I am a Rock

I Am A Rock

SIMON & GARFUNKEL

FROM THE ALBUM "SIMON AND GARFUNKEL'S GREATEST HITS"

BUY

My son goes through a lot of obsessions (most kids do). A television show, or book, or video game, or song that dominate their life and thoughts.

As Jack gets older, the length of time of these obsessions become shorter and shorter.

Here's a list of a few things, because of my son, I wish I knew less about:

The Incredible Hulk
Minecraft
Harry Potter
Gangam Style
Minecraft parody songs
The Avengers
Dominoes
Collecting Rocks
Collecting garbage
Flipping book pages
Angry birds
Jurassic Park

Those are all in the last year.

Some are healthy, some are not. Some of the more "violent" obsessions had to be taken away (namely the incredible hulk) because aggression and rage became a little too much for us and/or the school to handle. I wrote perhaps my most insightful blog ever about the incredible hulk, my son, and an OT assignment about a year ago... worth a read HERE.

Collecting rocks was an interesting one. Jack really wanted to be a scientist, so he would gather rocks around the schoolyard and bring them home to "study". It became clear to me that this was a coping technique. He gathered the rocks to ground him. If he was nervous, intimidated, scared or anxious, he would find a rock... something that stayed constant over hundreds of years. Something that was unchanged in the face of adversity. Something that was the result of time and pressure.

The tougher the day, the more rocks came home.

But he grew out of that one, too.

Right now, we're on Star Wars (the first trilogy, thank you very much). But ever so briefly, and possibly still around, Jack has taken an interest in My Little Pony.

We have a 3 1/2 year-old daughter, Jade, who is a big time My Little Pony fan. She has a crapload of toys and watches all the videos she can find. Jade idolizes her brother... sure there are a lot of "don't touch my shit!" arguments, and the such, but she adores him. He rarely seeks her out to play... and if so, it's usually through something destructive (Like chasing the cat, or jumping on the couch)... but he does dig her.

We went on a quick family getaway this past weekend to San Diego and paid the extra money for a suite at the hotel... Jack and Jade got their own room! And I came out to find this in the morning.

And Jack asking Jade questions about who was who in "Canterlot" or "The Crystal Empire" (or wherever the hell those ponies live).

The rest of the trip was fine... the expected fighting and meltdowns. The zoo was nice. Dinner was fine. But I wanted to capture this moment. I don't want this moment to end. This is an obsession I hope hangs around a very, very long time.

We're going through some major changes. We're phasing out in-home behavior therapy, moving into social groups, starting a new school, and becoming more and more aware of meeting the attention needs of our daughter.

Jack has been a champ through it all. Few behaviors at the new school. Doing his homework. Even playing with a friend or two. Couldn't be more proud of all his hard work.

I hope Jack can see how much his sister adores him. I hope he is using her as his "rock" to transition. I hope he is trying to find a common ground (My Little Pony) to reach out to her. I have all these high hopes that their relationship can blossom into something mutually beneficial. I hope she can become his "rock"... something unchanging in the face of adversity.

***

Things are quiet and I'm doing laundry this morning.

And I found this.

A rock in the pocket.

Has he been gathering rocks again? I went to his nightstand (his "treasure chest") of his most favored items.

Yep. He's been collecting rocks again. A few strings, a few bottle caps, his JPL tour nametag... and Pinkie Pie.

Jack, a jade is a kind of rock... and she will be there for you.

Thank you for reading.



*** On a side note... I've spent about 4 days looking for that fucking Pinkie Pie doll to the wailing of my daughter who insisted it was somewhere in the house.

Resignation

I'm visiting my parents with the kids this weekend and my mom asked me to read something she wrote in her writing class... it was a five minute assignment on the word "Resignation"....

And this is what she wrote.

The crash in the living room, followed by the wail of six year-old Jack, sent 'chalk on blackboard' shivers through my body. In the middle of the floor, a shattered crystal dragon reflected rainbow designs onto the wall. Jack self-imposed the time out and stood in the corner, head hung, repeating 'sorry.'

What are you doing in the living room? I wanted to scream. Instead I began picking up shards and knew they could not be glued back together.

'I know you are sorry, Jack.'

He turns to me with wet, blue eyes. 'I wanted to dance with him. The dragon wanted to shoot fire... I heard it say that... we had an adventure... I didn't know he would break.' The sentence ran on with a few breaks, a few tears, and the never ending chant of 'I'm sorry.'

I put the dragon tail back on the shelf and went to Jack. I knelt before him and pulled him close and held him tight. 'Shush,' I say. 'I know it was an accident.' He is shaking violently as I remind him, 'Breathe. Slow breaths. In. Out. I rock him until he finally goes limp.

In my mind I repeat, it is a piece of glass, it can be replaced, it's only broken glass. But I can't help noticing the beauty of the prism reflected on the wall.

I study Jack, my 'broken' grandson with autism and say, "I can't fix it, but it is okay."

And, my dear love, I can't fix you, but you are okay.

I'll Be There For You

 

I'll Be There For You

BON JOVI

FROM THE ALBUM "BON JOVI GREATEST HITS"

BUY

It happens at the strangest times. You start a new school for your son and things are working well. And then you see it. You drop off your daughter at pre-school, have a quick chat with her teacher. Smile graciously and accept the compliments about how great she's doing. You remember how hard it was for Jack at this same pre-school. You remember the time the teachers came to you and said "we know his 3 year-old check-up is coming soon... here's a list of concerns" and presented you with a list of behaviors and quirks to pass on to his pediatrician.

I remember how angry I was at first, then how amazingly grateful I was.

You wave good-bye to your baby girl. She says "I love you, daddy. Keep it real (yes, I taught her that one)". You remember that you picked up coffee for you and your wife at home, and it's waiting in the car. You look forward to lazing on the couch at home and slowly caffeinating yourself toward your day. Even the thought warms you.

And then you hear it. A child crying. A little girl standing in the doorway between the 2 and 3 year-old class. She must miss her mommy. But the wail continues as you walk by and smile. It gets louder, more hysterical, and you look for a teacher. Then you notice the hand-flapping... and the tippy-toe walking... and the lack of vocabulary... and your smile fades.

As you walk to the lobby to sign in your child you see the teacher talking to a mother. This was Jack's teacher when he was two. She shoots you a look. A look you've seen before. A look that simply says "help me".

You slow your pace to eavesdrop a bit.

"It's only her second day. She's never been away from me before. This is normal, right? She doesn't like to be touched. She doesn't talk much. Her pediatrician described her as 'Universally Delayed', but it's not Autism"

You feel a little guilty as you sign your child in and you say to yourself "yet".

But this isn't your child. This isn't your problem. This isn't your journey. I'm not a physician, what could I possibly do? I'm sure there are enough busy-bodies in the mother's life that this child is being assessed already... she said a pediatrician described the child as universally delayed... she must be on the road already. What can I possibly do?

As these thoughts cloud your head you realize you have already instinctively gone back to your car. You start your car and wait for the car in front of you to leave the circular driveway. It belongs to the mother, who is climbing into the driver's side quickly.

She doesn't start her car. As you get ready to tap your horn you look again. Her face buried in her hands, crying.

Her journey has just begun. You remember those mornings. I remember rushing away from drop-offs and appointments to hide in my car... and simply cry.

I open my car door and walk over to her window... yep, she's a mess. She hastily and tearfully rolls down her window and starts to apologize for not leaving.

I cut off her apology and hand her the coffee I had bought for my wife (she can get another). And it all came back to me. And I remembered something someone said to me at a birthday party when we still weren't sure where Jack's journey was going. A party where my wife and I had taken turns all afternoon following/directing Jack's maladaptive behaviors. The grandfather of the child who's birthday we were attending introduced himself as a psychologist (when he wasn't drinking beer at a birthday party). And he said to me perhaps the most important and heavy words I've ever received about my son... and I took a deep breath and repeated them to this mother:

"You deserve to be here. She deserves to be here"

I went back to my car. She smiled and waved back as she drove off.

And I placed my face in my hands and cried for her.

I'll be there for you.

New Kid in Town

New Kid In Town

EAGLES

FROM THE ALBUM "HOTEL CALIFORNIA (REMASTERED)"

BUY

I've probably hit you over the head with that Jack is going to a new school... you're probably tired of hearing about that. Yep, Jaye, we get it. Transitions are tough. So, today, I give you an entirely different and self-indulgent blog. I'm going to let you in on a little secret...

Transitions are tough on parents, too!

My wife and I met with Jack's teacher, his RSP teacher, and the school principal on Friday afternoon. It was great. Everyone was really nice and seems interested and excited to have have Jack start on Monday. But, as we were leaving, I couldn't shake the feeling that transferring schools was a mistake. I was looking at every little thing at the new school as a potential pitfall. And then my beautiful, intelligent and insightful wife said it.

"You'll do fine"

Yeah. She was right. I have to transition to a new school, too. I had become accustomed to the old school. I knew the IEP team well, saw them every day. I knew Jack's teacher(s). I knew the other kids, and their parents. I never had to explain anything anymore. I had my "wolfpack" (the other Stay at home Dads I had befriended over the years). I had my morning coffee friend.

I had my routine.

And now there is the chaos of the unknown. Do dudes hang out at this school? I only know three families here! I still have to walk Jack in, where the heck do I park? The 7-11 is almost two blocks away and that's the closest coffee, for cryin' out loud.

***

So, last night, my family is in town visiting to go to Disneyland today, and we had a BBQ at our house. Sounds routine and comfortable enough, right? 14 people... six kids and eight adults... all who know me well and who know Jack well.

But, for some reason or another, Jack was not having a very good day. Sometime around the start of dinner, I took him for a drive to escape his personal mayhem. We went to the aforementioned 7-11 (a convenience store for those international readers) to grab a soda and I drove him by the new school one last time in the hopes of familiarizing him...

And there was a bake sale! So we went to the front lawn to meet the PTA, the Foundation, and some other parents and kids.

And I bumped into one of the moms from the three previously mentioned families I knew there. This family used to live across the street from us, and moved about a year or so ago and have a son Jack's age that I knew went to the new school. Anyway, I saw Rachel (the mom) at the Bake Sale and said hello. She could not have been nicer. She had weighed in on the last blog I wrote (This one) and said she looked forward to seeing us at the new school. She told me, among other things, this. "This is a really good school. You're going to be really happy here".

And that's all I needed to hear. On a disappointing side note, Rachel is a party-planner/caterer/lifestyle guru and all of the baked goods she had brought to the bake sale had already been sold. Damnit! I would have liked one of those.

I had bumped into one of the families I knew. A family I admire. A family I adore. And they gave me their blessing. The second family I knew (and their daughter) was back at the BBQ, so I had already received their welcome.

***

This morning I took Jack to the new school for the first time. I realized how nervous I was, but I brought my secret weapon, my calling-card for conversations, my rock... my wife!

This post isn't about Jack, so I'll simply say the drop-off went fine... better than fine, it was good.

There was a coffee and donuts event for the parents in the cafeteria. We went. And I bumped into the third family I know. She has a son at the new school on the spectrum. We share a time at the OT clinic, so I have spoken to her many times in the last two years. She came over and sat with my wife and I and was happy to see us. She said what I needed to hear, again, "this is a really good school. I think you'll be very happy here".

Then, something very cool happened. A husband and wife came over to our table. The lady said "you came over from White Elementary, right? I've seen you around there." She turned to her husband "This guy writes the blog I was telling you about."

How the heck did she know that?

They were a new family at the new school, too. Could not have been nicer.

***

So I left feeling happy. I left feeling welcome. I left feeling assured, and I left feeling, most importantly, optimistic.

This may sound funny, but I can't express enough how grateful I am to have such a kick-ass wife. She's really just a lot cooler than I am, and can throw herself into any conversation with ease. Thanks, Baby Love.

Transitions are tough on our kids. They're tough on us, too.

I, too, embrace the comfort of routine.

It's 1 o'clock now and school gets out at 2. So if you'll excuse me, I'm going to go a little early and see if I can make a friend.

Thank you, as always, for reading.

Jack and I on OUR first day at the new school.

Hurt

Hurt

JOHNNY CASH

FROM THE ALBUM "THE MAN COMES AROUND"

BUY

Jack will be starting a new school in a little less than two weeks. He will be attending the Visual and Performing Arts Magnet school in our district. Transitions and change are quite difficult, but my wife and I felt this was an opportunity we could not pass up. I've said it many times before, but if an integrated arts curriculum allows Jack an outlet to see that he can not only succeed, but thrive, in school, we'll take it.

We were not unhappy with our old school, in fact quite the contrary. There were several people there that really stood up for my boy. Teachers, specialists, and administrators that educated him, that loved him, that respected him, that saw value in him, and, most importantly, championed him. I will miss them dearly. I will  never forget what they have done for my boy, for me.

And I was comfortable at the old school. I had made a handful of friends with mostly the other dads. Both special needs parents and NTs. A group of Dads having coffee with our three year-olds in tow hanging out in front of the Starbucks like some twisted 40s version of Jay and Silent Bob.

Mostly I will miss Mike. Mike's daughter was in Jack's class, his youngest was Jade's age (and they were buddies), and his eldest has Down Syndrome. I had the pleasure of hanging out with a support every day. A support that easily could have swayed my decision into staying at the school. A support that was a fellow special needs parent. A man I could talk to about real shit... all of the "nicey-niceys" put aside and have real, hard, often heartbreaking conversations about our children. All political correctness aside, all advocacy aside, all that "presuming competence" crap aside and talk.

All that aside, we mostly talked about music, Game of Thrones, and farts.

Mike gave me the blessing by saying "you're a fool to not take this opportunity"... and that's all I needed.

The coffee shop is still close by, we'll see each other soon, I'm sure.

Here's what I won't miss...

In the last week of school, it came to my attention that several (at least 4) parents had asked the principal that Jack not be in their child's class next year.

And that hurt.

It is, perhaps, the best way you could have handled it. I'm glad you didn't take out your frustrations on Jack, or myself, so I applaud your "restraint".

But it still hurts.

I am the parent of a special needs student in today's public education system. I understand the benefits of full-inclusion. I understand the risks (both to Jack and/or his peers) of full-inclusion. Sometimes I feel like we're all caught up in some big social experiment... sometimes it's great, sometimes it's not. An experiment that will not publish its conclusion before the analysis is completed. A dynamic "learning process" for all of us.

I am truly, truly sorry that Jack is a distraction to your child. I wish he weren't. I really wish he weren't. You have done the right thing in asking quietly, behind my back, for what you felt was best for your child.

But it still hurts.

I want to leave you with two thoughts.

First: "Not being mean", is not the same thing as inclusion.

Second: Jack is trying as hard as he can. He has a team around him trying as hard as they can. He has two parents that would love to simply throw their hands up and repeat the so often used mantra "we're doing the best that we can", but it wouldn't be true.

Instead, I throw my hands in the air and say, "I'm trying as hard as I can".

I will sorely miss several people at RD White Elementary. A huge thank you to all of them. You all tried as hard as you could.

To the parents that no longer wanted their child around mine...

You win. He won't be.

We'll find the same triumphs and tribulations at the new school, I'm sure. Until then, in the immortal words of F Scott Fitzgerald:

So we beat on, boats against the current, borne back ceaselessly into the past.

Thank you for reading.

You've Got a Friend In Me

You've Got A Friend In Me

RANDY NEWMAN

FROM THE ALBUM "DISNEY/PIXAR GREATEST"

BUY

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

Zombie

Zombie

THE CRANBERRIES

FROM THE ALBUM "STARS: THE BEST OF THE CRANBERRIES 1992-2002"

BUY

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.