Wednesday, March 27, 2013

Feels Like the First Time

I get asked a lot about Jack's diagnosis and when it first "hit me". I've never written about it. So, I think I will. I have to start with the early years. Jack was a fantastic baby. Slept through the night from the day we brought him home. Ate like a champ. Was rarely fussy. Put simply... a delight.

It was everything we could have hoped for. Around two years old he started to "disconnect", more appropriately, he started to disengage. He had little language. He played with toys non-functionally. Lined things up. Had no concept of object permanence or joint attention. He made little to no eye-contact. Looking back, all the classic signs. It was just before he was turning three we had this conversation with his daycare provider. She knew we were going to his 3 year old check-up soon and had a list (actually a written list) of concerns we should talk to the doctor about.

I won't list those details here, or how that doctor appointment went (that's for another blog and, frankly makes me too angry to re-live right now), but basically, against the pediatricians advice, we called our local regional center for an assessment.

The diagnosis was given by the end of the week. There it was.


Not PDD-NOS, not Aspergers, not even High Functioning Autism.


My wife wrote a guest blog about her experience on that day which is worth reading if you haven't yet. Here is her article. I went to Las Vegas to celebrate somebody's birthday the next weekend and a bunch of my family were there. I was doing fine with it. I already knew who Jack was and what he was like. I was already doing the best I could to take care of him.

I was in the hallway of the Las Vegas Harrahs meeting my mom to head down to dinner when I told someone for the first time.

Mom: "So, how's my Jack Attack doing?"
Me: "He's fine, I guess"

A long silence

Me: The regional center told us he's autistic.

And my mom stopped. She started to tear up and placed a hand on my shoulder.

Mom: I'm sorry.
Me: You don't need to be sorry. Jack's going to be fine.

And then my mother said the wisest words ever.

Mom: I'm not sorry for your child. I'm sorry for mine.

She knew how hard it would be on me. I didn't, but she did. And she didn't want to see her baby go through it. It wasn't until months later that I truly accepted how wise her words were.

Since Jack was already three, he was eligible for services through the school district. I asked the regional center how I get those started and they informed me that my district offices had an office of special education services on the second floor of their administration building. I just needed to go in and request an assessment.

It was a Tuesday morning, early December in 2009. I found my parking space and walked into the Glendale Unified School District administration building. I asked someone at the help desk how to get to the department of special education services and she told me. It was on the second floor and the elevator was right behind me. I stepped out of the elevator and saw it. A conveniently placed placard reading "department of special education". I was at the right place.

And I fell apart. My face fell in to my hands and I bawled my eyes out. I had to duck into an empty alcove to collect myself. I just remember thinking to myself how I never expected to be there. I have a master's degree, my wife has a JD, my son needs special education services. What had we done?

What had I done?

What had I done?

The assessment went well. They got him in very quickly and he started a blended pre-school weeks later (right after Xmas break).

There have been many more trying times since that day. There have been many good cries about my son. But that was the first.

Today I think to "why then"? Special Education services have been fantastic to both Jack and us.

I think that was the moment my mom was right about. I cried for the loss of innocence. Not for Jack, but for myself.

Friday, March 22, 2013

Baby, Please Don't Go

Whenever something "goes wrong" in the raising of our children, we're very quick to wonder what variable set it off. Change in routine? Change in meds? maturity? A traumatic event? Financial change? Something else?

We are not as quick to ask those same questions when something "goes right".

This week was Spring Break from Jack's school. Jack does not take medication on non-school days. Jack had oral surgery (teeth) on Tuesday in which he underwent general anesthesia. We loaded up on the Behavior Therapy hours this week since we were out of school. Julie was unable to take the week off work to take a vacation somewhere different. Our usual out of town vacation spots (family homes) were unavailable for quick getaways. We had a psych appointment on Wednesday. And daddy had the kid all day... One week of planning every minute. Just the two of us. I would love to tell you how much I was looking forward to that time. How much closer Jack and I would be at the end of the week. How much fun we would have. But my selfish ass was thinking more along the lines of what a long effin' week, what the heck am I going to schedule for fun, and how the Hell am I going to get to watch March Madness?

I'm embarrassed to type those things about myself and my attitude, but I needed to prepare myself for what I feared would be the hardest week of my life. I just listed several potential disasters for the week. We're all about staying one step ahead of the game, right? At least trying to be?

And we had the best week ever. Julie was able to be home for his surgery on Tuesday and come home at a reasonable hour for dinner every night. His interactions and compliance have been truly remarkable (and we have the ABA statistics to prove it!). He had a friend over twice and had APPROPRIATE conversations with her. I have never been more engaged with my child than I am this week. Never.

There are 5 or 6 reasons, or changes, that might contribute to this "step in the right direction". I can analyze the hell out of them and try my hardest to determine the independent variable that is causing this recent success. I may even find it.

But, that would take time.

And I'm too busy, for the first time in a long time, enjoying him.

We've had a fantastic Spring Break: Jack, myself, Julie (mom) and Jade (baby sister). My friends will ask me and Jack what we did over spring break on Monday.

I will smile and say "absolutely nothing".

And it was the best fucking week of our life.

Tuesday, March 19, 2013


Growing up, my mom always used to talk about destiny.  My mom is a spiritual person and believes that everyone is put on this earth to learn and to contribute in some way.  Like the average selfish child and teenager, I generally ignored my mom when she talked about destiny. 

My son was diagnosed with autism at approximately 5:00 p.m. on Friday, November 20, 2009.  I was standing in the reference book aisle of the Barnes & Noble on Hollywood Boulevard, seven months pregnant with my daughter, when my son’s psychologist called to tell me that, after observing him at preschool, she could now confirm that, in her opinion, Jack had autism. 

I would like to say that I was strong, that I immediately accepted the diagnosis and launched into an action plan.  But I didn’t.  I was in shock.  It was not until I was about five miles from home that it hit me.  Jack had autism.  Jack had autism.  I was so overcome with grief that I pulled over on the side of the freeway and sobbed until I got sick.  As the weeks and months passed, I didn’t handle it any better.  I continued to cry - often.  I withdrew from my friends and family.  I was mean to those closest to me.  And I was angry.  I was so unbelievably angry.  And I was jealous.  I was jealous and angry when I talked to friends and family with typically functioning children. 

I’m not sure when it first happened but, little by little, I started to realize that EVERYTHING in my life seemed to support Jack and his diagnosis.  Despite my best efforts to move back to my hometown of Sacramento, I had ended up in Los Angeles, a hotbed for behavior therapy and occupational therapy research for individuals with autism.  I was an attorney – a profession I never envisioned myself pursuing but which provided me with the skills and connections to advocate for Jack’s services and education.  My sister-in-law was an occupational therapist for children with autism.  My college roommate, with whom I had shared a room for six years, studied behavior therapy at the Lovaas Institute and was a behavior therapist (and spent hours telling Jordan and I what to do before we officially started ABA behavior therapy at home).   I was married to someone that, without any hesitation, quit his job to stay home with Jack.  And I was surrounded with friends and family, many who also had children with special needs, who provided support and empathy.

Jack is my destiny.  It is my destiny to be his mother.  I know that he is going to surpass Jordan and me in life and that he is going to make a profound impact in this world.  It is my destiny to help him get there.

It is also my destiny to learn from Jack.  To learn that life does not always go according to plan.  It is okay to let go of control.  It is okay to disagree with professionals.  It is okay for people not to like you.  It is okay to make a scene in a grocery store.  It is okay to be sad, to be angry, and even to be jealous.

Now, when I hear that Jack had a difficult day at school, that he will likely need to repeat first grade, that he is not reading at the level he should, that he needs to add social skills therapy, I just smile because I know that he and I are in this together.  That this is just our destiny and I can’t wait to find out where we head next.  Namaste, Jack Capell.  Namaste.

Tuesday, March 12, 2013

All the Small Things

For those of you that do not follow the "Find My Eyes" Facebook page, I recently posted a picture of Jack.

On Sunday morning Jack announced that he was going to get to level 100 on Gauntlet 2. I told him to knock himself out thinking he would give up around level 8. Sometime around 3 o'clock, we took this picture and put it on the Facebook page.

Consequently, I watched as the number of fans of my page went down and down (about 15 total). One of my former "fans" was kind enough to send me a message as she walked out the door. "You shouldn't let your kids play video games all day... No wonder he has ADHD". My initial response was one of defensiveness. How dare she, that's not what ADHD is, don't tell me how to raise my kid, etc. But I simply responded with this "Thank you for telling me why you are leaving my site. If you are a parent on a similar journey, I wish you the best of luck and prosperity".

I am not angry with her. She chose a private forum to inform me of her feelings. The others that left simply "unliked" the page, a quiet and respectful way to bow out.

It seems as parents, we are constantly in competition with each other. How often do people check in with their kids at "The Natural History Museum" vs. "McDonalds"? We want other parents to know that we are doing things that are educational, or exemplary, or even right. We want our peers to think/know that we are doing the best things possible in raising our children. We want to brag about them. We want others to know that we, as parents, are parenting "correctly". We want our friends to know that our children "love organic broccoli" and "sushi" and have no interest in "chicken nuggets" or "that television thing".

I am about to do the same thing.

Jack really struggles with personal responsibility. Whenever he has a meltdown, or is simply oppositional, it's always somebody's fault (usually me). It's something we work on daily through behavior therapy, school, and OT. Jack has autism. Autism means "selfness", the inability (or disability) to see beyond your own world. The inability to know that others simply don't direct you, but want you to succeed, want you to be loved, want to share you.

On Sunday, I got to teach Jack a valuable lesson. A lesson, I hope, we all want to teach our children. If you set your mind to something, you can do it. Jack became very frustrated with his game, but he did things like ask for help, or take a break, try a different exit in the game instead of throwing the iPad, crying, or blaming me in frustration.

The reason I defend allowing my son to play a video game most of the day is simple. There are lots of pictures of Jack on the Find My Eyes facebook page. There is one thing in this picture that is different from all of them...


It's written in his face. This is the most engaged picture I have of my son.

Jack, despite what anyone says, you can accomplish anything. I admire your dedication. I empathize with your struggle. I champion your success.

I will continue to share your success with you and my friends and family and our blog, despite the silent judgement placed on me.

Thank you to Midway Arcade (the makers of Gauntlet 2) for a vehicle to teach my son one of the virtues.

Thank you, my son, for teaching me two more... Patience and Serenity.

Because everything here is Holy. Everything. Even you.

Wednesday, March 6, 2013

Let's Get Retarded

Today is the "spread the word to end the word" day. An underground national campaign to end the use of the word retarded. I wasn't going to write anything about this. I wasn't even planning on sharing a link or two on the "Find My Eyes" Facebook page. But here I am, finding myself helpless to ignore it.

The word mentally retarded was originally introduced as a euphemism to describe an individual with an IQ below 70. It replaced clinical diagnoses like idiot and imbecile and moron. It was a great leap forward in a campaign to end those hateful words appearing on a clinicians report.

It seems that the time has come to replace it again. We're seeing more and more diagnoses of "cognitive delay" or "intellectual disability". It is because the word retarded has become so commonplace in our lexicon, that the colloquial use has become the proper use. "The button on my shirt broke... retarded shirt!"

I am embarrassed to admit that I have used the word retarded to describe an object or a situation in my life. I am proud to admit that I no longer do. It didn't take having a "special needs" child to get me there, either. There is such hatred and hurt behind the word. It's simply wrong. I imagine if you're taking the time to read this blog, you are intelligent enough to know that already.

Here is who I want to address... the people that defend the use of the word (Anne Coulter). You are smart enough to know that you are using a word that has a history of hatred behind it. You are smart enough to know that you are using a word that has a history of hurt behind it, yet you defend your use with phrases like "I didn't mean your son" or "I'm not talking about a person" or "It's too good a phrase, I'm not letting it go" or "Stop being so sensitive. The world doesn't revolve around you".

The word hurts.

It hurts millions of Americans (children and adults) and their families and their friends. It hurts my son. It hurts me.

I am not actually advocating the end of the use of the word, "retarded". I just want English speakers to know that they are choosing to alienate, stigmatize, and harm others when they choose to use it, and that's on them.

There is a terrible racist and hate-filled history behind the term Mongoloid to describe children with Down's Syndrome, but most of us have never heard that term because in the 1960s the World Health Organization deemed it inappropriate in clinical or diagnostic use.

See? We can change.

Even The Black-Eyed Peas had the good sense to change the name of this blog title's song to "Let's Get it Started" for radio release.

If Fergie can do it, so can you.