Last Updated on March 20, 2018

And don’t forget your loved one with autism doesn’t.

The first day of summer snuck up on me. School came and went in a blink. The first summer morning started the same as most others. Rachel woke up, and the demands began. She grabbed her iPad and told me to put her blankies and other accoutrements into the car. (She says, “uh-huh,” and makes a steering wheel motion with her hands.)

I complied and went about my housework. Rachel interspersed my tasks with her needs: peanut butter for breakfast. I made it, but it was in the wrong bowl. She wanted water, but not in that cup and with more ice, no, less ice. … She brought me her bathing suit half a dozen times — her way of requesting to play with water or go swimming.

I glanced at the clock and went upstairs for 10 minutes to change and wash my face. When I came back downstairs, I skidded into a flood. Uh. Oh.

It was time to leave for therapy, and one inch of water covered the bathroom, back hallway, and laundry closet. Fortunately, the dryer was filled with towels from a  flood in the upstairs bathroom the day before. I texted Rachel’s speech and occupational therapists to tell them we would be late then went to work. Twenty towels and minutes later, I proclaimed, “mischief managed,” and we headed to therapy.

Once on the road, I realized we had no iPad, which is Rachel’s communication device. I had to go back home.

Anxiety, panic, irritation, and anger created a vortex in my chest. It pushed up and constricted my throat. Tears pushed out my eyes. Sobs shoved their way out. Why was everything going wrong? Why is my life so hard? Why can’t I ever be on time for anything?

I raced back home, jerked to a stop in the garage, and ran into the house. On the way, I realized I hadn’t pulled into the garage far enough. … Oh well, that’s why garage doors have sensors, yes?

After a perusal of the house, praying the iPad would appear and Rachel would stay in the car, I got back into the car, defeated. No iPad.

That’s when I heard music. Seated calmly in her booster, Rachel pushed buttons on her iPad screen. She looked at me, confusion playing over her face.

Thirty minutes later, we arrived at therapy, but Rachel wouldn’t get out of the car. After receiving my desperate text, her occupational therapist came to my rescue. She patted Rachel. “Poor baby. It’s so confusing to have your schedule changed so suddenly. You must be having a rough time.”

That was the first time I thought about Rachel and her emotional state. School ended yesterday. Her sister went to a slumber party. She woke up, and her world had changed. No one explained it to her. No one drew her a map of what the world would be like. I just expected her to go along.

I thought back to my Relationship Development Intervention (RDI) training. “One of the core deficits of autism is inability to deal with the ever-changing world.”

All morning, I had been concerned about me. How summer would change my life. How difficult a time I was having. I hadn’t thought about the confusion and discomfort Rachel was probably feeling with her routine gone. With her communication deficits and developmental delays, she can’t anticipate new events. She doesn’t know what will happen next. Yes, I can explain and her communication system can help some, but she doesn’t always understand.

So, I have reminded myself to give her extra time to process and be patient with her in the weeks to come. As difficult as summer is for me, it is probably twice as difficult for her.

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  1. Wow! What a revelation. We never know what it is like to be in another person's shoes. So typical that even children who don't have special needs have a hard time with the change of pace and routine. Thanks for the insight.

  2. Rebecca in SC says:

    You have greatly encouraged me! We have a son with autism who is almost 12 years old. Transitions and change are horrible for him. He is moving from elementary to middle school in the fall and is not happy at all. I totallly relate to this post. Sometimes I feel so alone in dealing with him and how frustrated I can get when everything goes wrong. He is getting bigger and stronger every day which complicates things, too. Talk about wrestling an alligator! Thank you for your honesty and willingness to share your life with other moms – it really does help! Blessings