Wednesday, January 6, 2016

Hello, World. My Name is Jack and I have Autism

On April 26th, 2012, I started this page with this simple post:

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.

It has long since been my goal to coax Jack into writing this with me. Almost 4 years later... That day has arrived. 

First, a little history and backstory. I told Jack about "Find My Eyes" about a year ago. He was quite uninterested. And even less interested in me sharing his story (our story) with the world... or at least the small corner of it that read the blog. He also "gave me his blessing" to continue to write, even read a post or two, and continued to be uninterested.

In our house, we recently had the autism talk... at least the one that stuck with Jack. If you didn't read that one, I urge you to take a moment to read it here. It will make a lot of Jack's post make more sense if you read where we are coming from in the explanation of how autism affects Jack.

***

Today is the last day of Winter Break for our school district and we were tasked over the holiday to simply "keep up reading and writing" as homework. This Winter Break has been groundbreaking for us. Jack is really latching on to the idea of Autism being a perspective processing disorder (an explanation I made up). He is taking the time to think about how he is being perceived when I prompt him with "Jack, perspective" or simply "Jack, OPP". 

So, this morning I asked him if he would write a blog for me (and all of you) for his daily writing assignment. He first refused, then after I gave him a few choices of other topics, since he had to write something... he relented and gave us this magnum opus.

I present to you a photo (to prove he wrote it himself) and I transcribed it to the blog. I was planning on putting in an editors note that I corrected any spelling errors, but there were none to correct. So, any syntax errors remain and will not have the usual (sic) demarcation.

I asked Jack to answer the following question: "How does Autism and perspective affect me?", and wrote it at the top of the page. I instructed him to answer that question in 5 or 6 sentences. 



This is what Jack wrote for us.

The way perspective affects me is that when I don't take meds I go out of control and when I take meds it helps me control myself. My perspective is that when I take my meds I feel like I could puke\vomit. My perspective is that in school I have trouble focusing. My perspective is that I like to be left alone. My perspective is that other people see me annoying. My own perspective is that i'm not smart. My friends perspective is that they find me a good friend. My teachers perspective is that she finds me a good student. My perspective is that I miss my friends.

***

And that was it.

***

That was the most insight I have ever received to Jack and his ability.

I want to say a few things about this before I I share how we discussed this first. Jack is referring to the action of "taking his meds" when he mentioned puking or vomiting, not the way they make him feel (he has "gagged" on the pill from time to time).

What Jack wrote demonstrates that the idea of "perspective" is still something he is learning about... and working on masterfully.

***

I told Jack how much I loved his essay and asked if I could share it with the blog. He told me it was terrible and nobody would want to read it. 

I told him that I can only guess (or take my own perspective) of the way he thinks and feels and everyone that reads about him would love his insight. "They want to hear about you from the horse's mouth"

Then I spent a few minutes explaining what "from the horse's mouth" meant... A conversation that he quickly concluded that if he was the horse's mouth, then I must be the opposite... the horse's butt. I explained that it's usually called the horse's ass, and that wasn't quite the conclusion of the idiom explanation I desired, but it was correct.

He said "okay" to share it.

Jack still wanted to know why this was so important? Why would people care so much? 

I told him the story of Pandora's box. I told him that once the "box" was opened, all of the information that had been repressed and hidden from the world was available again. All of the mysteries of life, the good and the bad, were "back on the table". I told him that by him telling me about himself, I could gain a better perspective of how he thinks, and feels, and dreams, and wants, and fears, and detests, and combats... and hopes.

"You see, son, Hope was let out of Pandora's box as well. Before she opened that box, the people had no hope in their world"

"Dad, hope is a good thing?"

And, I instantly scripted from The Shawshank Redemption...

"Maybe the best of things."

And I was given permission to open his voice to the world with a simple one word answer:

"Cool"

Yes. Cool indeed.




Image - Jack at the Culver City Film Festival last month where he saw a friends' short film. I think this picture looks quite "authorial"


Wednesday, December 16, 2015

The Talk

How do you explain to your nine year-old son that they have autism? How do you convey what autism is, when even parents, and doctors, and scientists, and autistic adults themselves disagree? What do you (or did you) say?

I have planned this conversation dozens of times, and dozens of ways.

And, as fate would have it, I had to wing it.

***

This morning was a strangely hectic morning getting the kids ready for school. There had been a bomb threat that closed Los Angeles Unified School District for the day for about 650,000 students (yes, 650,000). Although our school is in a neighboring district and our district was NOT closed for the day, I was desperately trying to get information on the situation. So, I had the local news on.

I was scrambling to get the kids out the door when Jack broke the silence with a simple question:

"Dad? What's autism?"

"Where did you hear that, Jack?"

He pointed to a segment on TV that had the title Anti-Depressants and Autism printed on the bottom of the screen.

"Well, Jack, Autism is a different Neurology... A different way a person's brain works. Do you know anyone who has autism?"

"Jade! Jade has autism! Her brain works differently"

From the other room I hear "No! I have epilepsy! I take etho-suxi-mate (we're working on the kids learning the names of the meds they take right now). You have the autism!"

"No I don't. The TV said it affects babies. I'm not a baby."

"Well, Jack, it's true, but babies grow up, don't they?

Jade comes bounding in to the room.

"Jack, I have epilepsy and you have autism. We're both different."

A quick sassing of "my neuro-A-typicality can beat up your neuro-A-typicality" that only brothers and sisters can do ensued. Then Jade finished with a line I have heard her say before:

"It's okay, Jack. Different makes us beautiful."

I think she learned that at school (which is a lesson I am eternally grateful they spread, btw).

But, my friends, I cannot write words that would accurately reflect the way a parent feels when a 5 year-old gets it. When a 5 year-old both schools and shames an entire Western Culture regarding disability status because her whole life has been inclusion. In one sentence, she just said "who the fuck cares" to the entire world.

Then, holding true to her fiery red-haired nature...

"Well. It makes me beautiful. I guess it makes you handsome"




***

Well, that was a touching story, but I promised to tell y'all how "the talk" went. 

So, here it is. 

If anybody is reading this gathering ideas on how to have "the talk" with their child, one caveat: Take my story as just that... My Story. 

And my advice? Be specific. 

So I had a few seconds to gather my thoughts as Jack and Jade stumbled into the car and I knew I would have to explain a few things on the 10 minute drive to school. I had been fearing and planning and, frankly, anticipating this moment for the last 4 or 5 years. The anticipation came in that Jack is old enough and expressive enough to give me his perspective. I had been looking forward to that.

I had just a few moments to plan what I wanted to say... but I was/am well-versed in autism.

I knew that Jack would only be confused if I started giving him the DSM-V definition of autism. Not because it's beyond his comprehension, but because so many of the attributes no longer apply. Let's not fool ourselves here, the DSM-V definition of autism is broad. 

If any of you reading know Jack now, would you believe me if I told you that the reason we had Jack assessed in the first place was because he DIDN'T talk? If you know Jack now, would you believe that he NEVER made eye-contact? Would you believe that he was a wall-walker, a tippy-toe walker, and flapper? Would you believe that he would never try new foods? Would you believe that he would go for days at a time without pooping? Would you believe that he hated the sound of the hand-dryer in bathrooms? Would you believe that he couldn't read or write or even hold a pencil? Would you believe that he had a verbal tic? Would you believe that his initial school assessment placed him in special ed? Would you believe that my wife and had our only really good fight ever about that? In the parking lot at Vons (local grocery store) no less? Would you believe there was a time that we even asked ourselves if Jack belonged in a full-inclusion classroom? 

Would you believe?

If you read my blogs, I've often quoted advice I've received or professionals that have championed Jack. And I'm reminded today of his pre-school teacher when she said, at the follow-up to that initial IEP meeting, to a room of knowledgeable professionals, and two teary-eyed parents with differing views on placement:

"Jack belongs in general Ed. He belongs."

Thank you, Ms. A. 

Why did I tell you all of that? To give you some perspective of where Jack is now. Remember that word... perspective.

***

It is possible, even likely, that at our next triennial IEP assessment, Jack will lose his Autism diagnosis for school services. He just doesn't have the developmental delays/disabilities that make up 3/4 of the criteria anymore. 

So I can take a moment and say "How dare they misdiagnose him" or "thank god for early intervention".

But not scoring high enough (or low enough) on the school assessment has nothing to do with him having or not having autism. Jack still has the biggest deficit of autism there is, the deficit for which the disorder is named:

Autism (n) - From the Greek for autos (self) and -ism (state of being).

Self-ness.

Jack is still unable to take another's perspective.

***

We climbed in to the car and I turned the radio off.

"Jack, do you know how autism affects you?"

"No."

"Well, Jack it's very difficult for you to take another's perspective. That means putting yourself in somebody else's head. Reacting to what they think, what they perceive. Do you understand that?"

"No."

"Let me give you and example..."

"I can take perspective!", Jade chimes in.

"Okay, let's try this. Jade if you bring a bug in to your class and show it to your friend Sally, what is she going to do?"

"She would probably scream. She doesn't like bugs"

"Right. Now Jack, what about you? If you bring in a bug and show it to your teacher, what would she do?"

"What kind of bug?"

"It doesn't matter. A rolly-polly"

"Why would I pick up a rolly-polly? I don't like bugs, so why would I have one to show my teacher?"

"That's not the point, Jack. How would the teacher react?"

"Where did I find this rolly-polly? Was it already in the classroom?"

"This is exactly what I'm talking about, Son. I want you to think about that. Try to think about how someone else is going to react to what you say. Remember that other people have their own view of you. Remember the difference between autonomous beings and sentient beings?"

"Sentient beings have feelings," said Jade. She needs to stop eaves-dropping.

"Yes, Jade. That perspective-taking is how autism affects you, Jack"

There was a palpable contemplative silence as I parked the car.

"Dad, does autism give me all the crazy ideas I have?"

"No. That's your creativity."

"Dad, does autism make it hard for me to keep friends?"

 A lump grew in my throat.

"Yes, son, it does."

And I wondered if I should have lied. I wondered if I should have never said anything. I wondered if I should have played the 'ask your mother' card.

"But, Jack, you know what? You're a pretty hard-worker and we can work on this."

"Cool."

Yes it is, Jack. Cool.

***

That was it. The Talk.

But, of course, there's more. Last night and today I decided to hold true to my word and help Jack with taking "Other People's Perspective" or, as we now call it in our house, OPP.

So, tonight, Jack's sister had fallen asleep already and he was hopping around playing an imaginary Survivor type game with his cars being eliminated from the island.

He was talking very loudly about how this car had been eliminated and I simply said:

"Jack, your sister is asleep. Talking loudly might wake her up and how do you think that will make her feel?"

Jack prattled loudly on.

"Jack, you down with OPP?"

"Yeah, you know me"

Enough time to think about it passes and finally Jack whispers "Dad, do you want to see who was eliminated"?

Son-of-a-bitch. It worked.

***

As I re-read this blog, I am embarrassed to admit that I just laid out all the times and skills that I feared Jack would never accomplish.

He has proven me wrong on all of them.

Perhaps I am the one that needs to take a new perspective.

But there is something so wonderful this time. I am certain we will work on this together. There is no limit to you, my son.

I could not be more proud of you.

I, too, am down with OPP.

Yeah, you know me.




Friday, November 13, 2015

Holy Crap, We're Curing Intellectual Disability (or How I Learned to Stop Worrying and Love the New 1 in 45 Autism Diagnosis Number)

In March of 2014 the CDC officially lowered the number of children affected by autism to 1 in 68. I wrote an article about that here.

This morning, a year and a half later, the CDC released their findings from a new survey study with the alarming finding that the number was now 1 in 45. Close to another 30% increase. In just 3 years!!!

Here is the new study. Go ahead. Read through it. Pretty dry stuff, right?

There are some interesting things in there. A lot of focus on the "questionnaire/survey" methodology. A lot of explanation of how reversing the order of two questions made all the difference to get a more "realistic" number.

But one thing is for certain, regardless of how we get there, the prevalence of autism in children ages 3-17 in this country is indeed closer to 1 in 45.


This is a graph from the actual report that I know you all read through. I took a screen capture to save you the time. You're welcome.

Do you notice anything funny about it? Funny strange, not funny Ha-Ha.

***

Autism is without a doubt a "spectrum" disorder. No single autism presentation is the exact same as another.

Everybody knows that.

But what IS autism?

There are ZERO genetic markers for autism. There are several commonalities. Over 100 listed. To this day the most common genetic commonality of autism remains Fragile X syndrome. If you combined all known seizure disorders and epilepsy, that would be number one, but as it stands today... Fragile X Syndrome.

So, we should ask a geneticist. Their answer would be, we can only find commonalities.

No, autism is a separate neurology. So we should ask a neurologist. Their answer would be, we can only treat some of the commonalities of autism. We deal with seizures. We deal with neurological disorders. We can map those. EEG and brain imaging technology has come a long way. But that's more effect than cause when talking about autism. Autism doesn't look like anything on an EEG.

No, autism is a psychological disorder. We should ask a psychiatrist.  "Poor social skills" is essential to a diagnosis, and that's all theory of mind stuff, right? Their answer would be... we don't have anything to treat autism specifically. There are some great medications to treat some of the presentations or comorbidities (yes, that is really the word we use) like ADHD, OCD, or general anxiety, but we're not really sure what autism is with any uniformity. In fact, we keep changing the diagnostic manual we use to recognize it! With every update to the DSM, we include a little more.

No, autism is an entirely different state of mind... a transcendence if you will. So we ask a philosopher. And they would say autism is Greek for "self-ness", much like the philosophy of solipsism... a belief that you are the only being. You are unable to take the perspective of another, because there are no others. Not like the psychopath who chooses to disregard the perspective of others, nor the sociopath who lives by an entirely different set of rules of right and wrong, but a complete inability to recognize that others are autonomous and sentient beings in the first place.

WHAT!?!?

***

Autism is just as much a mystery today as it was in the 40's when Kanner started diagnosing it, when Asperger started defending it, and Lovaas started treating it.

We have come a long way in recognition. A long way in treatment. A long way in awareness. A long way in acceptance. And a long way services available.

Sadly, we have gone the opposite direction in what might be the most important category - definition.

***

The reason I wrote this article tonight, while citing the newest CDC report that raises the prevalence rate of autism to 1 in 45 is two-fold.

A 30% increase is alarming. Is there an autism explosion is in this country?

No. Remember the graph I copied for you? Do you notice the last set of bars? The set that shows virtually no change (okay, a .01 variant change) in the number of cases that identified themselves (or their children) as "any of the conditions"?

So, at least from one study to the next, there is an explosion in diagnosis only.

I could have used the click-bait title of "Holy Crap, we're curing Intellectual Disability"...

And been, from an analytical point of view, 100% correct.

We are merely transferring diagnoses.

***

This article is not meant to anger or shock anyone. Quite the opposite, in fact. The explosion in diagnosis is a good thing. It brings more services and awareness and therapies and inclusion and compassion and research.

It should put minds at ease that there is no "autism explosion" in America... perhaps a re-grouping explosion, perhaps a definition explosion, perhaps an awareness explosion.

We shouldn't stop looking for environmental factors that contribute to these new numbers. We shouldn't thumb our noses at the Neurodiversity movement. We shouldn't ignore commonalities or comorbidities. In fact, quite the opposite, we should explore all of them even more. We should ask more questions.

What we can't afford to do for our country and our children is simply label our youngsters "autistic", throw our hands up in the air and say "that's that". Better start ABA therapy and cancel the geneticist, psychiatrist, neurologist, and physiatrist because autism is autism and there's a clear path.

We should never stop asking questions.

Nothing is more marginalizing than apathy.

***

If you made it this far, you might be scratching your head. You might be yelling at your screen. You might be yelling at me:

"Who the hell does this guy think he is!? He's no scientist, physician, or even analyst. I'm sticking to my guns on XYZ causing autism and that's that. If only someone like the CDC did a study confirming this 'transferring of diagnosis' I could get on board".

Oh, wait. They just did. You can read it again with this in mind here.

Or, you can read the 2010 study that lowered the number to 1 in 68 here

***

I end this the same way I ended my article from March of 2014.

Never stop asking questions.

Definition ---> Cause ---> Prevention ---> Cure

You can't work backwards in a logic chain.


Thank you.

Monday, July 6, 2015

SB277 - Mandatory Vaccines And The Loophole That Makes Everyone Happy

Last year (2014) there was a measles outbreak that traced "patient zero" to The Happiest Place on Earth, Disneyland, in Southern California. California scrambled to find an answer to the question of how a mostly eradicated disease could possibly be so virulent to infect hundreds of patients in a mostly vaccinated society. This lead to weeks of debate about the pro and cons of vaccines, the possible autism link, the "dangerous" ingredients and subsequent "cover-ups" done by both the government and Big Pharma, the real risk of measles, and even our ability to govern our own health and bodies... "It's those damned Anti-vaxxers" vs. "You're poisoning the children! (Insert hand-wringing) The Children!"

Whatever the cause, or the fault, it was determined that California had fallen below the "herd immunity" threshold. Herd Immunity is a theoretical percentage of vaccinated population that is high enough that an outbreak will no longer spread... or at least become pandemic. I've read 90%, I've read 80%, it doesn't matter which is true as that number is theoretical anyway. Herd immunity thresholds, in statistics terms, could only be a lagging indicator, because you won't know where it needed to be until there's an outbreak.

We (I am a Californian) needed to do something and since vaccines had long been the responsibilities of the schools (and daycares) SB277 was introduced to the State Legislature.

SB277 in its entirety  passed and was signed into law last week.

What's new about SB277? There's really only one important thing to know... it no longer allows exemptions based on "personal beliefs". From this point forward, only "medical exemptions" will be allowed. California would be joining West Virginia and Mississippi with the strictest vaccination requirements in the Nation.

On a side note, some States have, or have had, "religious belief exemptions"... California did not, however, they fell under personal belief exemptions.

So, what is/are/were those personal belief exemptions that were "ruining" our State? Good question. I am enrolling my daughter for Kindergarten next year and had to go through the rigmarole of paperwork it requires. My daughter is fully vaccinated (she's been in pre-school) but I still need to prove it with a doctor's report. So this year I examine the form... the blue one in California, and make an appointment with her doctor to fill it out. $15 for any form filled out through our insurance. No problem. Have to have the original signed (no photocopies), so I have to drop it off, or mail it. No problem. It takes up to three days to get it back, but that's okay, too. I have time.

Or...

It's right there on the back. A little box that says "personal belief exemption". I could just check that off... not even initialize it and avoid all this back and forth (and $15).

So, to claim a personal belief exemption, I just have to check a box? Don't I have to plead my case? Don't I have to bring in pages and pages of documents proving the harm of vaccines? Don't I have to recite a Holy Prayer to prove it's against my religion? Don't I need to bring in paperwork to disclose my daughter's immunodeficiency?

Nah. Just check that box.

I can't be the first parent to think of this.

***

I get asked a lot about vaccines. My son has autism and I am a writer, so friends and family and neighbors and strangers often ask me what I think about the safety of vaccines. I am not, however, a physician or research scientist. The information I can give you comes from those professionals.

I can, unequivocally, tell you vaccines did not cause OUR autism. I can also, unequivocally, tell you that OUR autism is nowhere near miserable, hopeless, or worse "than the slight risk of potentially catching what might someday come back as an historically viciously deadly disease".

Others disagree with those two issues.

I first heard of SB277 from a friend asking me what I thought about vaccines. It was being introduced (maybe February) and the friend that told me about it  pitched the bill as follows... "They're introducing a bill in California that only allows medical exemptions."

I thought, cool. Putting public health concerns in the hands of health professionals. I dig that.

And I didn't think about it again.

***

So, who are the exemptions in my State? Certainly the children with allergies or compromised immune systems that could suffer serious harm from receiving a live vaccine. Certainly the anti-vaxxers. They've got proof that their science is better than yours. Maybe the parent like myself in the above scenario... but that would be a vaccinated child posing as an exemption purely because I'm lazy.

Do those groups really account for the 10-20% of exemptions in this State?

***

That leads us to who is this bill really for.

How many children in this State have never been to a doctor (outside of an ER or Urgentcare) at Kinder enrollment? How many parents missed an appointment? How many thought it was too much money? How many simply had no idea we vaccinate? How many single parents couldn't afford to take a day off work for this? Much less three? Up to 10 if you want to space out those vaccinations.

And how many of those parents picked up their enrollment packets, saw the blue form, said "what does this mean?", realize they have to wait 3 years to catch up on a proper vaccine schedule to enroll their child...

Or they could just check that box.

But the anti-vaxxers and the sickly are the guys to blame. We can't possibly point the finger at the poor, uneducated or lazy. Not in California!

Maybe we need a better public outreach program. Maybe we need a way to reach ALL of our State. Maybe we need an advertising campaign about the importance of vaccines. Maybe this really is a public health issue and not a school issue after-all. Maybe, just maybe, you should counsel a physician on vaccines instead of bloggers.

How can we get these parents (and kids) to those health care professionals?

It's called SB277.

***

Here is a copy of the letter Governor Jerry Brown wrote to the State Senate.


What Governor Brown wants from this bill and from our schools and from our State and from our parents and from our Health Professionals is awareness. In his own words, medical exceptions exist "when a physician believes that circumstances - in the judgement and sound discretion of the physician - so warrant"

There is no list of what qualifies as a "medical exemption". Your Doctor doesn't believe in vaccinations? Bam, medical exemption. Your Doctor believes in delayed schedules? Bam, medical exemption. Your doctor thinks it's risky to your child's immune system, even though your child does not have recognized immunodeficiency? Bam. Medical exemption.

It was and is (in Brown's own words) - left purposefully vague.

What I like about this bill, personally, is that it is putting the responsibility of a public health issue back in the hands of health officials. Quite simply, you can still opt out of vaccines, but you need to prove you spoke with a physician about it.

Even better news! The ACA requires all Americans to have health insurance so you can no longer say I couldn't afford to go. But wait, there's more, California also quietly passed a mandatory Paid Sick Leave Act for ALL employees (it went into effect July 1st), so you can no longer say I couldn't afford to miss work to take my kid to get their vaccines.

Putting a public health issue back in the hands of health professionals...

I like the sound of that, Jerry.

***

There is something deeply disturbing about this bill, too. The punishment for not vaccinating your child is mandatory homeschooling. Can you imagine if this was carried to execution of said threat. One of the greatest undeniable civil liberties of this entire country (California included) is the right to FAPE (Free Appropriate Public Education) for EVERY child.

Autonomy of your own Health Care and body is debatable as a civil liberty in this country (at least regarding who is going to pay for it).

Free Appropriate Public Education is an undeniable civil liberty. Even mandatory in most states. We are one of only a handful of countries that educate EVERY child, including the very poor, the disabled, and immigrant populations.

We are the only country in the world, that does that for free.

And I am pretty damn proud of that.

Imagine a child denied that right because of what may, or may not, be a public health issue? Imagine a punishment that does not fit the crime of a parent(s)?

If homeschooling were a serious threat, every school district had better be prepared to pay for said homeschooling program, oh, and for the salary of the parent that stays home to administer it.

I will not allow undeniable civil liberties to be taken away from any child in the name of agendas.

But I doubt that will happen. As said before, I think the intent of this bill, now a law, is to get more kids to the doctor.

I don't really see many "real" expulsions from the State via the school district.

And the ACLU agrees with me.

I look at this law like the jury duty law. You can go to jail for ignoring a jury summons. It says so right on the pamphlet (even cites the law). But in the searchable arrest records database, Los Angeles County (the largest County in California)... there are 0 arrests for ditching Jury Duty.

The punishment (of the child) does not fit the "crime" (of the adult) here.

***

In the end, it doesn't matter what I think. I'm just a dad thinking out loud here. I can listen to the shouting of either side about the harms of vaccines versus the benefits. I can choose to believe whomever I want.

I have that right.

But I probably shouldn't make that decision without the input of my child's pediatrician.

And Jerry Brown wants to make sure I had that conversation.

Putting a public health issue back in the hands of health professionals...

I still like the sound of that.

Friday, June 19, 2015

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.

Tuesday, June 2, 2015

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.






Tuesday, April 21, 2015

Till Human Voices Wake Us

I overheard a conversation the other day between Jade and her babysitter. I only caught the tail end, but it was lovely.

Dee: "Well, Jade, if Dee could be in two places at once, that would be a wonderful fantasy world"
Jade: "And there would be an octopus!"

I still smile every time I think of this. The thought that the idea of Jade's fantasy worlds automatically contain an octopus delight me. I imagine he is a friendly octopus. Perhaps with a British accent. Maybe he wears a top hat and monocle. A top hat that magically stays on his head under the sea. He is probably purple. Maybe pink.

***

This morning Jack woke up in a mood. He was excited to tell me about his dream. He prattled on and on about he and his classmates being chased from a haunted house by dozens of snakes. This is not unusual. Jack is pretty interested in both snakes... and his classmates.

One thing that we have been working on with Jack is better pragmatic speech skills. Pragmatic speech (put simply) is how to have a conversation, turn-taking, when to STOP talking, etc. Jack has a tendency to repeat himself over and over again. When I talk to him about it, he claims it's because he wants to make sure he was heard.

EXAMPLE

Jack: Dad! Fantastic Four was Stan Lee's first series. He wrote it in 1967. He was his first series. He was the first writer to write about them. It was the Fantastic Four. They were his first. It was 1967. They were definitely his first.

(I have no idea if that is factual)

The newest approach is to "cut-him off" after a complete sentence (or thought) to do two things 1) acknowledge that I heard him, and 2) Ask a question that furthers the conversation in a different direction to avoid repetition.

Ideally, it would look like this:

Jack: Dad! Fantastic Four was Stan Lee's first series.
Me: Wow. That was his first? What year was it?
Jack: 1967, He wrote it in-
Me: 1967 was a long time ago. Did he draw the pictures or just do the writing?
Jack: I don't know.

Wouldn't that be fantastic? Wouldn't it be a wonderful world if I had the patience to do that every time? With every conversation? Day after day? Week after week? Month after month?

Because often those conversations end with...

"I already heard this part" or worse yet, "stop talking"

I openly admit, that I eventually have enough of being on my "A" game and will literally "silence" my son.

And that may be the worst thing you can do to any child.

***

This morning, however, I was on my game. I Jumped sentences correctly. I validated narrative. I furthered the story with leading questions.

Most importantly, I enjoyed the story. Sure, the hero's journey was incomplete, the imagery was sloppy, and there was a little too much deus ex machina for my taste, (a little writer humor for you) but Jack told me an entire story. In a proper way.

Now, I was trying. I was making the best effort I could to "guide" the conversation.

Son-of-a-bitch, that approach worked.

I half expected to see Jade's purple octopus come by.

***

Jack, I pledge to work on this with you. I respect your voice. I am a writer myself. I write blogs about you, and me, and Jade, and your mom, and your sitter, and your grandma, and your cat, and your imagination.

This is the medium I have chosen...

Perhaps, if you've read this far, because nobody can silence me.

I know you have taken to journal writing. You have notebooks upon notebooks of your innermost thoughts and plans and fantasies.

Do you want to know a secret?

I have read every single one.


And you have a voice worth sharing.

***

I, too, once dreamed of the sea.

"We have lingered in the chambers of the sea
By sea-girls wreathed with seaweed red and brown
Till human voices wake us, and we drown."

(T.S. Eliot)

***

Thank you for reading.