Our journey with autism started long before an official diagnosis. It started slowly. One day at a time we started to notice things that seemed “off” around 18 months. Looking back today I realize there were signs even earlier.
Diagnosis was a full year journey. A full year of appointments and wait lists and questions. A full year of doubt and sadness. A full year of fear.
This is the last picture I took of Grayson before diagnosis.
We were driving to Iowa for our 7 hour diagnostic appointment. I remember looking back at him and knowing that I wanted to capture him like this. One more photo to put in the “before” file. And I know that sounds silly. Because I know we were already living with autism. The “before” does not refer to autism. It refers to knowing.
Grayson’s diagnosis came on February 27, 2015. He was 2 years and 10 months old. His first symptoms were speech delay, aggression, restlessness and excessive gesturing.
Grayson started intensive ABA treatment on June 6th 2015. For the first 3 years he received 24 hours of ABA therapy, 2 hours of speech and 1 hour of Occupational Therapy every single week. In his 4th and 5th year in the program he dropped from intensive to intermediate. This was more about “schedule” than anything else. Grayson could not maintain the minimum required intensive therapy in addition to full days at school. After 5 years in ABA Grayson discharged on June 6th, 2020. The exact same day he started 5 years prior. His discharge was more about COVID 19 and less about his needs. The gap and absence of ABA in our lives is still felt in a very big way.
Grayson attended a Montessori pre-school from age 2 to age 4. He received full-time ABA support in school. At age 4 he transitioned to 4K in our public elementary school for a 1/2 day 4K program where he was supported with a one-on-one aid. He still attends public elementary school with aide support throughout the day, along with speech and occupational therapy. My husband and I have never once regretted our decision to main stream school him.
Some of Grayson’s symptoms have changed over the years. He still struggles with aggression. He is able to fall asleep and sleep through the night with Melatonin gummies. If he does not take Melatonin he is restless and fights off sleep. Grayson communicates through a lot of scripts and echolalia. He also stims certain sounds and gestures. Grayson struggles with restrictive interests in the activities he participates in and the foods he eats.
Grayson was also diagnosed with both anxiety and ADHD in 1st grade. We work with an incredible prescriber who specializes in high-functioning autism when other disorders are present.
Grayson is wildly passionate. He is affectionate and shows genuine care for his family and peers. He is incredibly smart. He remembers everything. EVERYTHING. Even the smallest of details. Sometimes I can actually see and hear his brain at work. It is as if there is a little buzzing sound emitted as he works through his collection of information and memories.
Autism is a huge part of our life. And a huge part of our son. But it is not the only part. We choose to embrace all of the pieces of Grayson. And we are so thankful that he shares all of his pieces with us.
This is autism. This is Grayson.