Walking together and autism. How we got one piece of our life back.

by Jennifer Dyer

Rachel was a darter. If we went out, I had to keep a grip on her hand or hold her. In fact, I carried her and an arsenal of blankets around until she was seven.

It was good for my biceps, but not helping us move toward a safe and independent future.

So, with the help of our Relationship Development Intervention (RDI) therapist, we went to work.

The goals:

Rachel would stay with us in public, not darting away from us.

Rachel would respond to nonverbal cues to remain with us.

Where we began:

We started as a family moving together. Hubby and I flanked Rachel, holding her hands. We would take between one to five steps at a time and stop, sort of like red light green light. The number of steps needed to be random–if we¬†established routine, we would have more problems. The goal was for her to watch us, not count steps.

At first, we didn’t talk, either. She needed to learn to read visual and physical cues.

How it played out in real life:

Everywhere we went, we played this “game” of start and stop. The best places were those with tiles or segmented sidewalks because it gave her a sense of boundaries. But we had to do it everywhere in order to avoid establishing a rigid routine of only stopping on a sidewalk.

Walking into school or therapy or in the house, we would take a few steps and stop. Red light. Green light. Head shake or standing still meant “stop.” Head nod or moving forward meant “go.”

We generalized the start and stop to other activities:

We played with cars. Go. Stop.

We did it with balls. We would take turns throwing balls down the stairs, nodding at her when she could go.

On the swings. Wait for it… Go. Stop.

The whole routine reminded me of training our late Labrador to walk on a leash. With Missy, we learned that she was supposed to watch us for visual cues. If she looked to us as her leaders, she would be successful and not dart in front of cars. She was supposed to sit when I stopped and move when my left foot moved to walk forward. It took hours and months of training and practice, but Missy actually became a good leash walker.

Missy

I had to make the same commitment with Rachel.

Changing my mental state:

In addition to teaching Rachel in small steps to stay with us, we also had to learn a new way of being in public. Before, with her in danger of darting away, I tensed my muscles, clenched my jaw, my thoughts scrambled, and my heart pounded. “Just get in and get out,” was my M.O. Fear owned me.

In order to keep Rachel calm, though, I had to learn to be calm too. If I wanted her to take visual cues from me, I had to cue her to be focused and at ease. If I wanted to reach Rachel, I had to release fear’s grip on me.

Anxiety, in my opinion, is one of the compounding factors in autism. Rachel seemed anxious about everything. She feared the next bark of a dog, the next screech of tires, the next movement of someone nearby… At the same time, Mom feared the next bark of a dog because it would set Rachel off. Mom feared the next movement of a person because it might set Rachel off.

My focus was fear. Her focus was fear. But maybe she was getting some of her fear cues from Mom…

So, how could I expect her to watch me for cues when she was watching everything else? How could I expect her to be calm if I wasn’t modeling it myself?

I learned to take deep breaths and focus on enjoying the moment being with Rachel, not on getting some big task done. That meant a grocery store trip had to be about time with Rachel, not groceries.

I learned to focus on building my relationship with Rachel and to keep the goal in sight.

Since I mentioned Missy and dog training…

I also learned to watch the Dog Whisperer. I say this with a grin, but I have a deeper understanding of the importance of my own mental state after watching Ceasar’s patient, calm, assertive demeanor. Those same techniques he used to rehabilitate fearful or aggressive dogs–and the fearful, unbalanced humans in their lives–helped me to see the things I needed to change in myself in order to help Rachel.

For more interactive, therapeutic activities, see here for a preposition lesson and here for our lesson in bus etiquette.

Coming up next: Taking Rachel to the mall.

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9 comments

  1. So wonderful Jenn. I am always amazed by the time and care you take with Rachel. Wonderful. Now, do you have anything for wild little boys who bring gardner snakes into the bath tub. Perhaps a chanting game…”Is it alive and squiggly when it moves, then keep it outside lest Mom blast through the roofs.” Hmmm… I need to work on my rhyming.

  2. Jennifer says:

    Lol, Kristin! My sister-in-law (the only female in her house of boys) started labeling things. “This is moms. No smelly, stinky, dead or alive things allowed.” I don’t think it actually worked…
    So, my best advice? Use the experiences in your awesome fiction writing… ;-) And look where you step. Eek!
    Now you’ve got me trying to rhyme with you…

  3. Dena says:

    Wow…what a great therapy technique. I wish I had read this when my son with Asperger’s with little (back in the old days before blogs). It would have been very helpful as he was a darter as well. Thank you for sharing your experiences. I’m sure they are helping a lot of people who are struggling with the same issues.

  4. Jennifer says:

    Thanks, Dena. I agree. Blogs are great. It’s like having a support group even when you can’t leave the house.

  5. Brook says:

    I is so hard to let go of the worry. Parents of children with disabilities work extra hard to keep children safe, but also there is the added worry of a society that really doesn’t understand what life is like for special families. I am so glad that you are getting to go out like a family. I pray for many more successful family outings. BTW- no boy has used my ice chest!

    • Jennifer says:

      Brook. :-) I’m glad your labeling of “Mom’s stuff” was successful. Lol. It’s true that many people don’t understand what life is like for special needs families. But at least in the last two decades awareness has grown exponentially. I wonder if it’s the same in general ed in the schools?

  6. Mom says:

    Excellent idea for helping Rachel understand to stay with you. It takes so many baby-step lessons to learn when you are so distracted by the things going on around you in a store; but so important.
    You are right. Blogs are a super way to connect with other people with similar problems whom you would not meet otherwise. Keep up the great work.

  7. [...] If she wasn’t screaming, she was darting away from me like in this story. I couldn’t go anywhere in shoes that did not get traction. Through years of therapy, we slowly worked on her staying beside us. (For more on how we decreased her darting behaviors, see here.) [...]

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