Wednesday, July 16, 2014

Unexpected

I played football in High School. I was terrible. During the Spring practices one year, I split my hand open and left a scar that goes about 4 inches down each side of my left hand between my two middle fingers. I was out for the rest of the Spring.

The coaches didn't mind much, but the orchestra teacher was PISSED.

They had lost a seldom-used 3rd string Tight End, but Maestro had lost his all-state first chair viola.

***

We didn't know if Jack was a boy or a girl until the minute the doctor flipped him up, showed me the fruit cup, and stared blankly at me for a moment.

"It's a boy" I exclaimed.
Followed by "Right?"

***

So I found myself with a son. Cool. Someone to drink beer with. Someone to throw a baseball around with. Someone to drive me to the racetrack in my dotage. Someone to carry on the name. Someone I could understand.

I'll be forty this year. Since I moved away when I was 21, every year I make the trek back up to Fresno (yes, THAT Fresno) to take my dad to a Fresno State Bulldogs football game (or two). We show up early, cruise the tailgates looking for free beer or tri-tip, and talk Bulldog football. On a sidenote, we NEVER find that free beer or tri-tip. It always goes the same way, my dad will tell me he's well-connected and we'll bump into someone he knows and get to hang out... but we never do. 20 years of not knowing ANYONE!!! So, if anyone is reading from Fresno, we're coming to the Nebraska game this year. If you're having a tailgate, we'd love to drop by.

But what my dad doesn't know is how much I enjoy that time. Maybe he does know. We usually just walk around talking for an hour or so and then watch the game.

Sometimes, my brother will come with. Sometimes a random friend. But it's usually just the two of us.

And those are still the best Saturdays of my life.



***

In the fall of 2008, The University of Wisconsin played against the Bulldogs in their home opener. We were there. We witnessed the Bulldogs freshman kicker miss 3 field goals in a 13-10 loss. It was wonderful. And I said to my dad, hey, I can't wait to bring Jack next year. He was almost 2 at the time, but I saw a lot of three year-olds there... maybe next year. I couldn't wait to share my favorite experience with my dad with my son.

Maybe next year.

***

Jack was diagnosed next year.

Maybe next year.

***

2010-2013 were more of the same. First, Jack has absolutely NO interest in football. He has even less interest in crowds, noise, and fanaticism.

This year Fresno State opens its schedule against University of Southern California. Here in Los Angeles. We are getting our tickets together and I find myself saying the same thing about bringing Jack...

Maybe next year.

***

I don't think this is autism specific. I'm sure all parents are a little disappointed, or "let-down" when their child has no interest in participating in something that is so dear to you. I truly envisioned walking with Jack (when he turns 21, of course) at the tailgate parties trying to find free beer. Maybe even with his son.

Instead, I try to get into his world. Maybe we can make his own memories of time with his dad. I will be the first one to laugh his ass off when his son says "Dad, I don't want to play Minecraft with you and Grandpa." or "I don't want to have another Light Saber Battle".

And I'll be a little bit sad, too. I'll know how much Jack wants to spend time with his boy the way he did with his dad.

Autism didn't take this from me.

Life did.

But I'll get to keep what I love. On August 30th, my dad will come down to Los Angeles. We'll leave for the game an hour early or so because I'll tell my dad that I am well connected in Los Angeles... and we won't find any free beer.

My dad will ask the same question he already knows the answer to: "What about Jack?"

And I will smile my usual smile and give my usual answer: "Maybe next year"

***

Or will I?

Because, in the wise words of Master Yoda that Jack has made me repeat a thousand times...

"There is another"


Monday, July 7, 2014

Give a Little Bit



There's a good story going around the US right now about a little girl that was attacked by a dog and then refused service at a KFC (Kentucky Fried Chicken) restaurant in Jackson, MS. The story goes that she was asked to leave because her appearance was "disturbing" other customers (or something like that). KFC claimed no knowledge of the incident and couldn't even find any evidence that she ever entered the store through their own internal investigation. It was deemed a hoax (still pending, of course) and the story was mostly dropped and will soon be forgotten.

When the story was still hot, however, a donation page was established. The page was seeking donations for corrective surgeries and potential legal costs (among other things). That page raised 138 thousand dollars... including 25 thousand from KFC themselves. The page has since been disabled and final numbers are unattainable.

The public cried out "What terrible people", "how could a family use a little girl's disability or disfigurement to make money?" "What is wrong with this country?"

According to the story I watched on the "Today Show" the family had offered to refund any donations made to their cause.

***

Autism Speaks is a juggernaut among charities. They raise millions of dollars (MILLIONS) every year through their walks and other fundraising efforts.

Yet, about a year ago, in an attempt to secure autism funding through congress, founder Suzanne Wright wrote a scathing "speech" in which she painted the autism community as helpless, at the mercy of these "terribly disabled" children, and how "autism tears families apart."

The public outcry began again. "That's not my autism", "How could she hate children so much?" "They don't speak for my family" "That's not my experience".

Their financials were released a few months later... "They spend so much money on their board member's salaries" "They fund such stupid studies" "I've never received a penny from them... or any services" "Look at how much of my money they spend on their legal defense!"

And finally, "They don't have any autistic adults on their board."

An underground movement to boycott Autism Speaks began.

***

Yet, Autism Speaks is still receiving record donations.

Yet, few people (including KFC) actually did take their money back.

***

Charity.

- noun "something given to a person or persons in need; alms"
(alt) - noun "leniency in judging others; forbearance"

***

The four Cardinal Virtues from ancient Greek philosophy are prudence, justice, temperance, and courage. The three theological virtues from the letter of St. Paul of Tarsus (combined make up the commonly know "seven virtues") are faith, hope, and...

CHARITY

***

The concept (or virtue) of charity is not uniquely American. But no country exemplifies it more. To any foreign readers, did you know that the US actually has limitations and rules written into our tax code to regulate charitable donations? Whenever there is an international crisis, the average US donation (cash only, not including services) is 800 percent (8 times) that of the next leading country? Often to our "enemies". Did you know that the household average in the US for charitable donations is 5-10% of your annual income... regardless of that level. From buying a muffin at your school's bake sale, to building a hospital. Americans give. Corporations donate closer to 15%... and often run their own charities!

The cynics out there will say "well, the US can afford it" or "The wealthy only do it for a tax shelter" or "corporations only do it to funnel money back into their corporation" or "charities never give me anything, so why should I give to them"

The truth is that there are some illegal uses of charities. It does happen. It is also illegal and prosecuted (if necessary)... and extremely rare.

Some people (many) were "duped" into donating to help a little girl get a corrective surgery because KFC denied her service.

Some people (many) are outraged that Autism Speaks doesn't have any autistic adults on their board, pays their board too much, or doesn't speak for them.

Yet, the donations pour in.

Autism Speaks' mission statement is "At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders."

The donation page for the KFC story (not really an official Mission Statement) aimed to "raise money for corrective surgery and legal funds for a little girl."

And so, so many people did.

If you gave $5 to either cause, if you gave $25k to either cause, you did it for the right reason. You did it from your heart.

I remind you, once again, an alternative definition of charity:

leniency in judging others; forbearance.

***

The US has difficulty defining its culture, sometimes.

We are excessive.

What is "American Pizza"? more meat and more cheese.
What is an "American Car"? Bigger engine. Bigger body.
What is an "American grocery store"? More products. Bigger displays.

The United States did not invent the concept of charity. It's one of the seven virtues, for Christ's sake (pun intended). But, from many different cultures and countries, we brought it here, made it excessive, and made it our own.

Keep giving. Find a charity or cause with a mission statement you agree with. Give your Starbucks to the homeless guy outside. Volunteer at your school. Build a hospital.

Keep up the good work, America. It's your patriotic duty.

Wednesday, June 11, 2014

Father and Son


This year was our triennial IEP. In California (and most states) the triennial (every three years) IEP is used to establish eligibility for services for the next three years. They usually involve a "re-assessment" to determine future eligibility... remember when you first had your child enrolled and they did all those wacky and seemingly useless assessment tests? Well, those are all done again. Hopefully, you get a great benchmark of how far your child has come in three years...

Sometimes you get the opposite.

***

We received our triennial assessment report about a week before our scheduled IEP. It was very thorough. It was very well done. It was very accurate. The reports (from the school psych, teacher, speech, OT, and district BCBA) were all done by professionals that knew Jack. They were his teachers and therapists, not someone in a faraway office.

They were very accurate. Julie and I respected the content and findings almost 100% (with the exception of the OT report, because, admittedly, I don't understand what OTs do exactly. I've had it explained to me several times, "dumbed down" several times, explained again several times, and "dumbed down" even further, and I still don't really get it. But, that's not important to this story... only to my future development)

There was a great deal of improvement... across the board. There were things to work on, of course, but it was really nice to see, in black and white, the areas that were working. It was nice to see that the paths and "best courses of action" we had chosen were showing as bountiful. For a few minutes, I silently said "see, I told you so" to all those that wanted to choose a different path ( I say silently, because Julie and I have never received any major opposition to Jack's path. The one time we both completely disagreed with a service provider was a social skills group that clearly wasn't the right fit or philosophy for our boy. Julie saw this way before I did, and urged me to pull him from this camp, but I let them have a chance for a few extra weeks before we unceremoniously pulled him. So... Baby Love, here it is in writing, you were right).

***

What was missing from the report, however, were any compliments. I spent a Friday afternoon reading a 27 page clinical report on my son, that did not contain one compliment. Maybe that's not the place of these assessments. Maybe the reports are "meta-complimentary" meaning I was required to fill in the blanks... that the improvement is the compliment.

But I selfishly really wanted to read "Jack works really hard" or "Jack has a wonderful sense of humor" or "Jack's exuberance gives him unlimited confidence" or even "Jack has pretty eyes".

And that made me sad.

***

So, I want to take a second and put those "meta-compliments" in a more readable form.

Jack, you work harder than anyone I know.
Jack, you continuously climb obstacles that most of your peers would run and hide from.
Jack, you have a passion and zeal for life that I am jealous of.
Jack, I have never met a person that could command a room the way you do.
Jack, you are very endearing.
Jack, you never give up.
Jack, you were described as insular and lonely and frustrated at school, yet you still want to go EVERY morning.
Jack, the way you hug your mother has such an honesty and passion and meaning. It might very well be the manifestation of true love.
Jack, albeit colorful at times, you are very verbal.

Jack, you have taught me... Taught me patience, compassion, love, pride, serenity, sacrifice, and a whole bunch of shit about Star Wars.

Jack, you have beautiful eyes.

***

When Jack was days old, he had to be put on home phototherapy for a case of Jaundice. Julie and I wrapped our three day old son in lights and blankets and spent the next two days taking turns just watching him. My father came to visit and he took a shift or two.

We were scared.

I remember Julie asking my dad "How do you do it? How do you stop worrying? How do you parent?"

And my father said "You do everything you can to provide the very best opportunities and resources for your child. You have to believe in those choices. You have to be resigned that you have done the very best you can. And the rest is up to them."

Jack was three days old.

My father had no idea how true those words were.

Monday, May 5, 2014

The Princess Who Saved Herself


Jack started his Karate lessons this weekend. This is something he is doing with Julie. It's their time, and I won't intrude. But it went very well for the first lesson. They are both excited to return.

While Jack was with his mom, I stayed home with Jade (4). That means I played a lot of My Little Pony and Princess crap.

When Jack was younger and being assessed, the phrase "self-directed" was thrown around a lot. It was used as a euphemism for "poor listener" or "non-functional". On Saturday, however, I got a good look at what self-directed really means. When I am asked or tasked to play with dolls by Jade I, admittedly, don't really know how. I can do funny voices, I can make them dance or sing or bathe or picnic, but I really don't know what to do with them. Jack was never good at pretend play, if engaged at all. Jade, however, loves it. Alone or in a group. All of the ponies and princesses have their own stories. Their own struggles. Their own beings.

Luckily, Jade tells me how to play with the ponies and princesses. Quite sternly, might I add. "You're not doing it right" "She can't fly" "She doesn't live in the Crystal Empire" and the such.

So, this Saturday, it was the princesses.

Jade accidentally (perhaps purposefully) bit Rapunzell's hand, leaving it a little deformed with a bite mark embedded in the plastic. Jade desperately asked my to fix it. I tried, but the plastic was too molded and too hard to fix.



"Fix it Daddy, Fix it"
"I can't"
"No! Now she is ugly. The other princesses will laugh at her"
"No they won't. She is different and they'll like her for it"
"No! (Sob) Throw her away. Nobody will like her anymore"

And I instantly went to a place of advocacy. I disregarded that this was a TOY and saw a teachable moment.

"Jade, we don't throw away people because they are different. We celebrate them."
"No!"
"All of your movies are about somebody being different and fitting in. So, Rapunzell's hand is what will make her special.

Jade took a moment.

"Can we put a band-aid on it?"
"Yes. Then she can show it to the other princesses."
"Okay"

And we went to the bathroom to find a band-aid.

And I thought I should try to make the point again.

"Just because people are different, doesn't mean they are ugly. It doesn't mean we should throw them away. Like your Uncle. His legs don't work like yours, but we still love him (Uncle is in a wheelchair). It doesn't make him any less."

I had no idea if she cared about any of this. I fumbled for a band-aid. Dora was chosen over Mickey Mouse.

And Jade finally said:

"Like Jack?"

***

Emotions flooded me. How is it possible that my four year-old sees difference? How is it possible that my 4 year-old sees inclusion and disability that my peers can't often see? Oh, wait, Jack scratched his hand the other day, maybe she's talking about  his hand. That must be it.

***

The band-aid was adhered and Rapunzell was returned to Belle, Barbie, and Samantha (Hey, I'm guessing on the last one, the blue princess). And Rapunzell told her tale of heroism about the band-aid to a fascinated audience. I think there was a dragon involved. She was quickly accepted back into the fold and they left to go play in the castle in the kitchen.


***

I watched my 4 year-old spirit the dolls away.

How is it possible? How can a 4 year-old just have their shit together like that? When do we lose that innocence? When do we start to judge? When does that childlike exuberance that gives us unlimited confidence fade?

Not today.

"Yes, Baby. Like Jack" I said silently to myself.


Saturday, April 26, 2014

Home Sweet Home


My family and I went to the Walk for Autism Speaks 2014 event this morning at the historic Rose Bowl in Pasadena, California. We've gone the last 4 years. We've never had a team, but show our support for our community. I've even had the pleasure of meeting some of you there in years past.

This year was a little different. We brought Jack's in-home ABA therapist for his last session. We will miss her (as well as his other therapists... which I wrote about here). It was nice. We took advantage of the resource fair, said hello to some old friends, said good-bye to our therapist, and ate some crappy food from the vendors.


(Jack says good-bye to his last therapist)

***

For a few minutes, Jade and I split away from Jack, Julie, and Jennifer. I took her to the bounce house before it was too crowded.

Nearby, trying to stay out of the spotlight, was a woman with two boys. They were in a double stroller and were too large to still be in a stroller. I assume they were twins and were 8 or 9. They were both melting down. One crying and one thrashing.

Mom was obviously crying behind her over-sized sunglasses.

***

I spend so much time writing about our children fitting in and belonging among their peers. The resource fair at an Autism Speaks walk is a great place for our children to be who they are. Nobody looks twice at the child wearing nothing but a swimsuit, or the child talking to himself, or the eight children tracing the parking lot fence with their fingers.

It's home. It's safe. It's them.

For us, too.

***

I stand in-line for the bounce house and watch a grown woman cry. I take my sunglasses from my hat and put them on, because I don't want her to see me tearing up for her. Her boys are nowhere near the only children here having a "tough time". I feel empty and helpless for her. And I turn my head to not stare.

One by one, women walked by... other mothers, therapists, young girls perhaps on the spectrum themselves... None of them stop and stare.

The first, a woman in her 50s, places a soft hand on her shoulder and moves on. A young therapist gives the mom a hug. A child exchanges a smile with her.

Finally a man around my age walks by her. He places a hand on her shoulder and leans in close and says something to her. She gives a half-hearted smile and wipes a tear from behind those sunglasses. He touches her shoulder once again and walks away.

My mind races with all the things he could have said. He could have said something like "You're among friends", or "You're safe", or "We've all been there". And I smiled.

Jade finally got in to the bounce house. And the Mom calmed her boys enough to move on. As I watched her walk away I thought about my community. I thought about my peers, not my son's. I thought about how nice it was that so many people touched this Mom... with respect, not condescension. I was proud. I was proud of my community and my family. I thought of how often I read blogs about a kind word that was said, or a mean word that was said, or a dismissive glance given, or a disdainful scowl, or an empathetic smile.

And I realized the man that spoke to her was only a few feet away from me. He was watching his son in another bounce house.

"Excuse me. What did you say to that Mom?"
A wry smile emerged from his rugged face.
"You belong"

Fuck yeah you do.

Home Sweet Home.

Wednesday, April 23, 2014

Thank You



This morning I find myself overcome with a feeling of sadness, positivity, and nostalgia... all at once. 

Jack was diagnosed in November of 2009. In October of 2010, we started in home ABA behavior therapy. On Saturday, 3 1/2 years later, that therapy will end.

I want to write about two things in this blog today. First, what was the benefit of behavior therapy, and why we agree that it is time to move on to the next stage. Second, I want to thank the therapists that have been in our home, and part of our family, through the years.

My wife (Julie) has written before about how she felt we were "destined" to have Jack. You can read her words here. To paraphrase what she wrote so eloquently, there were lots of things in our lives that set us up to raise Jack. My father is a pediatric physiatrist. My sister is an OT, and her college room mate was an ABA therapist... So we were well prepped on what to expect from ABA therapy. I don't want to go into what ABA therapy entails here... it's a lot.

But I do want to tell all of you what we got out of it, and more importantly, why we are willing to let it go. Put simply (VERY simply) ABA therapy is directing instead of following. Stay in front of your kid, so you don't get behind him. "We're walking close to the grocery cart" rather than "Don't touch the peanut butter". To do it correctly takes a lot of time, a lot of patience, a lot of heartache, and a lot of "training"... TO THE PARENT/CAREGIVER.

Jack is by no means "cured" of his autism, or maladaptive behaviors, but Julie and I are as educated and trained as we can be to guide him through them. To understand them. To truly empathize with him. And, quite possibly, "correct" them.

Autism Spectrum Therapies gave us those tools. They aren't paying me to say that. I want to endorse this company (which is nationwide, btw). Their mission statement is clear. Their therapists are educated and fantastic. Their supervisors are glowing.

So thank you to AST for servicing us. It is because of your company that Julie and I truly feel we have the tools to move forward on our own.

Thank you.

***

One of the most wonderful (and humbling) things about raising a child with special needs is the people that will come in to your lives (and homes) for your children. It is amazing that there is someone out there that loves your child so much to make a difference.

I want to thank three. Actually, I want to thank four, but our current therapist is really Julie's (as they do sessions on the weekends now) and I'll leave that to her.

(ed. note - I am not using their real names, but the pseudonyms are loosely disguised as I want these ladies to read this)

Terry  - Terry came into our home as our first "full-time" therapist. You have to remember that I (the father) was home for most of the sessions. The father is the primary caregiver for ABA sessions around 8% of the time, so we were already a little unique. Terry taught me and Jack the ABCs of ABA. She was bright, had a wonderful disposition, encouraging, corrective when necessary, and thorough. Most importantly, she truly loved Jack. So many sessions were spent with Jack on her lap, showing her how "Handy Manny" wanted to set up his town (pretend play). Terry was soft and loving... which is exactly what we all needed at that point of therapy. We will never forget you. I remember there was a brief phase where Jack's reward was making "sound bites" on an application on the iPhone. He would record burps and farts and buzzer sounds. And one day he recorded this:

Terry: Jack.
Jack: What.
Terry: I love you.
Jack: I know.

And on the hardest days... I still play that sound bite today.

Thank you for loving my boy so much.

Karlie - Karlie came after Terry. She was brilliant, young, and enthusiastic. She found Jack fascinating and funny. She loved him. She came at a time where we were encouraged to "go out" in the community, and we did. We went to the grocery store and Target and the park. Karlie was the most interested in what made Jack "tick" of anyone. She was equally fascinated with him as he was with her. And she got promoted to supervisor deservedly because of this thirst for knowledge. Karlie also handled me well. When we had a break she would talk to me about the Dodgers. She was curious about Julie's job. She was just "going places".

Karlie, thank you for loving my boy so much.

Stacia - Stacia is the therapist we had for the longest period of time. She was the toughest and strictest. She had absolutely no problem telling ME I was wrong. She definitely taught ME the most of anyone. She was the best therapist I've ever met. We fought to get her. We fought to keep her. She was brilliant and never afraid to try new things.

Stacia was also with us at the toughest time. Stacia had to endure the "aggressive" year. Stacia got punched, kicked and bit right alongside me. Stacia stayed late to finish the "90 minute / 104 acts of aggression" meltdown with Julie... because she cared. We had her in some capacity for about 2 years. And despite her tough/rigid exterior, every once in a while, I would catch her saying simply "Jack, can I give you a hug?" because she was overwhelmed by Jack's charm.

What Stacia probably doesn't know (or at least adequately) is that she saved my life.

There were some tough times in that year. Stacia is the only therapist that has seen me cry. Stacia is the only therapist that has seen me throw my hands up in the air and say "fuck this"!

And she NEVER gave up on the boy.

And she NEVER gave up on me.

And I will NEVER forget that.

Stacia, thank you for loving my boy so much... But thank you for believing in him... and me... even more.

***

If you're new to this journey we call autism, I want you to take away from this article that you are going to meet some amazing people in your life. People that you would have never met had you not had a child with special needs.

People that will champion your children forever.

Let them.

Thank them.

Thank you, ladies. Julie, Jack and I love you.


Wednesday, April 9, 2014

We Belong






We took Jack to get a haircut last week. The haircut went well. Maturity/Age have made them not only bearable, but I dare say pleasant. In the prepping for the haircut, Jack opened his world to me. He let me see what he sees. He let me know what it was like to be him... and it was heartbreaking.

"Jack, we're getting your haircut today"
"I want you to shave my head, like Billy (a classmate)"
"Well, Jack, you're Irish. We don't do well with shaved heads. We get pretty bad sunburns."
"But Billy shaved his head"
"He's Hispanic. He can pull it off. You're not shaving your head, Jack"
"But Billy shaved his head"
"So what?"

"If I shave my head like Billy, maybe some of the other kids might think I am Billy... and they might accidentally sit with me at lunch."

***

When I was in high school, there was a kid named Matt in my class. He was the class president, prom king, and all that jazz. He was the nicest human being I had ever met. Humble. Kind. Handsome.

I went to his house one afternoon to attend a bible study... because I wanted to be him so badly.

***

Jack opened the door for a teachable moment. I was so proud of him using third person perspective that I almost blew it. I almost missed it.

I've assumed this entire year that Jack has an inability to take another's perspective. He doesn't "get" when he is being made fun of. He doesn't "play" social games, or participate in student hierarchies. He doesn't mind if another child excludes him for being poor, white, fat, short, dumb, nerdy,  or whatever. I've always placed the power of inclusion on him. Jack will find kids interested in what he is interested in... because he's so "self-directed"... he's so "autistic".

***

When I was 11 or 12, my parents bought me a bike for Christmas. It was a giant, yellow, beach cruiser. I cried because it was so "uncool".

As an adult I talked to my parents about "the worst Christmas gift ever". They said they purposefully chose that bike because I was such an independent soul. I was so different... and reveled in that independence... reveled in that artistry... reveled in that self-confidence.

And I told them how hard I had tried to simply fit in.

It wasn't until college that I found self-confidence in my independent spirit.

I just wanted to fit in... I just wanted to belong.

***

So, Jack, here I am publicly apologizing for selling you short.

Here is your new lesson.
Here is your teachable moment.

You are growing, my boy. You are maturing. I take responsibility for tackling what is going to be a very "complex" or "adult" issue.

Jack, everyone feels alienated. I bet Billy and Matt even felt it.

It won't be until later in life that you accept your uniqueness. That comes with experience and maturity. Unfortunately, that road also comes with a lot of solitude and longing.

Changing your haircut, or getting a new bike, will not help you "fit in". It will not change who you are.

I had plenty of friends that accepted me for who I was.

And so do you. I see you talk to them. I see them listen to you. I see them have lightsaber battles and play minecraft with you. I see them include you.

So, Jack you may never "fit in"... But, know this, you will always belong.

Always.


Jack and his "friends" at the La Brea Tar Pits - February, 2014