Wednesday, August 7, 2013

I Remember

This picture is from our most recent trip to Texas- These are the shoes he wore on the day he was diagnosed.
(I always get shoes a size too big so they fit for a long time.) This is me and James writing his name
in the sand. He knows how to read it and is almost there on spelling it.

I remember it was a Tuesday. One year ago on August 14, I got in my minivan with my mom, Chris, Lily, and James. My mom was driving and we first took Lily to a family friend's house for the day. I remember her pink and purple backpack, and the little treats and activities I had put in it. Then we drove to Texas Children's Hospital, to the Meyer Center.

This is him wearing the shirt
four months after his diagnosis
I remember that we parked in a corner of the parking garage, one car away from the wall. I remember the little backpack I had packed for James with some treats and his iPod, and that I had a tote bag packed with all of James' past assessments from doctors and our state's early intervention program. Along with some lists our family had made of things that Lily could do that James couldn't. And a list of odd things that James did but Lily didn't. I remember that feeling you get when you know you're late for something, when your chest is tight and you stop noticing the things around you because you're so set on where you're going- but we weren't late at all.

One of the things James did but Lily didn't:
Picking out the Crunch Berries and lining
them up in a row by color.
I remember what he was wearing: a blue, black, and white plaid shirt and jeans from Walmart, and some skater-looking blue, white, and black shoes. White ankle socks. I don't remember what I was wearing but I had on some black with pink DC shoes, Chris had black with green DC's.

I remember James crying when we carried him into the white room to get his height and weight. It was the first room on the left when they took you back. Us telling him that it will be super fast and it won't hurt, wishing he could understand. Hoping that somewhere inside he knew we wanted to help. Then they took us back to the room we would wait in. It was the last room on the left.

When you walked in, to the left was a desk with a computer. Straight ahead there were two chairs under a window. There wasn't really a view, just cement buildings that you knew were other buildings that belonged to the hospital. Off to the right was a short round table with two children's size chairs. And there was a big whiteboard on the wall above the table.

My mom and I sat in the chairs and Chris sat at the table with James in his lap. Chris was trying to entertain James with a toy I had brought so that we didn't have to resort to the iPod. We all knew that if we let James have the iPod we wouldn't get him back and the visit would be for naught because he would no longer respond to us or would go into hysterics if we took it away.

Three months before diagnosis at the luncheon for my brother's
wedding. Out comes the iPod because we needed to keep
James calm during the speeches.
When the doctor came in I was stunned because it was the head honcho of the Meyer Center. He didn't seem very tall, definitely not as tall as Chris. He seemed nice and that he knew a lot but not in a conceited way. I was impressed because when we started to talk I could tell he had actually read all those papers in the tote bag that I brought, which I had previously emailed to his assistant.

We sat and the doctor spoke with us for a long time. He asked me and Chris about our medical history from the time we were babies. He asked tons of details about my pregnancy. Asked about everything that had happened in James' life so far, a lot of things that I hadn't even thought to mention. And he asked us about autism-like symptoms in our families. Chris' younger brother, James' uncle, was diagnosed with autism when he was 23 months old. My grandfather, James' great-grandfather, had Asperger’s.  Before that moment I hadn't realized how much genetics played part when it comes to autism. I remember that he didn't make me feel stupid. And especially he didn't make me feel bad for all of the things that were different about James, that the way I was raising James was the reason he was so hard to take care of.

James and Lily on a website that teaches
kids letters and their sounds
Then the doctor started to "work" with James. I say it in quotes because when the doctor said his name James didn't even move. When he stood behind James and clapped his hands James didn't even flinch. James did interact somewhat, he did a three-piece shape puzzle that the doctor put in front of him. When the doctor wrote letters on the whiteboard James named them. The doctor put a piece of paper in front of James and when the doctor asked, James was able to draw a discernible circle. I remember when the doctor looked at James' circle and looked up at me and my mom saying that he was impressed.

My son trying to balance as he walks in the
sand in front of my mom's barn
Then we moved on to the physical stuff. The doctor asked us to walk down the hallway during which James insisted on holding both me and Chris' hands. I was on the right and Chris was on the left. I remember thinking that James' pants were almost too short and I would have to retire them soon. We came to an alcove that looked like a very elementary obstacle course. The first thing the doctor had James do was walk up a wide and shallow three-step staircase with a wall on one side but no rail on the other. James wouldn't unless Chris was next to him holding his hand. Then there were other activities that James ultimately didn't do or wouldn't do unless Chris was holding his hand. I remember walking back to the room thinking, "That wasn't very long. Is that how it always is?"

Then the doctor said he had to analyze his notes and he would be back. Now that seemed like it took forever. Me, Chris and my mom split the bag of Twizzler bites I had brought for James. We gave James the iPod, we all were too tired, Chris fighting to stay awake, to worry if we were ruining his life by letting him escape into technology.

Then the doctor came back. Me and my mom were still sitting in the chairs, Chris stood up and James stayed sitting on the floor with his legs straight out in front of him not even looking up or noticing that the tone of the room changed. The doctor sat in his chair and did that thing where you lean forward with your elbows on your knees and your fingertips touching each other. The doctor repeated back to us everything we had said to him. Much faster and much simpler, but the same things we said to him. He said, "When we put all of these things together it adds up to something that we call 'autism.'"

Everyone knows this feeling. When everything in the room
just zooms into those words and you can't see anything else.

I remember almost all of the things he said to us but they would take too long to list. But most important he told us that cognitively James was on a kindergarten almost first grade level (James was 2 years, 8 months old). But when it came to almost everything else, interpretive and expressive language, gross motor skills, speech, etc., he was on an 11-12 month level.

James at 11.5 months old. The age that his
 language skills were measured to
be at his time of diagnosis.
The doctor told us about his secondary diagnoses of Cognitive Communication Disorder (we basically sounded like white noise to James) and Lack of Coordination/Dyspraxia (that he's clumsy and can't hold his own weight). And then he told us that the recommended treatment was 35-40 hours of in-home ABA therapy, starting immediately.

I asked if we could wait until next fall after Chris had graduated and we had more time and money. I don't think I finished getting the question out before he said no. That we had to start right now. My ears started to ring.

Then we left. We picked up our one-page diagnosis sheet and lots of packets that the Meyer Center had prepared for us. We left them our address and name of our primary doctor. They told us that we would receive the doctor's full diagnosis in 2-3 weeks (a detailed ten-paged packet).

We four went down to the cafeteria because we hadn't eaten for hours. James was wiggling and bored and wanted to get down and Chris was trying his best to hold him without dropping anything. I remember wondering if the people watching Chris knew about what we were just told if it would be any different. We walked through all of the different choices of the cafeteria, me trying to pick out the things I knew James would eat. I was becoming almost frantic because James was getting more and more impatient. We ended up getting him a cup of watermelon and some chocolate milk. We didn't stay, just went straight to the van and left to go pick up Lily.

Lily passed out on the drive back to my parents', with no
clue that her life changed forever that day.
There are a lot of things I remember about the way home, most specifically googling on my phone how much ABA therapy in Utah cost, my throat getting tight at seeing the numbers. And worrying about how we were going to tell our siblings. And everybody else.

We got back to my parents' house, set the twins up with some snacks and a show and went to my little sister's room. Me and Chris sat on the bottom bunk and called his mom. I was warm and calm, we were finally sitting, not moving with the wind rushing past our ears. We put her on speaker and Chris told her what the doctor said. She said, "Ok, we'll get started, we know what to do." I know her and know that she hung up and went to her room and cried. Somewhere in all that I’m sure she told Chris' dad and he cried too.

Lily towing James around in the gator two days after his diagnosis.
It reminds me that this trip was still a wonderful trip and I'm so glad we got to go.

Really bad cell phone pic but
the only one I have of James
from that day.
Me and Chris followed the rest of our normal routine, feeding the twins dinner and putting them in bed. Then Chris and I took a shower and I cried for the first time, but not over the whole autism thing. I cried over two things, dumb girl things, my wedding ring and my high school reunion. The diamond had fallen out of my ring the month before and Chris and I were putting money aside to get me a new one. And my 10-year high school reunion would be the next summer and I knew I wouldn't be going to that. And Chris cried. I don't know exactly why, probably because I was crying.

And that was it. That was Tuesday, August 14, 2012. The day we found out James has autism.

From a fortune cookie I got four days before. I don't think
what our family is going through is suffering, but it's definitely
helping us grow courage.