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
|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 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.
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
|My son trying to balance as he walks in the|
sand in front of my mom's barn
|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.
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.
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.
|Lily passed out on the drive back to my parents', with no|
clue that her life changed forever that day.
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.
And that was it. That was Tuesday, August 14, 2012. The day we found out James has autism.