Autism Awareness Month: Robbie’s Story 4/20/16 updated and reposted

Post from 4/20/16
Reposted for Autism Awareness Month
With Robbie’s permission, I’m posting about Autism today. I have presented to teachers about autism and I’ve taught many students on the spectrum. 
I’ve talked about writing a book with Robbie, but I’m not sure anyone wants to read another autism story. (Update 4/2/20…Robbie asked me to write his life story before he died. I still haven’t been able to start this, but someday I hope to write his book because he has an amazing story.) 
When he was younger if you told me that we would someday face a crisis more stressful than autism, I would have told you that you were crazy. Cancer has changed that view. I only wish we had the same support for autism when he was young that we do for cancer now. 
What the doctors said his first few years…
He isn’t talking because his sisters are talking for him. Some kids are up at night past the first year. (In his case until he was 6) If he doesn’t like noise it is probably because of all his ear infections. Banging his head on the floors and walls is just for attention. Not looking at strangers is just being shy. I could go on and on. 
Why is he crying again? Maybe boys don’t like to be held as much as girls. What are the best strategies for a trip to the store…to the library….to church? When is he going to communicate with us? What intervention or program should we try next? What specialist should we take him to see? 
Examples of leaving the house….
Trips out of the house were well thought out missions with the girls being advised in advance of our plans. If your brother starts crying or screaming, we are going to leave everything behind and race to the closest exit. This could mean abandoning our shopping cart at the grocery store or leaving the books we wanted at the library. The girls learned early how to reserve books online, so they could have more books. I was jealous of the mothers taking their time, carrying books for their kids, and reading to their children. 
One way we coped with the his first few years was through humor. Ruth once wrote a hilarious paper for school about her brother’s fear of squirrels. There are too many stories to list on the blog, but often the best choice was laughter. 
We started to notice his unusual abilities in math by age 2 when he programmed our stereo CD player to play his favorite songs. When he was 3 he could tell someone their age if they told him the year they were born. By age 4, he started telling the checkout clerks the exact change they needed to give me. We bought his first math workbook. Best purchase ever! He was happy for hours doing math problems. Keep in mind that he was attending an early childhood special education class due to his significant language delay.
It is fair to say that I am that “high maintenance” parent. He was caught up academically by 3rd grade and passing his peers in math and science. Yet he still had sensory sensitivities and his social skills seemed to be lagging behind. I’m fast forwarding past all the early grades, because it would be too long.
It  was middle school before we learned about aspergers.  One year I bought all his teachers a book about Aspergers by Tony Atwood. No one sent me thank you cards, but I hope a few of them read the book. We also bought him a cell phone, so he could call us if he needed anything. This was after someone blocked him from riding the bus home. Bullying is a huge problem for kids on the spectrum.
His junior and senior years he attended a school for gifted kids called Oklahoma School of Science and Math, which is a fantastic school with a wonderful staff. 
I would like to meet the first teacher that came to our house to work with him at 18 months. She told me that not every child is going to be a rocket scientist.  Trust me, there are many adults on the autism spectrum working for NASA. 

4/2/20 UPDATED 

2016. He graduated from the University of Tulsa with a double Major in Mathematics and Computer Science. His Senior year he had to finish his classes remotely while going through chemo, being sick, surgeries, hospital stays and multiple ER visits. He never gave up. He was too weak to attend his graduation and never got back to his university.

2017 Interviewed with Google in San Francisco by multiple teams and was given a contract and offer, which he signed and then was too sick to go. Google continued to send him offers even up to his last month.

Autism didn’t stop him from reaching for his dreams. Cancer also didn’t stop him from going for his dreams. He was still asking about treatment options the day before we lost him. He had more strength than all of us!

Rest in peace my sweet boy. ❤️No more autism….no more cancer…. healthy and free. 

2 Comments Add yours

  1. Pam says:

    Thank you for sharing Robbie's story…


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s