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.


  1. great post and really hits home for me. i have a 4 1/2 yr. old son diagnosed with autism just before he was three years old. i think no matter what the outcome was for many of us, PDD-NOS, Aspergers, Autism-this is the place in time that we are all connected. i think in so many ways, we as parents experience some of the same emotions- it hits so hard, and is such a painful time just trying to exist & be strong for our kids. thank you for your FB page and blog, so nice to know we are all a community and not alone.

  2. Great post, Jordan. Your mom is my champion, too. I share your experience, as well, as a parent and remember my 'first time' with Holly.

  3. James was diagnosed on 12/20/2006, just after his 3rd birthday. The first person we told was our daughter. That one was hard but the rest were even harder. It has gotten easier now that James is 9 and doing so well. At three there were too many unknowns. Now there are tons of possibilities!! PEACE

  4. On quiet nights I still cry for my boys.