The Dope Show

 The Dope Show (Album Version (Explicit))

  MARILYN MANSON

  FROM THE ALBUM "MECHANICAL ANIMALS (EXPLICIT VERSION)"

BUY

EXPLICIT

Sometimes it's hard for me to admit that my six year-old son has a psychiatrist. I go to a shrink once in a while. My wife does, too, but we're adults. We choose to.

Jack's psychiatrist is fantastic. We were having a particularly bad stretch at the beginning of 1st grade this year (well documented through these blogs), and needed to open the dialog about pharmaceuticals for the boy.

Jack was diagnosed a little after his 3rd birthday (Nov 2009). We instantly threw him into ABA home therapy, OT, Speech, and pre-school. Things were going well. He was improving, for the most part, every day. We had beat the system. We had beat the disorder. And, as everyone around assured us, "we were going to be fine".

And we had done it all without drugs.

Until things changed. Jack was becoming increasingly aggressive, rage-filled, and, to be frank, violent. He spent little time in the classroom, if any. He spent a lot of time in the principal's office. And, I spent a lot of time there, too. Not a one of us had a clue what to do.

I've always seen pharmaceuticals as an "easy way out". I didn't want to "dope" my kid. The images of McMurphy in the Cuckoo's nest asylum. The Thorazine clinics of sedated patients in our public health system. The hypermedicating craze of the mid 90s. The College kids abusing Adderall story I had seen on 60 Minutes. None of these were for me. They weren't Jack's future either. Most importantly, I didn't want to tell anyone about it. Selfishly, I'd be embarrassed to have my friends and family know I was medicating my child. They were all telling me "everything would be fine", and I didn't want to let them down. So, you can see my concerns, even my disdain, for pharmaceuticals.

But Jack's behavior and aggression were starting to give me few other options. If he couldn't control his aggression, he wouldn't be allowed to continue at school... too much a danger to himself and others.

So, I called my insurance company and got a referral to a pediatric psychiatrist. That's when something amazing, maybe even magical, happened. The second name they gave me was a friend of mine from High School. I didn't go to High School in Los Angeles, so this was pretty amazing. I had a friend that could help. And help she did.

Turns out, I had no idea how pharmaceuticals work for ASD (or ADHD, OCD, PDD-NOS) kids. All of the things I would be "ashamed" of weren't true. It was my own ignorance and judgement that were holding me back.

Jack started Ritalin. Jack has not been pulled from class in the last 8 days (counting today). Jack has not had any aggressive/violent episodes in the last 8 days. Jack has only said "fuck" once at school in the last 8 days (and he mumbled it quietly to himself).

More importantly, Jack has done all of his schoolwork. He has participated in classroom activities. He even will talk to a classmate once in a while.

I believe in the merits of ABA therapy. I believe in the merits of Occupational Therapy. I believe in the merits of pharmaceuticals. But I also believe (as many of my fellow professionals and parents do not) that these things are NOT mutually exclusive. They compliment each other beautifully.

This is my point. Drugs will not work for all of our kids, but don't make those decisions without learning what they are first. I got lucky. Perhaps it was fate that I found Jack's psychiatrist. She's brilliant, kind, empathetic, and professional. My son loves her (he calls her the "talking doctor" since she doesn't give shots), and we love her, too. Thank you for walking us through this.

I didn't want to medicate my son because I was worried what other people would think... and that's a terrible way to live your life.

When I Paint my Masterpiece

  When I Paint My Masterpiece

  BOB DYLAN

  FROM THE ALBUM "BOB DYLAN'S GREATEST HITS, VOL.2"

BUY

I'm not sure if you can tell from my blog or not, but I am a professional writer. The other afternoon, I was working on the computer and reviewing a few feature film pitches I've put together. Jack comes in the room to ask me what I am doing.

On a side note, Jack knows how to make an entrance. He doesn't simply walk into a room and say "hello", he explodes into a room. It always reminds me of "Cosmo Kramer" from Seinfeld. Anyway, Jack explodes into the room and asks what I am doing.

"I'm working on some movie ideas"
"What's that about?"
"Well, Jack, this one is a science fiction movie about a world where-"
"You should write my movie." This really catches my attention.
"A movie about you?" I ask.
"No. Make a movie I want to see."
"And what movie is that?"

So, throwing it out to the world. Here is Jack's idea to Hollywood. I will present it in pitch form, because there would be way too many (sic)s if I quoted him verbatim. It should also be noted I asked him a few follow up questions to fill in the holes in his story.

My son told me to write a movie for him... the anticipation was killing me. What the heck would he want to write about.

Capitol Baby - by Jack Capell - a six year-old child "on the spectrum"

The good people of Iowa (his favorite state???) accidentally elect a baby to be President. So, the baby is forced to lead the Nation, and mayhem ensues.

We worked through a few of the details. Maybe there was a write-in candidate with a similar name. Maybe it should be a Senator instead of the president. There's the problem of minimum ages of elected officials to get around, but as Jack said, wouldn't it just be funny to see a baby being president?

He exploded out of the room.

I sat and thought to myself... it's not the worst idea I've ever heard.

A smile came across my face as I thought, and realized, that somewhere in the twisted network of firing neurons he calls a brain, was the true thing that makes us human, the thing that make us superhuman, the thing that make us (ahem) neurotypical...

Original Thought.

I think the first draft of Capitol Baby will be in his Christmas Stocking... and coming soon to a theater near you.

The Incredible Hulk

   Incredible Hulk

   J B CLARE

   FROM THE ALBUM "TELEVISION AND MOVIE THEMES"

BUY

Jack has recently told us that his favorite superhero is The Hulk. I worked in comic books for many years and have had many a debate with Jack about which superheroes he is allowed to emulate. He can never be Superman, Spiderman, or the Hulk, because they are mutated or alien. Exposing yourself to that many Gamma Rays would more likely give you cancer than super human strength. Batman, Iron Man, Rorshach (one of The Watchmen) are human beings that have overcome adversity to become superhumans. You could be Batman if you worked hard enough (and had enough money as well). But he likes The Hulk.

The Hulk is a conflicted dude. My son is a conflicted dude.

One of the things that Jack is working on with his Occupational Therapist is energy awareness. His "engine" is running red (too fast, rage, overstimulated, etc.) or green (level, calm yet not sedated) or blue (low energy, tired, unfocused).

He was tasked to make a meter for his "engine" and this is what he made:

It's important to mention that he chose to use The Hulk. He could have used smiley faces (which most kids chose) instead.

It got me thinking. The Hulk is a character that is conflicted. Bruce Banner turns into The Hulk when he cannot control his rage or anger (in the later comic book mythos, he has learned to, but let's not start that debate... although I would love to have it with you). So, enraged, he turns into this hulking beast that can destroy anything. A hulking beast that has the urge to simply destroy for the sake of destruction... ever heard "Hulk Smash!"?

So, I get the red section. The green section contains something interesting... friends. The Hulk is social enough to have them. In the sticker Jack chose, he is surrounded by them. Jack sees the "proper energy level" as a social situation. To enjoy others company, and be enjoyed.

The blue section is troubling, or at least sad. He didn't choose a picture of Banner. He chose a picture of The Hulk alone... solemn. Sadness and solitude are the same thing to my boy. Even more interesting is he sees solitude as the opposite of rage.

Jack struggles so much with social norms. It goes with the territory, I guess. However, he sees having friends, conversations, or simple interactions as the level he desires to maintain Who knew an art project could be so revealing about a child's entire psyche?

This was his Halloween costume this year:

Trick or treating with his gothic vampire Betty Ross. The one person who can keep The Hulk mellow, or "in the green".

I get it. I understand why you want to be The Hulk. Because In the end, with the right guidance, you are indeed incredible.

More Than Words

More Than Words

EXTREME

FROM THE ALBUM "EXTREME II - PORNOGRAFFITTI"

BUY

In the interest of full disclosure, this blog will contain profanity.

"Fuck" is a great and versatile word. Seen here:

http://www.youtube.com/watch?v=pWNfUGDpqe4

Fuck is not so great and versatile a word from a six year-old. So that being said, our house has been infused and inundated with the word "fuck". We're not sure where he picked it up, but he's got it. He's learned that it gets a great reaction... especially at school. It has become deeply troubling and embarrassing to us as parents. Now we are those parents. We've got that kid. This started about a week and a half ago, and is fading out (thankfully), because we simply ignore it now. No reaction at home drives the boy crazy. I wish we had tried that at first rather than drawing so much attention to it the first few days thinking punishment, guilt, or misunderstanding would help. 

So here's the anecdote that will make you laugh, warm your heart, and appall you at the same time.

On Thursday morning, the day after Halloween, Jack decided it was a great idea to strike up a conversation with one of his classmates about the amount of candy he received. Back and forth conversations not guided by an adult are rare, but do happen once in a while. "Sally" is a sweet girl that has always taken a liking to Jack. She's one of those "what can I do to help?" six year-old girls that every class has. Thank Heaven for little girls indeed. As an added bonus, she's the only blonde in his class. Daddy approves. Sorry, Baby Love (There are no red-heads in his class like his mama).

I digress. During this wonderful interaction about the candy another little boy walked right into the conversation and hit Sally. Yep. Socked her right in the face (this is a Gen Ed class, full inclusion contains some awesome characters, doesn't it?). Sally started to cry and the aide instantly dealt with the little boy. So, as Sally is crying, Jack, my boy, asked her why she was crying. 

"Johnny hit me"

"Are you sad?" he asked. Hooray! My son recognized an emotion in another!

"Yes" Jack placed a hand on her shoulder, sweetly. Yes! Joint attention and empathy!

"You want me to fuck him up?"

Yep. That's what he said. She tearfully shook her head "no". 

I don't think Jack knows what "fuck him up" means. I think he's scripting, but not sure. 

But I do know he recognized emotion in a classmate, I do know he felt empathetic, and I do know he problem-solved. Take the word "fuck" out of the equation and it was the greatest conversation he's ever had. Guess what? I was silently proud. Yep. I was. 

We're working to get rid of the word. We're also working to get that level of connection to a friend.

I told my wife and she thought the story was appalling, yet funny. She said she was also proud of our chivalrous son in a strange way. I don't recall Malory or De Troyes writing about Lancelot offering to fuck up Modred for the love of Guinevere in their tales of courtly love, but I get the connection.

It is absolutely inappropriate for a six year-old to drop the f-bomb at school. 

But this was his reward the next day:

The entire way home.

And nobody had to get "fucked" up on the way.

Harder Than You Think

   harder than you think

   PUBLIC ENEMY

   FROM THE ALBUM "HOW YOU SELL SOUL TO A SOULLESS PEOPLE WHO SOLD THEIR SOUL?"

BUY

This post is about the R word... No, not that one, Regression.

Regression is a normal part of any rehabilitation process. We've all heard the old saying of two steps forward one step back, and in no place is it more apropos. My son hit a major regression this summer that extended dangerously long into his first grade year at school.

When Kindergarten ended, he was a superstar. Our annual IEP happens to be near the end of the school year and leaving the annual last year none of us could have been prouder. I remember a feeling of triumph, accomplishment and pride when the school psychologist announced to us that she felt Jack might not need his aide next year. We had no behavior goals in the new IEP. Let me write that one more time. We had no behavior goals in our new IEP.

We had done it. We had beaten autism. My son was going to be "normal" by first grade. Screw all those people that said it couldn't be done. Screw all those people that had "misdiagnosed" him. My wife, myself, and mostly my son had put in the necessary hard work to overcome this so-called disorder.

And then the regression started.

It was gradual over the summer. He went to summer school. He went on vacation for a week. He went to a day-camp at a special needs school. Behaviors getting progressively worse and worse. Mastered skills slowly slipping away. Stims becoming more and more physical, more and more aggressive, and, quite frankly, more and more alarming.

By the time first grade had started, we were back to where we were at the beginning of Kinder. Jack was removed from his General Ed class daily because of behaviors, or disruptions, or aggression. All the "experts" gave us the usual answers. "It's a tough transition", "First Grade is more demanding", "It's just a phase". But they were the same people he knew in Kinder. They were secretly as confused as we were.

Then rock bottom came. I got called to pick up Jack from school... again. This was becoming commonplace. This time, however, his aggressive outbursts had sent his BIA (one-on-one aide) to the hospital. I'm using hyperbole for effect here. She was fine and it was incidental contact that lead to the injury, but the fact remained the same. I was called to the principals office to take him home... again.

It was in that final meeting I said the words I regret the most. I am embarrassed to admit it, but I looked in my son's eyes and said "Jack. You are embarrassing yourself. I know you are capable of so much more"

I had done it. I had publicly blamed my son for his actions. I was the one who had publicly shamed him. I was the one who forced him to wear that scarlet A on his chest. It was me, his biggest champion, that had expressed my disappointment.

And we went home... silently judging each other.

I feared CDD (Heller's syndrome). I thought we were losing him for good. I thought I may have only had a few weeks left with him here. I remember later that evening, staring into his eyes while he stimmed through flipping the pages of a picture book, thinking he was gone. The sound of David Bowie singing "Can you hear me Major Tom?" playing over and over in my head.

And I cried. For me. For my wife. For his sister. For my sweet, sweet boy.

He came around. School started to get better. He started to spend more time in the class... "accessing the learning environment". The aggression died down. The behavior improved. The skills slowly returned.

My friends, it never ends. Parenting never ends. To quote a favorite movie "you never cross the goal line and get to spike the football".

My wife saved me. She was the one that came in and took over. She decided she was goiong to right the ship and stay the course. Our in-home ABA therapist saved me. She didn't panic. She stuck to the plan, not only for Jack, but for me, too. The school saved him. They didn't give up, when they easily could have. I am eternally grateful to all of them.

If regression is a bitch, then disappointment is her sister. You might flirt with her, but you don't want anyone to know.

Lean on those around you. Take advantage of that friend that is trying to lend a hand. Tell your spouse how you feel. Tell your doctors that you're scared. Allow yourself to be sad. Stay the course with what you've chosen. Admit you are human. Admit you are fallible.

Above all else, don't forget to love and never, ever, give up hope.

None of us are in this alone.

Sometimes parenting is harder than you think.

Bicycle Race

   Bicycle Race (Album Version)

    QUEEN

    FROM THE ALBUM "GREATEST HITS"

 

BUY

First grade has not been easy. We are two months in and we are finally spending quality time in the classroom. We are no longer having aggressive or violent outbursts. My wife and I are trying our hardest at home to keep up the academic skills that he has been missing by spending so much time out of the classroom, and it's very hard.

We are so concerned these days that we may have pushed for bad choices regarding placement. Let's rephrase that to "inappropriate" choices regarding placement. We are beat over the head with phrases like "least restrictive environment", and "access to the learning environment", and "disruptive behavior"... so much so that they have almost become pronouns in our house. But there is good news. We are, at long last, moving forward again. We took about 8 steps back, but we're 3 or 4 steps forward.

That's all I want to say about Jack's recent regression right now.

Here's what I want to say about Jack.

Jack turned six about 2 weeks ago and for his birthday, I bought him a bike. Jack has very poor proprioceptive processing skills and presents as extremely clumsy. Most children can ride a bike with training wheels around 4 years old... some earlier, some later. There are so many moments that we as parents of special needs children will be robbed of.

But not this one. Fatherhood may not be exactly what I expected it to be. I figured I'd have all those great Americana moments that all fathers have.

And here it is. I got to teach my son how to ride his bike.

So, what do we say when Autism comes to take away another memory?

"Not today"

That's my son. Riding the fuck out of his new bike.

President

   President

   WYCLEF JEAN

   FROM THE ALBUM "WELCOME TO HAITI CREOLE 101"

 

BUY

I've been reading all morning about how wonderful it is that President Obama mentioned autism in the debate  with Mr. Romney last night. I agree. Wonderful indeed.

Huge strides have been made in the last four years in autism awareness, research, services, and public perception. The advocacy groups are growing in numbers and funding. We're crashing down School Districts, City Halls, and State Capitols everywhere. We are making progress. Insurance reform for Children with Autism moves forward every day.

But that is on a local or state level.

Mr. President, you mentioned increased services, research, and funding for autism in the debate last night. I "HOPE" you mean it.

Because this is the last time you mentioned special needs.

http://www.youtube.com/watch?v=2HOBTUCv4o0

That was a little less than four years ago...  And you have done nothing to make up for it.

Our community is strong, powerful, empathetic and votes.

I'm glad inspired you included us in the debate (heck, the other guy didn't even mention us), but I "HOPE" you truly are interested in moving "FORWARD", and not just trying to get our votes so you can ridicule our children on late night talk shows again.

We will give you the ball again... let's see if you can medal... Special, Para, Junior, or Olympic-style.

Thank you.