Can You Hear Me Now?

It takes a certain amount of skill and creativity to communicate successfully with this kid. We incorporate multiple strategies to explain things to him – simplified language, repetition, verbal cues, written cues, social stories…the list goes on.

But there’s someone who works even harder than us to make that connection. Someone who lives under the daily pressure of being unheard or misunderstood. That’s my kid.

This past Sunday, he gave us a new demonstration of just how tenacious he can be when he wants us to understand him.

He was relentless. This boy was on a mission to explain his needs and persuade us to respond positively.

Unfortunately, this was a case where we already understood exactly what he wanted. The outcome was just out of our control. 

It all started when we had to say “no” to an expected part of his weekend.

***

We spend a few weekends in the summer at a place a couple hours north of our house to enjoy cooler weather. While we’re there, we always go swimming at an indoor rec center around the corner. 

It’s very much become a part of our routine. It’s not even so much the swimming itself – he rarely wants to stay long, just enough to splash through each part of the pool. The splash pad and little slide, lap pool, lazy river, and hot tub. Everything once, and then it’s time to go. It’s just part of what we do when we go up north. 

On Sunday, after a morning hike, the kid decided it was time to “Go swimming!”
Dad called to check the open swim hours.
Uh oh.
The pool is closed due to some mechanical issue. Indefinitely.
There will be no swimming today.

So began our afternoon and evening of obsessing about the pool.

Repeated requests, increasing in volume and panic.
At first he could only alternate between two phrases: “Go swimming” and “Swimming inthepool.”
But we always responded negatively, “The pool is closed today, honey, I’m sorry. It’s broken. No swimming today.”
Self-injury. Pacing. Tears.
We clearly didn’t understand. Was he using the wrong words? Why were we saying no when we always go to the pool? 

His anxiety medication helped to curb the worst of his stress, but it still took repeated, forced-calm assurances – and time – to bring him down.

We explained why the pool was closed today, that no one was there, the door was locked. I told him that we were sad and disappointed too. I promised that we’d go next time. 

Some might think we could’ve just found an alternative pool, but we knew that his “go swimming” really meant going to this particular place. There could be no Plan B. At least not today.

Since concrete visual or text cues often help to solidify things in his mind, I wrote him a note as a reminder. He referred to it often throughout the afternoon.

no swimming

He had calmed down after an hour or two, and sat watching us from the couch, incredulous that we were really not making any move toward getting ready to swim. He seemed to summon up his courage, and when he caught my eye, spoke slowly and distinctly, “Go swimming In The Pool.”

It hurt to be forced to respond to that atypically long and enunciated phrase with “no.”

The kid went along with our distractions through the afternoon. He begrudgingly played with some fidget toys and a new game on his iPad, tolerated hanging out in the no-goggles-required hammock out back, agreed to eat a boring dinner, and allowed us to take him to a nearby dull and unwet playground.

During and in between each activity, he would try asking again: “Swimming inthepool?

And, we would remind him, “I wish we could, buddy. Pool’s closed.”

We got back from the playground to confront the impending doom of the shower-bedtime routine. How could that happen if we hadn’t been to the pool? It was all wrong. The pressure was on to help us understand before it was too late.

He changed tactics, encouraging us to get ready:

“Suits on.”
“Sandals.” 

He went on a hunt for the swim gear that he knew I had packed. But early in the conflict, I’d hidden our swimsuits. Out-of-sight-out-of-mind sometimes helps. (Plus, I figured his next strategy would be to get dressed in swimsuit and goggles and wait in the car until we caved.)

Soon, he pulled me by the hand into the next room, to stand over the suitcase. He had found my swimsuit cover-up in my bag. Damn. He held it out to me, imploring and accusing.

Finally, as I’m doing the dishes, he comes to the end of the counter, looks at the note I wrote about why we can’t go to the pool. He touches the spiral notebook and picks up the pen. He looks at me as he motions with the pen over the paper. 

I apologize again, “You can write it down, hon, but we still can’t go.” He puts the pen down and walks away. When he returns a few seconds later and picks up the pen, I realize the incredible breakthrough that I’m witnessing.

This is the first time he has independently used writing to communicate.

We’ve encouraged, modeled, practiced this – writing and typing and other forms of “augmentative communication” – anything to supplement his limited verbal ability. But he’s never come up with this tactic on his own.

Apparently his motivation is high enough and he’s exhausted all other methods.

I come over to stand next to him. “Go ahead, you can write what you want to tell me.” 

He does.

Go swimming

go swimming

Why can’t this be a magical tablet? One that makes the words written on it come true??

The first time my kid writes in order to help someone understand what he needs, and I can’t fill that need? 

All I can do is praise him profusely, and apologize. Again.

***

This story does have a bit of a happy ending, although still not the one my kid wanted.

His dad has an idea and leaves for a few minutes. It might be late enough now that the whole rec center is closed, not just the pool. When he comes back, we’ve got one final strategy to try. We convince our son to put his socks and shoes on (no, not sandals) and come in the car. “We want to show you something.”

We pull into the parking lot of the rec center. There are a few cars, but the lights inside are dim. My husband parks in the drop-off lane by the front doors. “C’mon, we’ll show you why we can’t swim.”

We couldn’t have asked for a better visual support. Two signs on the front glass doors declare: “Due to a mechanical issue, the pool is CLOSED until further notice.” The doors are not just locked — the handles are wrapped with a thick chain which is latched with a huge padlock. My husband shakes the padlock. “See? The pool is closed.”

I could almost see the image of the padlock and chains click into place in my boy’s brain as the definition of “The pool is closed.”

padlock

 

My kid studies the doors and the lock for only seconds, then returns to the car. 
And, that’s it.
No more “Swimming in the pool” requests. 
Bedtime routine goes smoothly and all is right in the world.

For the moment, we’ve reached an understanding.

***

Road Trippin’

There were so many times when it could’ve gone bad.

Ten days on the road, hundreds of miles, five different hotels. A myriad of changes to routine.

I was braced for complications. My boy has had a rough time lately – stressed at school, agitated at home, anxiety placing him (and us) on a hair-trigger. We weren’t sure if our planned fall break road trip would relieve his stress or add to it. I was cautiously pessimistic. I knew we could have some problems if my kid’s current volatile mood didn’t lighten, especially being away from the safety of home. We wouldn’t know until we hit the road.

The first day, after a late start and a five hour drive, we got to our hotel after sundown. All day, we’d promised the kid – drive first, then swimming. As we checked in, we learned that the pool closed early. Crap. Read More

The Crowd-iest Place on Earth

Do you want to test your tolerance for being inadvertently touched, jostled, and crowded by random strangers?

Go to Disneyland in mid-July.

On the “aversion-to-touch” scale, my kid is in the middle. He’ll allow himself to be touched, many times even requests it—a tickle, a squeeze, a wrestle—but it’s got to be on his terms. He has to know it’s coming.

But when you’re winding your way through a massive sea of people—many carrying oversize backpacks and multiple bags bulging with unwieldy souvenirs; others pushing strollers while wrangling toddlers who insist on managing their own larger-than-toddler balloons or stuffed Pixar characters; not to mention the few patrons walking in zig-zag obliviousness while gnawing on large turkey legs or cotton candy—it’s just impossible to keep from being touched.

Monsters Inc 2319“There’s nothing more toxic, more deadly than a human child. A single touch could kill you!” – Mr. Waternoose, Monsters Inc.

There is no “fast pass” around the summer swarms at Disney theme parks. As a family, we are not early risers—at least not the talk-to-others-in-public-and-ride-roller-coasters type of early risers—so getting into the parks before the biggest crowds was not a realistic goal. We went in the afternoons and evenings. Along with half the universe. Read More

Tickle Me With Your Feet

Last week, I described the unique Soundscape my son creates that fills our house with songs and vocalizations.  He also uses his voice with explicit intent to communicate. Single-word requests are fairly frequent now, but longer sentences and general remarks are still a rarity. The words my son strings together for deliberate purposes fluctuate over time as his needs and interests change. A quick inventory reveals these recent favorites: Read More