Thursday, December 12, 2013

Respect


I've written before about how ripe the OT waiting room is for stories and teachable moments (The Waiting), but today I want to write about how that can be a teachable moment.

My wife and I spend a lot of time discussing/recalling the special needs kids in our lives when we were growing up. Julie has always been impressed by my comfort level with special needs kids (and adults), and she once admitted to me that, as a teenager, she went out of her way to help/volunteer/include, but was often intimidated or hesitant because "she didn't know what to do". She wanted to know how I had such an ease and/or grace with individuals with special needs.

I grew up the son of a pediatric physiatrist. Children with severe physical and mental disabilities surrounded my life. They were Dad's patients. They were my friends. They just were... there. My younger brother has a birth defect rendering him unable to walk without forearm crutches or a wheelchair. He was just... there. I fought with him the exact same way I fought with my older, able-bodied brother. In fact, we usually had to team up to fight said brother.

Only in recent years have we really discussed disability. You see, my younger brother today is one hell of a para-athlete. He is also one hell of a "roll" model, spending time volunteering and mentoring the para athletic youth of Sacramento.



This is a recent picture of Ro (my brother) at Ability First Sports camp for para-athletes. If you're scratching your head, you can probably figure out why "Find My Eyes" is very in to adoption rights as well.

I digress to talk about a man I admire very much. My personal "roll" model, and Jack's favorite Uncle (although that may be because Uncle Ro is also a "techie" and, according to Jack, can fix anything).

So the answer to the question my wife asked me long ago is:

"Inclusion"

I swear I'm going to get to the OT waiting room story, but I want to tell you where we, as adults, see inclusion in action in real life.

Before we moved to the other side of Glendale, we shopped at the Albertsons that used to be on Allen and Glenoaks. Jack was a baby and was the "valentine" of all the ladies that worked there, and, as local grocery stores tend to foster, we had a nice relationship with everyone there.

There was a developmentally disabled man that bagged groceries there. He didn't speak much, a few words or phrases, but he grunted a lot. A very nice man. A very nice man, however, that was about 6'3", 250lbs. or so, and often had "inappropriate" interactions (or, intimidating, at the very least) with the customers. 

Albertsons had an amazing manager... his name was Greg. The reason I mention Greg is the ease and grace he dealt with "Johnny". If Johnny was attempting to offer to carry out groceries without speaking words, intimidating, perhaps even harassing, the young woman in line,. growingly frustrated to find the words he could not speak. Greg would seamlessly step in and sooth the situation... to Johnny! He would address his employee, not the customer, and mellifluously say "Johnny, do you want to ask her if she would like help to her car"?

I'll never forget Greg. He so naturally empowered his employee. He so naturally showed the respect Johnny deserved by addressing him, rather than the customer. He so naturally loved his employee, but with respect, not condescension. 

That Albertsons closed down. I hope Johnny and Greg stayed together in their next job.

***

We've had the same time slot at OT for a year or so now... and so do most of the other kids. There is a boy there... "Billy". He might be a teenager (13 or so). He is non-verbal. He communicates through a few words and mostly verbal exclamations (grunts). A sweet boy. With very sweet parents.

He has recently taken a liking to Jade (who hangs out in the lobby with me). He comes over to Jade and sits next to her and makes "popping" sounds to entertain her. He laughs to her hoping for a laugh back. He is very interested in her My Little Pony video on her iPad. 

But Jade is scared of him.

How can this be? Jade is surrounded by disability? Jade knows better? 

I used to try to force Jade to interact. "Jade, say hello", "Jade, be nice", "Jade, share".

And I thought of my wife telling me she was scared when she was a kid... she didn't know what to do.

I can not force tolerance or acceptance on a 3 year-old. I can't...

BUT I CAN MODEL IT!!!

Billy and I have had more conversations than I care to remember over the weeks. Even if I am guessing, I always remember the lesson I learned from Greg at the grocery store... respect, not condescension. She will accept what I accept.

And finally, after about 2 months, yesterday in the OT waiting room... She turned her iPhone to Billy and said 3 simple words:

"That's Pinkie Pie"

***

A story my wife doesn't know I'm going to tell.

I took Jack to the driving range about a year ago. Jade (still in her stroller) and Julie hung out by the benches while I attempted to hit a bucket of balls with Jack.

Every night around sundown, a man wanders onto the driving range, gathering aluminum cans and discarded golf balls. He speaks aloud to himself. He smiles when he catches your attention, but it seems forced, almost as if he's been told to. 

He is harmless. The course staff clearly allows him to be there. The golfers on the range mostly ignore him and he ignores them.

"Keep your head down when you hit the ball, Jack" 

And I turn to see my wife speaking with this man.

"What are you doing"
"I'm gathering cans. I can sell them. I take them to a place that gives me money for them"
"That's a great idea. My name is Julie"

Respect, not condescension.

Tuesday, December 3, 2013

Mmm Mmm Mmm Mmm




Jack has what his psychiatrist calls a "travelling tic".

Tics are fairly common in our community. They can be behavioral or neurological (or both). Jack's change after about a month. We've seen about 13 or 14 (a nose wiping motion on his sleeve, a quick inhale, hand flapping, page turning/flipping a book, etc.). It's a release of energy, anxiety, or stress. About a year ago we were in the tic that we called "the face". Jack would scrunch up one side of his face, closing the eye, grimacing the mouth to one side, and then loving the reaction as his eyes refocused.

Stims, tics, noises don't bother me too much...

But I hated "the face". Yes. I hated it.

Why did I hate it so much? Because it mimicked seizures. It was distracting in class and looked painful. The little girls in his class would always say something like "are you okay?" and the little boys in class would mimic him doing it to make fun of him (on a side note, Jack thought the little boys were playing along with him... because they would do "the face" and laugh... he does not have a good understanding of the difference between laughing with and laughing at... let me re-phrase that: He has NO understanding of the difference between laughing with and laughing at. Perspective processing disorder. if you didn't read my blog on Autism as Perspective Processing Disorder, please take a moment to do so by clicking on that hyperlink).

But my biggest concern was seizures. We called the pediatrician (repeatedly) requesting yet another referral to a neurologist... only to be denied (again) because "In California, neurologists do not treat autism".

But they treat seizures!!! Pardon my visceral, gritty reaction, but fuck them. For another blog, but there is something incredibly wrong with a person (underwriter) sitting in an office overseas somewhere writing a letter denying a REFERRAL from a physician because they don't want to pay for it. Another time, Jaye, another time.

We gave up on that fight after concluding ourselves and with the help of some physician friends we have that he was not having seizures, it was a tic.

Luckily, Jack (and us) has a psychiatrist. She saw him regularly and had noticed "the face", and DOES treat things like tics.

But Jack had been making the face so badly at school one day that the school nurse sent him home because he was "clearly having seizures". I brought Jack home, sat him on his bed, and had probably the best conversation I had ever had with him about why daddy didn't like the face, about what a seizure is, and why that scared daddy. I asked him to try something.

"Let's see if you can go 2 whole minutes without making the face... I'll time you"

And he sat quietly for 2 minutes without making the face... and was proud of his accomplishment (as was I).

"Now, I want you to squeeze your hands together for the next 5 minutes every time you feel like you want to make the face"

Classic re-direction. The next 5 minutes were some of the longest of my life as I watched my boy stare at me and squeeze his hands together every thirty seconds or so... but smiling every time he did. The face never showed up. It was painful to watch him try so hard, and concentrate so intently on his hands, but he did it. It worked. The tic could be re-directed.

So, I called the psychiatrist about the face the day he had been sent home (which, ironically, we were in his IEP when she called me back, weird timing, eh?) And she told me that whether it was behavioral or psychological she would approach it the same way initially. She told me to try and re-direct it and see how he would react. There were medications, but she didn't want to put Jack on any medications before we had exhausted behavioral techniques first.

I felt like the smartest and best dad in the world when I told her I had already done that... with some success.

The face moved on to a new tic (which was kind of a "dipping" movement from the hips that looked like a guy trying to "walk out" a wedgie).

***

About a month ago, Jack's travelling tic took a new direction for all of us. It became vocal.

***

Jack will "hum" to himself. A very rhythmic four-syllable hum... Mmm Mmm Mmm Mmm (which is amazing that I found the song that titles this blog).

It's fairly quiet, but definitely audible... and quite distracting if a class is trying to take a test.

We are confident it will move on to something else, but I've had several talks with Jack about why the humming is distracting and he should try to re-direct it at school. But I also was reassuring to point out that he can hum anytime he wants at home. That it was fine. That it was okay.

He said he would try.

***

A few weeks ago Jack and I were sitting in the backyard reading and listening to music. He was very engaged and we were having an exceptionally connected moment. He excused himself from our bench and went over to the stoop by the kitchen door and sat by himself.

"What's going on, Jack?"

"I just want to be alone"

I respect that and turned the corner and told him that was okay... we all like our alone time.

The moment I was out of sight I could hear him humming.

And I sat down, out of sight, on the back steps and cried for him. Had I been too tough on him? Did he think his tic shamed me? Did he think I would be angry? Did he think that I didn't recognize how hard he had been working to control it? Had I failed him?

I pulled my knees to my chest and wrapped my arms around them and out loud said four very simple words:

"Mmm Mmm Mmm Mmm"

***

Jack, you could not make me more proud.


Wednesday, November 20, 2013

2nd Grade Show




My wife and I are (or at least were) both actors. As well-documented in these pages, we transferred Jack to the Visual and Performing Arts Magnet school this year. Well tonight is the "2nd Grade Show"... the dreaded school play.

From the ages of 5-12, my parents put me into acting. I was good at it, liked it, and it kept me out their hair for a few hours a week.


(Jordan in "A Midsummer Night's Dream" circa 1984)

Julie tried her hand in acting through college. Even tried it out as a career before she decided to go to law school instead.


(Julie's Headshot - circa 1998)


(Julie in the "Shakespeare Reading and Performance Group" after a production of scene nights. Julie is on the far left in the back row... fun side note: The guy below her in the white tank top is none other than Oscar nominated actor James Franco. Kind of cool, eh? UCLA - circa 1996)

Obviously, performing arts means a lot to Julie and I. The performing arts are woven into the curriculum at his new school and Jack loves drama class.

So, tonight is the 2nd grade show, and Julie and I were caught in an enigma. Jack has a very small part. He has one speaking line and three or four group reaction lines. The kids have been rehearsing for a little over a month and he has been doing well.

In all honesty, as with any second grade show, you attend to catch the "fuck ups". Someone will blow their line. Someone will knock over a piece of scenery. Someone will scream a line that is supposed to be whispered. It's kind of the fun of it. A drama teacher might have to run on stage and direct someone away. Those things are fine, funny, even expected.

But what if the little boy with Autism has a full-on meltdown? What if the little girl with Tourette's can't stop her tic? What if the little boy with CP can't wheel himself offstage because of unforseen accessibility issues?

Jack has been doing great in rehearsal. During rehearsals, however, he is medicated and has his behavioral aide by his side (or at least nearby). Neither of those will be the case with the evening performance. Take a moment to think about how difficult "acting"  must be on a child with autism. A child that already has a difficult time with perspective-taking. We want you to pretend to be someone else, surrounded by others that are pretending to be someone else, in an environment that is pretending to be something else, expressing emotions that are pretending to be something else... in front of 500 people!

But no! Full inclusion Dammit!

So, we wrestled with the ideas regarding the evening show. His part is small. We could just pull him from the evening performance (there is a daytime performance for the kids as well). We could do nothing and just presume competence and hope for the best.

That's what full inclusion is all about, isn't it?

No, it's not. Full inclusion is awesome. It's the ultimate goal. But we have an advantage... supports. Within his IEP Jack still has several "supports" and this is why they are there.

So I called the drama teacher to get a valuable perspective on what to do. Last night she called me back and I want to share part of that conversation.

I asked her what she thought was best given my (our) concerns and she handed it back to me. I think that if we can have one of us (Julie and I) backstage to remove him if necessary, that would be best. She agreed and granted us access and permission to do so. Well... that was easy.

We exchanged thank yous and then she told me this:

"You know, Mr. Capell, I just want you to know something. I have a gigantic soft spot for Jack. I have a sixteen year-old with Aspergers and four red-heads... how could I not love that kid? I am happy you don't want to pull him from the show and give him the chance to shine."

"I just really love that boy"

***

So, tonight, Julie gets to return to her acting roots and hang out backstage. My boy gets a chance to stand in the spotlight and get his first experience of thunderous applause.

And I get to wrestle with all the other parents, trying to find the best seat to take video, holding flowers... not for my boy, not for my wife...

But for the drama teacher. The next in what will hopefully be a long line of educators that not only champion my boy, but believe in giving him every opportunity possible... and love him.

I'll let you know how it goes...

Hell, we may discover that we have the next James Franco on our hands.


Friday, November 8, 2013

My America

It's 11:30 and the wife and kids are asleep. You make yourself a sandwich and cue up The Walking Dead, the show you're only allowed to watch after everyone else has fallen asleep. There's a sickness in the prison, and you've had to wait three nights to figure it out. You step outside to have a cigarette. It's a pleasant evening, cool but not yet cold.

Something catches your eye across the street. A car that doesn't belong in your neighborhood. A woman sitting in the driver seat. A man digging through the trash cans that have been neatly placed curbside for the early morning pick up. The man returns to the car with a plastic container of one of your neighbors take-out. He hands it to the woman in the car and she sniffs it, examines it, and eats it.

You think to yourself that you could just give them the sandwich you made sitting on your counter. People shouldn't be eating out of trash cans in our America. The woman gets out of the car and you notice she is unmistakably pregnant. She throws her garbage in the street and heads the other direction to check the trash cans on the South side of the block.

You think to yourself about the baby. You remember you got some cash for the babysitter and still have $30 in your wallet. When you're done with your cigarette, you'll give it to her. And you can make yourself another sandwich.

Lost in your daze, you've failed to realize the man has come over to your side of the block. He's at the neighbor's trash can. They still don't see you standing on your dark porch. You put the cigarette out and turn back to grab the sandwich when something new comes out; a flashlight.

Your mood changes as the man shines the flashlight into your wife's car parked on the street. You watch in horror as the man tries the door to the car. Luckily it's locked. He tries one of the rear doors. Locked as well. You loudly step on one of the dry leaves that litter your porch. He notices and looks up and shines the light on you.

Although blinded, you can see his shoulders slump and his head hang downward. You say nothing. The light goes down to his feet and you can see his face. A face that can only say one thing: shame.

He shuffles his feet, no more than 15 feet from you, lets out a loud whistle and you catch the pregnant woman waddling back to the car. He backs away, still staring at you.

You reach into your back pocket for your wallet. He must think you're pulling a weapon because he runs across the street to his car. The woman has made her way into the driver's seat and started the engine. You yell out the only thing you can think of.

"Wait!"

You have money in your hand and you step off your porch to them, but they speed away.

The tail lights start to disappear at the end of the block as you stand in the middle of the street with $30 dollars in your hand. The car weaves back and forth down the narrow street. Maybe they thought you were trying to write down or memorize their license plate and weaving would distract you. The car turns the corner and is gone.

And the only thing you can think of is "Boy or Girl".

***

This is not my America.


Tuesday, October 29, 2013

A Horse With No Name




A friend once said to me "Not everything is about autism, Jaye"

I apologized and started talking about a movie or some music or an old friend or something... the entire time thinking in my head: "It is for me"

***

Do you ever feel that your entire life is consumed by your child's diagnosis? How does that present to your friends? How does that present to your family? How does that present to your spouse? How does that present to the professionals you deal with? Are they empathetic? Do they even notice? Do they avoid you?

How does that present to your other children?

***

This past weekend, one of our neighbors was having a Halloween party. Julie had taken Jack and Jack's behavior therapist to Descanso Gardens for the session and I was tasked with getting Jade ready for the party which we would all go to upon their return. Win-Win here. I had three hours to complete a 10 minute task, a morning of college football in front of me, and I didn't have to go to some place with "gardens" in the title!

Even though it's not necessary with her, I started prepping Jade for the party. "Jade, we're going to a Halloween party in three hours. You can put on your princess outfit". Old habits die hard when it comes to prepping your kids.

But Jade started to say "I don't want to go to the party. I don't like Halloween parties. I have stage fright". As adorable as it was, Jade is a bit of a diva. I think she meant to say she was scared of the other costumes, cause this little girl has anything but stage fright.

Odd. My baby girl LOVES parties... especially when she gets to dress up for them.

"Okay. Three hours Jade."

And I turned my attention back to the football game on TV between two teams I couldn't care less about. It only took a minute of silence before I heard her.

"Wanna' play ponies with me?"

The constant din in our house. I turned my head and looked into the saddest big blue eyes. I saw her holding Twilight Sparkle (her favorite) close to her chest and extending Pinkie Pie (who I told her in a dismissive fit was my favorite at some point in time) to me.

And it all came together. She wasn't scared of the party.

She just really wanted me.

The wave of guilt washed over me as I said "sure" and took Pinkie Pie to visit the Crystal Empire and turned the TV off (I could read later that University of Miami came back to win) and Pinkie Pie and I were directed for the next hour or so (I told you she was a diva) through some adventures in Canterlot.

I'll be honest with y'all. It wasn't fun. I'm not interested in My Little Pony.

But, boy did I feel connected to my baby girl. We had one hour together that nobody was directing Jack. Nobody was watching TV. Nobody was working. Nobody was writing a blog. Nobody was dressing for a party. Nobody was making lunch.

Just being there.

***

I am not a perfect parent. I know I spend too much time on Jack and Jade gets hosed for attention. We try to remember this and do things with just Jade.

Why do I want to tell you all this?

Because, as I started the article, maybe I do talk too much about autism. I'm a blogger. I'm a blogger that has opened up my family (and myself) to public scrutiny and silent judgment. A blogger that is trying to share experience to enlighten, educate, entertain or empower.

A blogger who wants you to know that I am indeed flawed. I judge. I bitch. I overreact. Your situation may be better than mine. It may be worse...

But it is yours, and mine is mine.

Everyone that has read this far I would like to give you something to take away from this. To everyone out there, parents and non-parents, friends, families, and strangers...

Never let circumstances encumber you so much so that you stop trying to make yourself a better person.

Isn't that what life is, after all?

Because if I hadn't... If I had just ignored my daughter one more time... If I had just said "later"...

I would miss this:



And Twilight Sparkle might have to find a new Shining Armor.

Thank you, as always, for reading.

Wednesday, October 2, 2013

Who You Are




I start this blog with an apology... I go back and forth between "person first" usage of "has autism v. is autistic". It is a stylistic choice I am making for emphasis. If this bothers you, I urge you to read to the end... where I tell my son who he is today, his 7th birthday.


Jack Capell was born on October 2, 2006. Your mom went into labor on our 1st anniversary (pretty cool, eh?).


Let me tell you about how you got your name...


The first thing you need to know about your name is that we did not know if you were a boy or a girl, so we had planned/picked names for either one.


When you were still in utero, Daddy worked an overnight job at a hotel, so he wasn't home at night most evenings.


One morning, Daddy came home before mommy had left for work and she told him "I had a dream about the baby last night"


Mommy told me she had a dream where she met a little boy who introduced himself as her son. He said his name was Jack and that his daddy had named him. Daddy laughed and said "Were you watching '24' or 'Lost'  before you went to bed" (they both had lead characters named Jack).

Mommy and Daddy both really liked the name. We didn't want something obnoxiously 'different' for you. Jack has been a classic since the 14th century, so we both liked it.

The second you were born, the doctor flipped you over to me to show me your "fruit cup" and I said "It's a boy... right?"... And he handed you to your mama and she said "I knew it. Hi, Jack"


When you were a little boy, and even today, we can't even imagine that you might have had a different name... You were always Jack. I remember we used to call you "The Senator" because we thought "Jack Capell (Ka-Pell)" had that great double K digraph and sounded like power. You were destined to change the world. You were going to take those brilliant blue eyes I gave you and make a difference.

When you turned 3, you got a different name... Autistic.

It was given to you by the State of California, the Glendale Unified School District, and the American Medical Association.

I never liked the new name... It didn't sound as powerful.

***

So, today, my boy, you turn 7. Very soon, you and I are going to have a talk about why people call you autistic. I'm going to use words like "disability", and "NT", and "Sensory Processing". I'm going to tell you that you have autism... and you might get a few new names.

I tell you here, Jack, that none of those things are your names. You are not disabled, less, or even different... you are unique.

You are the powerhouse, endearing, beautiful soul that your mama named you.

Whenever someone asks you "what's wrong with you", or "what do you have", or "who are you"?...

You take those beautiful blue eyes and stare right at them and proudly declare...

"I am Jack Capell"

You're god damned right you are.

Tuesday, October 1, 2013

A Case of You




I am a stay-at-home Dad raising a child with high functioning Autism. I am many other things, but that statement has come to define me. 

Those were the first words I ever wrote on this blog.

Today, however, I want to talk about one of those "many other things" I am. Eight years ago today, I married the coolest chick on the planet.

7 years ago today, the coolest chick on the planet went into labor with our boy (Happy Anniversary!), an event that would change our roles as husband and wife, change our roles as mom and dad, and change our roles as lovers.

We don't have an incredibly complicated or dramatic birthing story... there were some minor bumps, but in the end, it all went well... something odd I remember, perhaps trivial, was that it was raining the day both of my children were born... Odd because it only rains 20-25 days a year in Southern California. As if the Heavens were giving the Earth one last good cleansing before the arrival of my children... decent of Mother Earth.

I digress... Three years later (around his birthday) Jack was in the process of being diagnosed with a developmental delay/disorder... autism. And our roles changed again.

6 months after that, our beautiful Jade was born... and our roles changed again. That's when we decided that I was going to quit my job to be a stay-at-home dad. Jack had some sort of therapy or schooling almost every single day, and it was evident that one of us needed to be there for that.



My wife had the (much better) job that could support the family. My wife is an attorney, a civil litigator, which (according to the movie Clueless) is the scariest kind of attorney. What did that mean to us? Lots and lots of long hours. Or as she sees it, lots and lots of long hours away from her children and husband. Over the years there have been many missed weekends and separate vacations and missed milestones, all in the name of providing for the family. We've talked about it a lot over the years. The guilt she faces. The guilt she feels. The double-standard of society saying "how can you be away from your children", yet if the man was working many hours how he'd be seen as a Hero and great provider. I'll have her write a blog about how she feels about that, and how she handles it, and, most importantly, triumphs in the face of it, because it's not really my story to tell.

So, where am I going with all this?

Today is our anniversary... 8 years. And I wanted to write something to tell her how much she means to me, to all of us. I wanted to write something about how our roles have changed. Something about how we're doing it different than the average family, but it still gets done.

So, since I know she's going to read this, this is what I want to say to my wife... to my bride, to my friend, to my son's champion, to my daughter's heart and soul, to my legal counsel, to my harshest critic, and to the one that holds my pure admiration.

Baby Love, life is a series of choices; some good some bad. Some made by us, some made by others. Our family is the result of a series of good choices, with hopefully many more to come.

I think back to our wedding day... it was beautiful. Everything went perfect. We had so many friends and family there to celebrate our love. I couldn't ask for anything more.

A perfect day, eight years ago. We were so in love and young...

Yet here I am eight years later even more in love with you.



"You are in my blood like holy wine. You taste so bitter, but you're so sweet. I could drink a case of you, and still be on my feet. I would still be on my feet."

Happy Anniversary, Baby Love.


Thursday, September 26, 2013

Never is a Promise





I've been thinking of giving up the blog for the past couple of months. I have. Mostly because I feel I have little to say, that hasn't already been said before (and often times much more eloquently). Let's be honest, there are hundreds, if not thousands, of autism parent blogs... and we all say the same thing, more or less. Every blogger has the "difficulty transition to a new school", or the "stares in the grocery store", or "My reaction to the diagnosis", or the "I hate insurance companies" post... and some of them are amazing, touching, insightful, or simply beautiful... so, why on Earth would anyone want to read me write about the same old things?

So, to my friends and family who know my family, and to those readers that don't, I offer you a story and thoughts that I've never read about before.

A while ago, I participated in debate about what kind of disorder autism is. Is it a genetic disorder? A behavioral disorder? A Social disorder? A Mental disorder? A processing disorder? etc. And the answer is all or any of the above. My friend asked me what I thought.

"Autism, for my family, is a perspective disorder"

Interesting.

Jack does not have the ability to see the world through another's eyes. He lacks empathy (not to be confused with lacking emotions. He has a great and healthy relationship with his emotions as they relate to him). He does not disregard other's emotions (that would be a psychopath), he truly does not even recognize they exist.

There is a philosophical movement for that - Solipsism - the belief that you are the only true being in the world.

If only there was a diagnosis for that... something that meant "self"-ness... or maybe something from the Greek...

"Autism" - from the Greek. Autos - (Comb. form) for "Self" + ismos suffix of action or state.

Selfness.

***

The ability to recognize that other people have their own lives is an important developmental milestone. The ability to know that Grandma is somewhere doing something even though she is not in front of you comes in a typical developing child around 2. Autonomous Beings are indeed that - Autonomous. Around 3, a typical child develops that, not only are there other Autonomous Beings, but they are also Sentient Beings, they not only exist beyond me, but they think and feel beyond me.

Jack and Jade (3 1/2) are playing with the cat. A tail gets pulled and the cat runs away. The 3 1/2 year-old says, "Don't pull Corky's tail. He doesn't like that". A child picks his nose constantly. "Don't do that in class, the other kids think it's gross". A group of bullies laugh at a child's wardrobe, "They're making fun of you for not having any money, and the other kids think that is funny".

These things mean nothing to the child with perspective processing disorder.

I went to a "parents group" meeting for Jack's social skills therapy group on Monday. The founder of the company gave a presentation on Bullying, and what we as parents should do about it... great presentation, btw. It covered what to do when your child is being bullied, and, consequently is the bully. And I asked...

"What about when your child has no idea they are being bullied? I understand if someone is hitting you or doing something physically irritating the desire for them to stop, but what if you have truly no idea that you're being made fun of. To the point that you have no idea you are even entertaining to these misguided bullies. What if you don't have the ability to take their perspective into account?"

Another parent chimed in... "Yeah, what if your child is a psychopath and just doesn't get it"

And the leader responded: "That wouldn't be a psychopath, because a psychopath recognizes others, but disregards them. What you're describing is something we call autism."

***

2013

Autism - noun - a pervasive developmental disorder of children, characterized by impaired communication, excessive rigidity, and emotional detachment: now considered one of the autism spectrum disorders.

(Courtesy of Dictionary.com)

1912 (when coined by Swiss psychiatrist Paul Bleuler)

Autism - noun - Self-ness.

Did the ancient Greeks and turn of the century Swiss have something figured out?

***

In today's world, autism means so many things. As it works today, autism is not really a diagnosis... it's a collection of presentations of any developmental delays or disorders coupled with poor social skills.

In 1912, it meant self-ness.

***

 Jack may never have the ability to take another perspective. He may never understand why he is being bullied. He may never know why a boss or teacher does or doesn't like him. He may never know why a friend likes him or hates him. He will probably never have to endure cattiness or petty arguments or understand passive-aggressive silent treatments.

But he may also never understand how much I love him. He may never understand what I've given up for him. He may never understand how proud I am of him.

And that breaks my fucking heart.

***

On Saturday morning, I took my baby girl to a birthday party and Jack stayed home with mom. I got a phone call from Jack. He needed to tell me about the dream he had. He told a different story of his dream to his mom, but the plot points were the same... the important stuff.

"Daddy, I had a dream where we went on a roller coaster, and then we went on it again, and then you got mad at me so I went on it another time by myself and I fell out and got hurt because you were mad at me and you didn't protect me."

And finally...

"Daddy, are you mad at me?"

***

It's in there. Jack, at least subconsciously in dreams, knows that I can get mad at him. He knows that if I am mad at him, I treat him differently... my perspective, not his.

And he knows that I protect him.

And he knows that I can take that away.

And that breaks my fucking heart.

***

But he knows! Jack has the ability to learn, to develop, to retain information, he has a healthy relationship with his emotions, he is one endearing little fellow. Since Monday, I have drilled perspective taking into this boy. Every conversation is followed with "how does that make him feel?"

And last night...

"Jade, don't bother the cat. He's relaxing and you don't want to make him mad"

Is it a true understanding of perspective taking, or rote repetition?

Does it matter? That's  your perspective.

***

They say Jack will never understand perspective taking.

But "Never is a promise, and you can't afford to lie"

We'll keep working on this, my boy. We'll get there. I will never stop fighting for you and, together, we will open the firmament.

And then, you will know how celestially proud I am of you.



If you made it this far... I thank you eternally for reading.

Thursday, September 5, 2013

I am a Rock




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.