Come Sail Away

Do you remember those "Hidden Image" paintings that were really popular in the 90s? You were supposed to stare at a series of seemingly random dots or images for a long time and a background holographic image of a sailboat (or something) was intended to pop out.

I could never see the sailboat.

***

Jack has been in Summer School for two weeks now. Summer School has always been great for him. Smaller class, shorter hours, less demands, who knows why, but it is usually a breeze for us. This year Jack made us a deal that since Summer School is shorter, he wanted to try going un-medicated for a day. He said he was ready to work hard on focusing and listening enough to prove that he doesn't need to take his meds at school anymore.

I will take one paragraph here to discuss Jack and meds. I won't go in to specifics because this blog is not intended to be about medications for our kids. I am not interested in defending or disclaiming any pharmaceutical or natural treatments people or their children use. I have several blogs about that if you really want to have that argument or push your agenda... please find them. Jack hates taking his meds. He likes the way they make him feel. He recognizes the effect of focus and attention they bring him. He prefers it if we are going to go to a birthday party or a movie where he recognizes the meds will allow him to have a better time. But he hates the physical act of actually taking his pills. We have already been through the other delivery systems, and pill is the way he hates least. Also, his meds do severely alter his hunger drive. I don't really have a "picky" eater... I have a kid that just isn't hungry. So, on weekends and non-school days, Jack is unmedicated... mostly so he will eat. And eat he does (which is nice).

So Jack has earned going to Summer School without meds one day a week. It has been okay. Jack has severe ADHD... not the kind of snap your fingers to get the kid to pay attention type, the "we want you to try and sit still for 1 minute straight type."

ADHD is not only for movement. His little brain is constantly seeking stimulation. Physical, mental, verbal, sensory, whatever, he seeks stimulation constantly. This is a very difficult child to "control" in a classroom setting. This is a very difficult child to "control" at home. This is an extremely difficult child to simply have a two-sided conversation with.

***

My wife took the baby to San Diego last weekend and I took Jack to the arcade at our local mall. Jack was unmedicated and all over the place. He had fun, don't get me wrong, but it was an afternoon of me holding his shoulders so he didn't slam into people, telling him "I already heard this", and "Jack, quiet voice". We made our way up to the food court for dinner and I passed one of those sailboat paintings.

I stepped back and took a stare. Nothing.

Then Jack started knocking on the window of the storefront and we re-directed to the food court.

***

My wife called on her way home and we were talking. She asked me how the day was and I told her it was rough. Nothing major, but it's truly exhausting to keep up with the ADHD (she knows this, btw).

But there was something different about that mall, that day, that dinner... I told my wife that I just started feeling bad for Jack. I can tell that he is trying sometimes (to stay still, to have a conversation, to lower his voice), and I appreciate the effort... but most of the time, he just can't help it. He's not wired that way. And all the re-direction, social stories, modelling, or yelling in the world aren't going to help.

He just doesn't see the world the same way I do.

And that's beautiful in its own way.

But I can not allow that beauty to hit other people, get kicked out of class for talking (more specifically, refusing to stop talking), or saying mean things in your enlightened beauty.

I'm still his god-damned parent. My wife and I are still responsible for his future and his personal responsibility within.

We are responsible so that he knows and believes that despite his abilities or disabilities he can still accomplish anything. He needs to know and believe that if he wants to open the firmament of Heaven, he will have to work for it.

We are responsible that he knows he belongs.

***

Jack saw his psychiatrist yesterday. She got to see him unmedicated for the first time in several months (maybe even a year). She was impressed with how well he interacted with her. She also noticed how distracted he was.

Two conclusions:

First: This gets better. He will learn and mature into a better, more manageable inner-self.
Second: His meds are working really well.

***

His neurology is different than mine. I accept it. I know how hard daily tasks that are human nature to me can be challenging to him. I recognize and praise the moments that I can tell he is trying.

And for that... I am proud (of him and us).

***

I may never ever see that fucking sailboat...

But I'll never give up trying.

Fly

Here we are on the eve of the last day of school for my third grader. We had our IEP a few weeks ago. It went swimmingly well. I realize now that I never mentioned it on the blog or the Facebook Page... and I realize now that I have written hardly anything about Jack, or autism, in the last few months. There are 2 reasons. 1) Epilepsy took over our lives for a little bit there. 2) There is very little to write about that hasn't been said about Jack.


And that, my friends, is a good thing.


***


The other night, the four of us were talking on the couch. Jade was asking us if she was ever going to leave the house we are in now. Julie and I were fantasizing again about the house we want to buy atop the Sierra Nevadas. The mountain house we want to retire in. The mountain house we want to die in. The mountain house we saw as a young couple on the most romantic drive we ever had, almost 20 years ago. The same drive we watched the sun go down over the Northern Truckee River and listened to "Not Dark Yet" by Bob Dylan over and over again. The drive we fell deeper in love over.

The mountain house that we both wanted to be scattered from.


***

Third grade was amazing for all of us. We had an amazing teacher. We had an amazing team. We made amazing friends. We caught up academically. We caught up socially.

We belonged.

But I had very little to do with any of that success. Sure I did homework. Sure I drove to therapies. Sure I filled out permission slips.


But it was all Jack, this year. This year it was all my boy. I'm always careful to thank Jack first for his successes, they are, after-all his to own. But this is the first year I've really, honestly, entirely, and humbly meant it.



I am so proud of how hard you have worked this year.




So proud of you facing fears, discomfort, and uncertainty and rising above.

Jack, did you know that this year at your IEP you had some services cut for next year? The advocates in your mother and me protested. The parents in us beamed with pride. Why?

Because they were the proper cuts, not because you had "aged out" of them, but rather because you had "graduated" them. We celebrate that those OT services are now available to another student. That extra 30 minutes of RSP can go to a new little girl that might need help reading.


You will start 4th grade with all of your peers, at grade level...


That's not say that there isn't work to still do, but you've done so much.


***


You we're talking with your mom tonight about tomorrow being the last day, and I can tell you were sad. I know it will be hard to say good-bye to your friends. I also know this is the first time you've ever struggled with that. I know this is a hard emotion for you to verbalize.


But you'll do it.


I will help you.


***


Back to the mountain house...


Jade wanted to know if she would move there with us. She wanted to know where she was going to go to college. She wanted to know where she would practice law.


Jack asked if he was moving with us to the mountain house.


Julie said "I don't think you'll live with us there, but you'll be close by. You'll probably be a trail guide or some sort of naturalist since you like hiking so much. But you can come over for dinner any time."


We all laughed. We had a great moment.


***


It wasn't until a few days later that it hit me.


Julie's fantasy involved Jack as an independent adult.


***


I'm 80 years old. The sun is going down over the river. My wife is a retired judge by my side still holding my hand. My daughter is off changing the world.


My son is off changing the world, too.


And I smile.


"I was born here and I'll die here.
Against my will.
I know it looks like I'm moving
But I'm standing still.
Every nerve in my body
Has grown vacant and numb.
I can't even remember what it was I came here to get away from.
Don't even hear a murmur of a prayer.
It's not dark yet
But it's getting there."


Not Dark Yet - By Bob Dylan


In the meantime, my boy...


Fly.