Saturday, March 12, 2016

The Long Road to an Autism Diagnosis

I had the perfect pregnancy with Colton. I couldn't imagine our life would be any less perfect after his arrival. I envisioned him being the perfect baby, I envisioned being able to go shopping and the people around me complimenting me on how awesome & well behaved my child was, I envisioned sleeping 12+ hours a night, I envisioned my parents doting after him... and then I envisioned our future - play dates, vacations, swimming, tee-ball, cookouts, road trips to visit family. All the "normal" things you do with your amazingly well-behaved children.

And then Colton arrived.

And the life I envisioned for us was nothing like reality.

And already my dreams were dashed when at 2 1/2 weeks old, we had to rush home to Indiana to say goodbye to my mom. A HUGE piece of my heart broke the day she died. Without her guidance, I wasn't sure I knew how to be a good mother.

My dreams continued to be dashed - at a month old I boarded a plane for Mexico without my infant by my side for my brothers wedding. At 2 months old, we flew, yet again, to Minnesota when my grandma passed away.

Life was a whirlwind and it wasn't until I headed back to work when Colton was 3 months old that we were finally in one place for more than a week.

And thank God for going back to work. I'm not proud of it - but I was a STRUGGLING mother for the first year of Colton's life. I was attempting to juggle the grief I felt after my mom's death, juggle working full time, and juggle playing mommy to the world's most UNHAPPY baby.

Anyone who knows me knows that the infant stage was FAR from my favorite.

Colton cried ALL. DAY. LONG. And when I say cried all day long, I mean CRIED. ALL. DAY. LONG. What I thought was colic turned into what I then thought was "high needs" when at 6... 7... 8 months old, he still cried day in day out.

At 8 months old, I spent the summer in Indiana with my dad.

That's also the first time I told Vince that I thought Colton had autism.

8 months old.

Now looking back at our journey, so many signs pointed to Colton's diagnosis in that early year of life.

-Crying for 10+ hours a day
-Food allergies
-GI problems
-Developmentally delayed
-Sensory issues

Colton was delayed in every aspect of development. He was slow to sit up. He was slow to grab toys. He was slow to roll over.

When I got back from Indiana, I brought my concerns to everyone I knew. And I was laughed at and told the cliche statements

"every child develops differently"
"give him time, he will catch up"
"he's too young, don't worry about anything until after a year old"

The problem was, he never did "catch up" and at a year old, he still wasn't talking, he wasn't walking, he wasn't pointing, he wasn't playing with toys, he wasn't pretend playing. He had suddenly regressed in the few words he knew. He hated to be touched, held, cuddled. He wasn't doing any of the things "regular" toddlers his age were doing. I knew he was different.

And that scared the shit out of me.

Someone finally took my concerns seriously when at 14 months old. Early Intervention (ECI through the state of Texas) finally came and evaluated him and at the end of our session after he had already qualified for PT and OT, the evaluator asked me if I ever thought Colton might have autism.

It was like being hit by a ton of bricks. 

That was the first time anyone ELSE noticed the things I noticed. And that devastated me. Despite "knowing" Colton was different, I still hoped, prayed that it was all in my head. That I was just being nitpicky. That he really was just young, that I was being overly protective.

We were then fast tracked (to the worlds BEST) Pediatric Neurologist at Texas Children's Hospital in downtown Houston.

And at 16.5 months old Colton was OFFICIALLY diagnosed with Autism and a rare chromosome disorder (1q21 Microdeletion).

It wasn't until December of this year, 8 months after our intital diagnosis that Colton was then evaluated a second time (by the world's BEST) Pediatric Neurologist who actually took the time to get to know Colton, to administer the CORRECT testing that our first neurologist failed to administer (M-CHAT, ADOS, ADI-R), and then REALLY explain to us his findings.

In December 2015, Colton was officially diagnosed as having severe autism. 

Then began our road to ABA therapy...


  1. I'm so sorry that this journey has been so difficult for you all. You are the strongest momma I know!

  2. I agree with Kristina. You are one strong momma!! You have been through some tough times in sure a short time frame. I think about you and your family often. Colton is so very lucky to have you!! It may be tough at times but he knows you love him more than anything in the world!

  3. <3 <3 <3 You are one awesome momma, doing what is best for him. PROUD OF YOU! You are one strong woman, proud to have you as a sister. DZLAM.