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  • Kristine Mastronardi

Respecting the Autism #redinstead



It is a scary time right now with COVID - 19. As Jake has said, in the video below, it is not just about the worry and stress of getting the virus, we also worry for our loved ones and we mourn for the thousands of people affected by this devastating virus. We pray for the healthcare workers on the front lines and the everyday heroes at the grocery stores.

The break from our everyday routines and self isolation can be hard on us all. The first week we had to self isolate and stay at home was particularly stressful for Jake. We were fortunate that after years of work on handling dynamic situations Jake was able to successfully adapt to the “new normal.”

One particularly hard night Jake decided to get take out and came home with a burger and massive amount of french fries.

“Hmmm, those fries look good!” I said to Jake, peering over his shoulder. “Can I have one? “ “No!!” he shouted.

I was taken aback by this and persisted. Not realizing the weeks worth of stress had culminated into this moment. Jake’s resources were depleted. He was stressed, he was tired, he was hungry. He did not have the mental resources to deal with me and my seemingly simple request of asking for one, single french Fry.

I backed off but not before Jake was pushed over the edge. Jake recognized that he was over the edge and deployed his strategy of leaving the house and going for a walk. That escape always helps him to distance himself enough from the situation to calm down.

As a guide and NT I totally messed up by pushing him to “share” with me. It’s hard to be a guide sometimes. To me it was a simple request but I didn’t look at the big picture considering all the stress Jake has been under.

Even recognizing that stress is hard for me as a NT person. I need to respect the autism, and accept the autism and that can be hard. Luckily Jake’s sister advocates for him and sees the perspective more from Jake’s side as a sibling, and not as a mom.

Jake was gone for hours, he passed the 8 pm curfew set by the town and I was worried. I was planning to go out looking for him if he didn’t get back by 10 pm. I imagined being pulled over by a police officer.

“Ma’am you know there is a curfew, where are you going?”

“I’m looking for my adult autistic son, officer. We had a fight and he left.”

“What happened?”

“Well, I asked him for a french fry…"

I laughed at myself at the absurdity but I CAN laugh these days because I know Jake will come back. I know we will repair this “breakdown” together. I know we will come up with a strategy that is both of our responsibility.

Jake will share his future french fries and I will allow him the space he needs to decompress and feel safe to say, “No, I don’t want to share right now.”

There is always that fine line we have take as guides and teachers

We need to know when to push, when to back off and we always need to respect each other and our right to say no.

Jake will be forever my teacher as much as I am his.

Stay safe out there in these difficult times. Stay safe, stay strong and be gentle with one another.


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