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

Thursday, March 27, 2014

1 in 68! Careful, America, it's coming for you!

1 in 68... a 30% increase! Careful, America, it's coming for you!


These are the cries of the new Center for Disease Control report on "Autism Prevalence" in America.

Initially, I simply chuckled at this number as scare-tactic propaganda. I mean, the CDC needs money, autism research/treatment needs money, our kids need money. I get it. If that ratio had gone down to 1 in, let's say, 100, the pitches for funding would have a tougher sell. I could already see Joe Congressman's response "but wait, the number is going down, so we don't need more money".

There was a pretty famous letter/speech written by Suzanne Wright (Co-founder of Autism Speaks) that was a "call to action" for funding Autism awareness, treatment, research, etc.(Here) that the blogosphere DESTROYED because it painted autistic children as helpless, or violent, or extremely disabled, or simply broken. "That's not my autism", "how dare she", and "Autism Speaks is a joke" was heard shouted from the rooftops.

"How can the head of the largest (by far) charity/organization be so insensitive and flat-out wrong"?

Because she wrote that letter/article to present to Congress for funding! She HAS to be an alarmist. She has to employ writing/speaking techniques and tools like... guilt, hyperbole, and fear.

Can you imagine if she had presented a speech/article for FUNDING that started like this: "Lack of autism funding is a major problem in America, but my daughter is doing great and is perfect the way she is"

Which may very well be true, but ain't gonna' sound many alarms as an issue that needs funding now.

Her now infamous letter was not written about my son, it wasn't written to me, and it wasn't written FOR me. It was written for funding... and I, believe it or not, appreciate that.

So, here we are today, with the CDC releasing a new, more alarming, approaching epidemic for Autism rates in the US. I do want to say that I believe these numbers are accurate, truthful, and even alarming. They deserve attention. They deserve awareness. They deserve funding.

They do not, however, deserve epidemic outbreak status. And, those of us that already live the life, do not deserve the propaganda.

***

When Asperger Syndrome was removed from the most recent DSM, we expected a HUGE increase in Autism prevalence... we just got a whole bunch of new "patients".

Even today, there are NO genetic markers for autism. Autism is a "collection of presentations of developmental disabilities/delays coupled with poor social skills". That's it.

It is diagnosed (varies State to State) by Physicians, Psychologists, School administrators, or State Social Workers (rarely by all four).

The presentation (or spectrum) is vast and amazingly subjective for the affected individual.

Yet we, the blogosphere, continually discredit all potential causes with "not my son" or "I never did that when I was pregnant" or "My other children are fine". We stick to our causes (whatever they may be) as the only possible cause for a spectrum of the affected. We look for people to blame, sue, or pay for it. We invite "science" in to the argument, only to discredit them when we don't like what we hear.

Perhaps we are looking at the wrong causes...

Perhaps it's time to invite "science" back in...

***

"A presentation of any developmental disabilities/delays coupled with poor social skills"

Maybe, just maybe, we should be looking at what causes those "developmental disabilities/delays"... because we often know.

Almost 50% of children with Down Syndrome have a co-diagnosis of autism.

45% of children with autism have seizures, or a seizure disorder (while the general population is around 5%)

Immune deficiencies (Jaundice for one) can cause "cause brain damage resulting in developmental disabilities/delays"

Fragile X syndrome (which is RARELY tested) can "cause moderate to severe developmental disabilities/delays"

Rett Syndrome can cause SEVERE developmental disabilities/delays.

Childhood Disintegration Disorder (or Heller Syndrome) causes SEVERE developmental disabilities/delays.

These are just a few of the genetic markers we can test for.

Is it possible that a child with severe ADHD might just develop poor social skills?
Is it possible that a child with severe SPD (sensory processing disorder) might just develop poor social skills?
Is it possible that a child with IBS might just develop poor social skills?

Of course it is...

***

We spend so much time looking for a cause for autism... Traffic, vaccines, absent mothers, food preservatives, cell phones, etc...

We KNOW the cause of several (if not most). But they aren't sexy. They are words like "Down Syndrome, Fragile X, Heller's, Jaundice, ADHD, Gastro-Intestinal issues, Rett's, or seizure disorders".

Autism in America has simply become an adjective, a replacement for "developmentally delayed". The affected are not afflicted with autism... they present as autism... and a presentation is not a diagnosis.

***

"So, Jaye, since you've got it all figured out, what are we supposed to do"?

The CDC number of 1 in 68 children are diagnosed with autism, should read 1 in 68 children present with autism.

The number is just as alarming. The number needs just as much increased funding.

EVERY child diagnosed in this country should see a Geneticist AND a Neurologist to rule out what are often treatable disorders.

The autism community needs to band together and fight for funding for research and awareness of ALL of these causes.

We are growing (obviously), and there is greater strength in greater numbers.

Far too often are children (including my own) being labeled "autistic" and we are contempt to raise them as such...

And we stop asking questions.

Never Stop asking questions.

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

You can't work backward in a logic chain.






Monday, March 3, 2014

Malibu





To be honest, I didn't want to go. We had just finished two straight days of rain and this was supposed to be a beach party? On the first day of March? I didn't want to drive for an hour just to follow the boy around making sure he didn't drown or break something. I thought I just didn't have it in me.

But the boy (and baby girl) wanted to go. We complain all the time about how we are never invited to birthday parties and outings and playdates, and here is a family reaching out to us. A little girl who (continually) reaches out to Jack and, truly, loves him. I would be the biggest hypocrite in the world if I cancelled.

So we dressed (it was a 50s theme beach party), loaded up the car and headed to Malibu.

The party started nicely. We had some food. We had some drinks. Jack interacted with his peers. He even took (and enjoyed) the Hula lesson. And he asked me over and over again if he could go down to the beach. And it was finally time.

Now, for those of you not familiar with Southern California beaches, Malibu is a bit different. It's not a huge expanse of sand and sunbathers. There is a little bit of sand, and lots of rocks. Lots of tidepools. Usually overcast. And tons of surfers.

So we made a break for the small stretch of private beach owned by the family that owned this particular house. At first, Jack was a little obsessive helping some other (older) boys clear the seaweed from a path that led to the water. They gave him a shovel... enough said.

Then Jack (and his mom) went to the shoreline... leaving the din of the party behind.

Perhaps leaving the din of life behind as well.

And Jack did what so many seeking solace have done before. He stared at the sea.


Mom and I took turns showing Jade things in the tidepools and playing in the sand. The other was able to socialize with the other adults and kids at the party.

The whole time Jack stood motionless... hypnotized by the motion of the sea.


A lone surfer tried again and again to find his perfect wave.

And Jack watched. I tried a few times to engage him. I asked him if he wanted to see the starfish or crabs that littered the rocks. He politely declined. He told me he wanted to be alone.

And I obliged.

And he stared for around 45 minutes... a lifetime for an ADHD child.

And he stared and thought and thought and stared.


Jack loves the water, from the ocean to the bathtub. From the rain to a waterfall. He loves the simplicity. He loves the repetition. He loves the expanse. He loves the embrace.

I imagine he stared off thinking of faraway lands and adventures. I imagine he thought of all the animals that live in the sea and their stories. I imagine he thought of all the men that had stood in that very same spot over thousands of years staring at that very same sea. I imagine he thought of the women pacing the beach waiting for their husbands to return.

And, for some strange reason, I imagine he thought of home.

45 minutes is a long time to be silent and stare at the sea... it's even longer to be silent and stare at someone staring at the sea.

***

Jack finally broke his silence and informed he wanted to learn to surf. I told him we could look into it. There was an impending silly string fight that was being prepped.

He participated, engaged, interacted, and thrived. He went upstairs to sing happy birthday, eat cake, open presents and play minecraft with another boy. And he was great. And he had fun. And he belonged.

***

While the silly string fight ensued, I stole a moment to myself and tried it.

I stared at the sea. I thought of all the chaos and energy of life. All the activity of the world behind me.

And I did what so many before me had done. I stared at the sea...

And in that brief moment, just once, just for a second, it all went away.

It was immaculate. It was celestial. It was providence.



And for the first time in what seems like years...

I got it.


Monday, February 24, 2014

Hands





What's in a meme?



There is so much talk about Autism as an "invisible disability"


You cannot diagnose autism from a picture or photograph.

However... Something I've noticed over and over again about taking pictures of my son is the things you can see.

The first picture is fairly recent. It was taken at the California Science Center in Los Angeles about three months ago. It wasn't staged or posed and I didn't realize how great a picture (or how much it says) it was until I was downloading it to the computer a few days later. I love the way he is standing away from the crowd and the light is shining on him... a spotlight, or angelic aura, emphasizing his hair color.

The second was taken by a friend at a birthday party when Jack was 3. He was still in the process of being diagnosed (or at least we were still in the process). As a side note, this was the party that a complete stranger said to me "When I'm not drinking at my grandson's birthday party, I'm a psychologist. I just want you (Julie and I) to  know... You deserve to be here. He deserves to be here"

( I wrote about that initial encounter before, you can read it here)

I've never spoken to the man that said that to me since, but I remain close with his daughter and her husband. They are an incredible family.

And to "Rachel's" father... I am eternally grateful for the words I needed to hear. Grateful for the words I've stolen as my own whenever I meet a new autism family. Words I tell myself and my son when we're not doing so well at the restaurant, or in the classroom, or at OT...

Deserve.

***

I lost track of my post.

In taking hundreds of pictures of the boy, I've noticed a few similarities in his pictures.

Lack of Eye Contact

This is an easy one, almost cliche. It is always a challenge to get Jack to look at a camera. It's a challenge to get my 4 year-old to look at the camera too, but she eventually (even if reluctantly) always will. You just have to hope you're catching the right time with the boy.

Posture

Notice how straight his back is in both pictures. It's a very unnatural stance (especially for a child that is constantly moving). Pay attention to Jack's feet in the first one. He's standing on his heels. We talk about "tippy-toe" walking a lot with our kids... do you know why? Here's why. Many of our children have poor proprioceptive processing (a Sensory Processing Disorder). They have difficulty knowing where their body is in space. If I close my eyes, put my hand out, and wiggle my fingers, I still know where my hand is, what it is doing, and how to manipulate it (proprioception). When your body becomes "blurry" in space, you will counteract by placing the least amount of your body against the stimuli as possible... hence the "tippy-toe" walking... hence the "finger flicking"... hence the "walk-walking" with one finger... hence the fine motor tool aversion (a fork, or a pencil).

Hands

This is the dead giveaway. When I was younger, I did a lot of acting. One of the first things they teach you about being on stage is what to do with your hands. Take a look at the hands in both pictures. Constantly seeking reception or stimulation.

What I would like to point out, therapeutically, is how far he's come in 4 years. OTs work on this crazy little thing we call Proprioceptive Processing Disorder. They work to desensitize the "lost" sensation. They work to ground it. At 7, Jack holds his hands together to ground them. At 3... it was all flaps and flicks.

***

Pull up a few pictures of your kids... Do you see these things too? So, no, it's true that you cannot diagnose autism from a picture or photograph... but sometimes you can see it.

Wednesday, February 5, 2014

Everybody Hurts


A Tale of Two Victims

A Tale of Two Bullies

I went to an incredible public elementary school, a sub-standard public middle school, and a good public high school, an average public (State) university for undergrad, and an amazing public (State) university for grad school. I have no personal experience with "private schools"... at any level of education. I am proud to say that I am a product of California public education from 1979-1996. I never once felt that I was denied any opportunities to pursue any futures... heck, I was even encouraged once in awhile. But after 3rd grade, or so, it was what I put in to it that dictated what I took out of it. I guess my parents had a little something to do with it as well. Many teachers and professors were amazing and encouraged me to pursue things like the arts, and some weren't. But I learned quickly that I could just do what they asked or required and wouldn't have them again. "Bad" teachers didn't hate me (like my angst-ridden teenage mind was convinced), they simply didn't care about me... and I could get over that.

In High School, there were two students I want to talk about. One was a friend. One was not a friend. Both were special needs, either undiagnosed and lost in the system, or ahead of their time and fully included. "Billy" was in the band with me (hey, believe it or not, I haven't always been this cool). Billy was an odd-duck. Billy used to greet us every morning referencing how many days it would be to General MacArthur's birthday. Billy went on a band trip with us to Sacramento and somebody mistakenly admitted they didn't even know there was a Sacramento County, to which Billy listed all 58 California Counties. Billy was an average musician, a good student, a terrible athlete, a decent jokester, spoke with a sing-song voice, got lost/overwhelmed in a lot of social situations, struck out with the ladies, but was one of the gang. I never felt that Billy "had my back", or would "be the first to help me move a couch", but he was a friend.

He was one of the gang.

Today, some of my friends might say to me "Hey, Jaye, do you think Billy had Aspergers?"

But in 1992, we didn't know what that was.

Billy had an older sister that was in my class... and had been since 3rd grade. And I loved her and would have done anything for her. I remember that sometimes she and Billy would bicker in band. It wasn't really bickering, at least with any sort of back and forth. It was more of an exasperated "Billy, I don't care. Stop talking".

But she loved him, watched him, protected him.

And so did we.

***

"Sally" was not in any of my classes, but we had Physical Education and assemblies together. She was neither as bright nor as articulate as Billy. She was very physically intimidating for a girl. She was picked on, a lot, and as far as I knew, didn't have any friends. I can tell you honestly that there were three separate occasions where I decided I was going to be the one to get to know her. I decided I was going to be the better person, and put my own fragile social standing on the line to become her friend, or include her, or get to know her. The first time I spoke with her, there was a brand new band coming out of Seattle that we were all wild about called "Nirvana"... I asked Sally if she liked music... she told me to "go fuck myself". There were two further attempts to reach out, both were met with similar (albeit not so vulgar) responses.

Sally was mean. Sally liked to fight (or at least never back down from them).

Ironically, Sally had an older sister, too. She was in my class, but I didn't know her very well, and, to my knowledge, she never mentioned Sally.

One morning, before band practice, Billy came hustling around the corner, mumbling to himself.

"What's going on, Billy?"
"Did you know that today is 315 days and 85 years to MacArthur's birthday?"
"Yeah."

And Sally came around the corner.

"You're stupid and nobody likes you" She caught her breath, looked at me, then looked back at Billy, "You don't have any friends"

And Sally stormed away.

I turned to Billy and asked him if he was okay. He told me she yelled at him and chased him every now and then, but was fine.

I assured him he had friends.

***

I never saw Sally again. It was near the end of the school year and we didn't have PE at the same time anymore. I didn't see her at graduation and, sadly at the time, didn't care.

***

There must be some reason I told you these stories, right?

A few months ago, I got the alumni magazine from my Undergraduate University. There was a picture of the the community band on the front cover... and there was Billy. Smiling behind his trombone. Comforted in his sea of normalcy. Maybe he's an engineer now, maybe he's a professional musician, maybe he's an historian, maybe he still lives at home... But there he was. And it made me smile.

It made me think of Sally, so I googled her. I asked a friend or two that still live in town if they knew where she went. Nobody did.

I found her obituary. She passed away in 1999. There were no details. There was no epitaph. There were no news articles. Her obituary read the way I had known her... alone.

***

There isn't a day that goes by since my son was diagnosed that I don't think about Sally. I think about how sad she was. I think about how mean the world was to her. I think about how unfair life was to her. I think about how I could have done more to change that.

And then I think about how mean she was... to Billy.

To me.

***

Social status is so important to children. I think of  Sally. So picked on, so alone, so misunderstood, so abandoned in a world that had forgotten her, that she had no options but to lash out and pick on those she perceived as weaker.

And I watch my boy...

And I don't know how to tell him that his actions (although not intended) can be perceived as bullying. I don't know how to tell him that EVERYONE feels alone sometimes. I don't know how to tell him that EVERYONE hurts. I don't know how to tell him that EVERYONE has their own story, when he has so much trouble discerning perception in the first place.

Tell him he is "one of the gang".

I can only model...

Good Lord. Please.


We can only model.


Wednesday, January 15, 2014

Serve & Protect


About 2 1/2 years ago, in Fullerton, California, a known schizophrenic named Kelly Thomas was detained and beaten to death by Fullerton Police Department. It was big news (at least in Southern California) that resulted in in a murder trial for two of the officers. Very rare indeed, as cops are almost never charged with murder. A serious blow to the fragile system and thin blue line between those who are hired to "serve and protect" and those who are to be "served and protected".

On Monday, Jan 13th, 2014, Officers Ramos and Cicinelli were acquitted. The charges against the third officer were dropped.

***

I am not here to question the legal system. This is a heartbreaking situation that clearly was full of intent, malice, hatred, and ignorance. There is no doubt that these two officers killed a "homeless man" by beating him to death. There is also no doubt that they would ever be convicted... where on Earth are you going to find a jury of 12 people... that live in the community... that will have to see the police every day... that had no love or relationship with the victim... that pay the salaries of the accused... that need the accused to "serve and protect" them... to stand up and say "Fuck you". 12 innocent people, in a courtroom full of uniformed officers, to say quis custodiet ipso custodien (Who watches the watchmen?).

After all... if you stand out, the police may kill you.

***

I think of my son.

***

We spent many years (yes, years) in ABA therapy working on something in the business we call "two-step commands". Go to kitchen and put your plate in the sink (related), or go to the living room and jump up and down (unrelated).

***

Kelly Thomas was not autistic (to my knowledge), but he was schizophrenic, and homeless, and, to society, had very little value.

But, somewhere, he was a friend. Somewhere he was a mentor. And somewhere he was a son.

And he cried out "Daddy" 31 times in the 5:49 seconds that up to 8 police officers literally beat the living shit out of him.

He cried out "Please" 31 times in the 5:49 seconds that up to 8 police officers literally beat the living shit out of him.

He cried out "I'm sorry" 22 times in the 5:49 seconds that up to 8 police officers literally beat the living shit out of him.

Those do not sound like the cries of "resisting arrest" to me.

***

I think of my son.

***

We (the public) were lucky enough to have  full video and audio of the entire "arrest". That's how we hear Kelly cry out. That's how we hear Officer Ramos tell Kelly "these are the hands that are going to fuck you up". That's how we hear two officers joke about a misunderstanding about where the gurney is going. That's how we hear officers saying "he's on something" over and over again (toxicology reports proved he was not).

But that's how we don't hear a single officer, passerby, parent, or child say "Kelly, what's going on?"

***

It took us many months to master the "2 step command".

And "Lay on your stomach, and put your hands behind your back" at the same time were commands we never tried.

Neither were "serve and protect".

***


http://www.latimes.com/videogallery/69846618/News/Full-un-edited-video-presented-in-Kelly-Thomas-murder-trial

This is a link to the unedited ordeal. I only want you to watch it if, for some reason, you think I am lying or making this up. It is gruesome, angering, and heartbreakingly sad.

My heart goes out to Kelly Thomas' parents... who have been very vocal in this case against the police.

Especially as a father to a father... a father that your son cried out for 31 times in his final minutes.





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.