Adapted Communication

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I think it’s only fitting that I start a post about communicating effectively with your children by discussing the merits of ignoring them.  I think that sometimes being a good parent means that you have to do just that.

I don’t mean put them out of your mind or not listen to them.  I mean disregard/override their protests because what they’re protesting is in their best interest: finishing dinner, for example, or taking medicine.  And you’re the grown up.  You know best…right?

But ignoring them can also backfire, when it turns out that the child really does know best, and second guessing their intentions leads to messy situations and guilt.

When my oldest daughter Emma was about 5 years old she complained of a stomach ache.  I ignored it.  She didn’t want to go to school.  She’d done it before.  Honestly, to know Emma is to know that every morning at breakfast she would point out a new ailment.  To this day she has foot/knee/stomach/shoulder/arm/etc pains at each morning meal, and they’re always gone by the evening, dissolving into the ether only to coalesce during slumber to manifest in some new body part at the following breakfast.   The nurse called me at work that day from the school.  Emma complained to her of the stomach ache.  They were calling me in to get her.  I was pissed.

“Does she have a fever?”

“No.”

“She just said she has a stomach ache?”

“Yes.”

I was in the middle of something and so I was impatient and frustrated.  I drove to the school and 20 minutes later I had her in the car and we were driving home.  My mood was stormy.  We drove the mile or two from the school to our house in relative silence until at last we reached our neighborhood.

“Em…there’s nothing wrong with your stomach,” I stated flatly.

We pulled into the driveway.  She threw up everywhere.  Every.  Where.  Instantly guilt flooded me.  I scooped vomit from her car seat and lifted her out, taking her upstairs to give her a bath and clean clothes.  Nowadays, when she asks me to tell her about the time that I didn’t believe her when she said she had a stomach ache I refer to it as, “The last time I ever doubted.”  That’s not necessarily true, but my attitude became much more accepting of her many many ailments, accepting at face value that her knee/ankle/finger/toe/head/throat pains were in fact real and not attempts to bamboozle me or get out of something else.

Her autistic little sister, Lily, does not communicate as well as Emma, however.  Let me rephrase that.  I have a harder time understanding Lily’s attempts to communicate her needs/frustrations.  She communicates extremely well, but differently.

Because I have a harder time understanding Lily, there’s a fine line between being a ‘good parent’ and being pointlessly stubborn.

She’s woefully undersized, and for as long as I can remember my wife and I have stressed and struggled with getting her to eat, and the conflicting signals she gives make it hard to understand just how hard to press her to get “one more bite”.

For example:  For years, Lily would always fight the “first bite”.  She would fend it off with her hand, pushing the fork away, or slapping it from our hands, ducking her head or closing her mouth.  Though constantly struggling with “inability to attend visually” and “poor fine/gross motor skills” her hands would unerringly knock food from moving forks with rattlesnake speed.  It was like that Jackie Chan movie, “The Legend of Drunken Master”…movements seemingly at random, too slow, or too directionless would never fail to knock the food off the fork or plate and onto the floor, frustrating us and stressing us out.  But the reasons we ignored this was because after the first bite was in her…she would eagerly consume the next two dozen until she got full.  After the “No!” and the Kung-Fu, she was happy to eat, often opening her mouth and waiting for food we couldn’t get on the fork fast enough, confirming that we were justified ignoring her protests and forcing that first bite.

Figuring out what should be ignored and what should be accepted is the hardest part, and getting it wrong can leave us feeling very guilty despite knowing that we’re doing what we do for all the right reasons.  Fortunately for Lily, she’s learned to adapt her communication to better fit our neurotypical understanding disabilities.

If anything is ever too scary or too painful or too upsetting she knows the one button she can always push that immediately gets her out of any situation…”I have to go potty.”

Because the only other thing that has caused us even close to as much stress as feeding her is potty training her.  We almost always honor it.  I have personally taken her to the bathroom three times in 15 minutes because we were out in public, and NOT taking her would have meant changing her wet clothes if in fact she did have to go.

At the Nutcracker from our elevated seats, her fear was evident.  “I have to go potty” got her off the balcony and into a safer more comfortable space.  When thunder rattles the windows she will immediately tell us “I have to go potty” to try to make it go away.  When she is being asked to transition into a room with too much activity or space or sound…”I have to go potty” buys her time to take the transition at her own pace instead of ours.

Her communication is fine.  And although it’s not perfect for every situation, we’re learning her language, honoring its intention if not its literal meaning, and creating a less frustrating environment for her at home.  The more we understand, the less she is frustrated.  The less frustration, the fewer behaviors.  Lily has had a really nice start to her summer.  She’s been a really good little girl.

And a big part of it is because her parents are slowly learning to speak her language.  We’re slow, but she’s an excellent teacher.

About the Author

Jim Walter

Jim is both a father and blogger who helps others understand his first-hand experiences in parenting a child affected by autism. Jim’s late wife, Leslie Walter, was the long-time supervisor of Family Partnership Support here at Glade Run.

Read more from Jim’s blog.

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  • Sometimes those pushed buttons are ok! 🙂

    The pushing away the food also sounds like a transition issue, transitioning into a different sensory process – from non-tasting to tasting.

    • Jim

      I think you’re right. I wonder if we should think about using a timer for that. She does so well handling transitions with a timer…maybe it’s as simple as…”When the timer goes off, take a bite, Lily”

  • I love that you and Leslie are so teachable! 😉 And I love that Lily is consistent in her communication regardless of others’ understanding. The dance of coming to mutual understanding is intricate but so, SO worth the effort. It sounds like you are all finding your rhythm together. Bravo!