Monthly Archives: April 2017

With kids like mine, Easter Egg hunts need to be a challenge. Not to fear, we have a family farm in Knoxville. Easter Egg hunt in 10 rows of blueberry bushes makes the hunt go on for a long while! The Easter bunny hides them high and low and fills them full of coins. 

Congrats to all the blueberry pickers this summer who find the eggs the kids didn’t! 🙂 

Compression vest makes the difference. 

We took Cub and Roar to our family farm for Easter. It was a wonderful weekend.

 Roar struggles with safety and impulse control on the farm. Any farm is dangerous if you aren’t aware and cautious around equipment, livestock, tools, etc. Roar is NEVER aware or cautious. NEVER. He’s up for anything. We have to watch him like a hawk! 

This trip, I brought his compression weighted vest. When we got to the farm, I put it on him and we went for a walk. He walked the whole time (.25 mile)- no running and no unexpected detours! 

Funny thing is we’ve had this vest for six years and this is the second time it’s been worn. It was Cub’s but he hated it and didnt respond to it. We ended up going with a weighted non-compression for him. This vest has been patiently waiting to be “really useful.” (Sorry for the Thomas the Tank Engine pun) 

So now we are taking it to and from school daily so everyone can experience it’s magical powers. 

Opportunity of a lifetime (mine or Cubs?) 

I was invited to the United Nations World Autism Day (And Luncheon). 

The focus of the event was on autonomy and self-determination. My anxiety is going up from just writing that last sentence. Why?

Cub has an IQ more than two standard deviations above average. He’s a super smart dude. He can learn and memorize anything, if he’s interested in doing so. Awesome right? Why would I be anxious? With an IQ like that, he’ll be fine, right? 

Cub has issues with motivation and understanding the value of proving his knowledge (homework). He doesn’t see the value in communicating and collaborating with peers, viewing them as inferior. 

Cub also has serious social issues. He believes everyone is his friend. He inherently trusts people. Because he doesn’t lie, he believes others don’t either. He isn’t good at using words to communicate his thoughts and feelings. 

His future is uncertain. He has anxiety about adulthood, too. He tells us often that when he is an adult he wants us to live in the house next door. 

Can he go off to college, make friends that are a good influence, maintain good hygiene, use time management skills to complete assigned tasks, absorb course material and test well, produce work materials that prove his understanding, learn what he needs to know to be a successful professional in his field of choice, etc?? Nope. Not with the skills he has now. Challenge accepted. 

Our ultimate goal for our children is independence, autonomy, and self-determination. Charting the path from here to there is hard work. 

Thankfully, the United Nations is asking the world to be more compassionate and to accept the neurodiversity of autism in the professional work place. Only 15% of adults with autism are currently independent adults (meaning free of financial, legal, or decision making support). There are specific initiatives that are putting adults with autism in supported high quality employment. That means, one day, kids like Cub may be able to achieve the illusive independence. 

So, “I’ll start walking your way and you start walking mine. We’ll meet in the middle near that old Georgia pine. We’all gain a lot of ground, cause we both give a little. Their ain’t no road too long when you meet in the middle.” 

What do you need?

Sometimes Cub just can’t get control of his body. His body needs so much sensory input for him to regulate. 

When Cub was 11 months old, he would head bang to regain control during a meltdown. Watching our baby slam his head on the hardwood was heartbreaking and scary. We started early intervention soon after head banging began. 

Now, six years later, Cub has had years of Therapy to address emotional regulation (prevent the meltdown using coping skills) and sensory regulation (meet the body’s need for increased input). 

That doesn’t mean he’s “cured.” It means he has the knowledge to utilize coping skills when he gets upset (with caregiver prompting- co-regulation. We aren’t to independent self-regulation just yet.)  That’s actually why I’m writing this post. We always ask Cub and Roar, “What do you need?” to prompt them to verbalize their needs and access their self regulation “tools.”

This morning Cub woke at 4:00am. He’s been crashing into all the furniture and driving me nuts! Then he said, “My body wants it.” AMAZING. 

I sat down and let it happen. He crashed into the front door, began spinning all the way to the back door and crashed into it. Then back to the front door. He did this for maybe 3 minutes. Then he stopped, sat down on the couch and said, “Lets go. It’s time for school.” WOW. Regulated and ready to go. All by himself. 

This journey with autism is a rollercoaster. I’m choose to celebrate everything. Every success has a story of blood, sweat, and tears but that just makes the success sweeter!