Thursday, December 12, 2013


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:


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...


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

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

"That's Pinkie Pie"


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

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

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

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

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

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

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

Respect, not condescension.

Tuesday, December 3, 2013

Mmm Mmm Mmm Mmm

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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


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

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

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

He said he would try.


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

"What's going on, Jack?"

"I just want to be alone"

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

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

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

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

"Mmm Mmm Mmm Mmm"


Jack, you could not make me more proud.