like to call the "why" year. Sit-coms, stand-up comedians, and world renown authors have all made fun them. Even commercials. A seemingly never ending string of questions that can only be ended with a parent or adult finally concluding "Because I said so!"

In typical childhood development, it happens around 3 or 4. A new child exploring his world. A fascination with the very simple principle of cause and effect. To everything there is a season, and a time and purpose under heaven... turn turn turn.

Autism robbed me of that year.

Or perhaps it was just "on hold".

After Summer School yesterday (a summer program where Jack is doing well, excelling, flourishing) his aide and teacher told me that Jack was having a difficult time "predicting". He would read a story and the teacher would ask "what do you think happens next?" Odd. His comprehension is pretty good. His ability to relate to the real world is pretty good. His reading skills are pretty good. His verbal skills are pretty good. But Jack didn't want to guess what would happen next because, in his words, "he didn't want to get it wrong". Simple cause and effect. To everything there is a season and a time and purpose under Heaven.

So we agreed to work on it.

After school, Jack was watching some trailers for movies on his iPad during his break time, and he came across a preview for an old zombie movie (let's say Dawn of the Dead).

Jack: Hey, Dad. There's a zombie movie!
Dad: Great. Are you scared?
Jack: No. I'm very brave. How do you become a zombie?

Dad turns away from the computer screen.

Dad: Well, you get bitten by a zombie.
Jack: Then how did the first zombie get there?
Dad: I don't know.
Jack: Zombies aren't alive are they, so why do they need to eat?
Dad: Only their brain is alive, but they need to eat to keep that going.
Jack: If they are making other people zombies, why did they stop eating that person?
Dad: What do you mean?:
Jack: The zombies are full people. Why did the bad zombies stop eating and let the new guy turn into a zombie?

Dad contemplates

Dad: I don't know. That's a really smart question.
Jack: If only their brain is alive, if they don't eat, will their brain die?
Dad: I guess.
Jack: If only their brain is alive, why do they have blood when someone cuts them?

Dad slowly places Jack's face in his hands. Stares in the child's eyes. Recognizes that childlike exuberance that gives unlimited confidence that Dad lost so very long ago... and sweetly says:

Dad: Because I said so.

Not today, Autism.

Wednesday, June 19, 2013

Make Your Own Kind of Music

Jack has been in Summer School for almost two weeks now.

This year his Summer School is a little different than the past two... He's going for "academics". He was at a "social skills" Summer School previously. So, I need to start this post with some information about Jack's 1st Grade experience. Jack is in a General Ed classroom at our neighborhood public school. He has an aide with him. Jack will be going to 2nd grade next year, General Ed, full-inclusion. Jack has an IEP, but there are no academic restrictions or goals, so he is "judged" (graded) as is every other pupil in his class. If you've followed this blog, you know that what we call "The Great Regression" lasted until about mid-November. Jack literally missed almost the entire three months of instruction being removed from the class due to behaviors... and had a lot of catching up to do.

We ended the year close, on the fence of whether he should repeat or not.

At our annual IEP we sat in a room of involved, wonderful professionals that all wholeheartedly agreed that Jack should move on to 2nd grade, but attend Summer School to catch up, or at least maintain skills.

So we attend the "Special Day Class" Summer School for the entire district. Good news is that it is at our school, so there's no transition to a new campus to worry about. Bad news, it's at our home school, so Jack can't take the bus (like 95% of the kiddos there). We'll live with it.

So, Jack is in a classroom of 1st, 2nd, and 3rd graders (he's the youngest). There are 25 students (although on any given day there's only 15-20 there, attendance seems "optional" in Summer School), 8 aides (including Jack's) and a teacher.

Okay, all that's done. Here's what I want to write about. He's doing amazingly well.

As advocates, "least restrictive environment" and "all inclusion, all the time", are our rallying cries.

But... Jack is finally happy in school. He is a "big fish" in this pond. I asked him why he was doing so well in Summer School and I got the most interesting (yet vague) answer.

"Johnny gets time away more than me"

I assume he means that there are finally peers that are a bigger behavior problem than he is.

We are an ABA family, so we spend a LOT of time analyzing the purpose of behaviors in our boy. Usually "attention seeking" is number one. Maybe "task difficulty" or "task avoidance" deserved more attention.

Inclusion is a touchy subject... touchy meaning it's complicated. Jack has never had a classmate or peer that was mean to him. He even has several that go out of their way to "include" or "be nice" to him.

But he struggles.

But in this environment... He IS the peer model. Inclusion is empowered to him. There are other students that want to emulate Jack... let me say that again... there are other students that want to emulate Jack.

And that breeds a skill we haven't seen in our house recently.


Jack gets to be who he is (within reason, of course), and others like it! And the academics are improving!

So, after another great day at Summer School, I snapped this picture over my shoulder while driving home.

I see Jack every day at school. And, like most of the children on the spectrum that attend there, he's walking around looking lost, frustrated, or pissed off.

And here, without any prompting or advance warning, he's smiling.

I hope that we can parlay these Summer School skills to the 2nd grade class.

I want you to keep being you, "nobody can tell you there's only one song worth singing. Make your own kind of music, sing your own special song, even if nobody else sings along"

I'm proud of you, Boyo.

Tuesday, June 4, 2013

I'll Be Seeing You

Last day of school always comes with lots of emotions. The last two years have been bittersweet for us... and for Jack.

He waited until near the end of Pre-School and the end of Kindergarten to make a friend. A real friend. We told you both times that they would be going with you to the next grade. We told you that you would see them after Summer vacation.

But, for some reason or another, you didn't. Sometimes, Jack, things change. Sometimes people go to different schools. Sometimes people move away.

Us grown-ups have a saying for this. "Shit Happens"

I don't expect you to comprehend "Shit Happens" yet... perhaps you never will.

"Shit Happens" is probably the hardest thing for any human being to accept. Even adults are always looking for a reason, someone to blame, something to scream at... but in the end... simply "Shit Happens".

If, because "Shit Happened", your friend is not in your class next year, I want you to know and believe it is not because you've done anything wrong.

I know how hard it was for you to say good-bye to her today. Your mother and I have done everything we can for her to be in your class next year. I've even prayed (I'll tell you what that means later). But, there are other parents that have asked for their child to not be in class with you next year.

And although that breaks my heart, they are just looking out for what's best for their children, too.

But, Boyo, I don't think she's one of them. She loves you for you. She sees the beauty in you that few do.

And she always will.

Jack, one day you'll realize that I've given you a gift as your father that nobody can ever take away.

I gave you your eyes.

I know how hard it is for you to express yourself. I know telling the world how you truly feel is difficult. I know how you hide your feelings for a fear of being misunderstood.

But a picture doesn't hide that.

And your eyes can not hide how you feel in this picture.

And I know, because I gave them to you.