Nose Goes

It is refreshing to find that anxiety, depression and general terms of mental health are gradually becoming daily topics in society. Suicides and accidental deaths related to substance abuse are constantly in the media and impacting many of us on a personal level or in our communities. It is important for the dialogue to continue. The only way for people to discover hope is if we can connect with people, share experiences, and stories of perseverance and success.

Anxiety is something every person has experienced on some level. For some, this means worrying about finances, grades, a loved one’s illness. Even constant worries and anxieties can be managed with support from family and friends. Many live with persistent anxiety but have coping skills sufficient to prevent its interference with daily living or a productive life.

It comes down to compromises between reality and expectation. For those who can only relate to anxiety at a mild to moderate level, it is difficult to understand anxiety that is paralyzing.

Last week the U.S. Surgeon General released the following statement:

“According to the U.S. Surgeon General, Dr. Vivek Murthy, social media use among children and teens poses serious risks that science has only just begun to understand¹. The following specific social risks are at hand in individual usage: loss of productivity, cyberbullying, cyberstalking, identity theft, and social information overload². In addition to these risks, social media is associated with a number of issues and potential dangers, including stress, anxiety, loneliness, and depression³.”

I have definitely seen an increase in severe anxiety, especially in my children, stepchildren, nieces and nephews. The people I’m thinking of are all part of  Generation Z. If I’m not mistaken, the degree to which anxiety interferes with daily living in Gen Z is increasing.

Aaron has debilitating anxiety that exceeds anything I have ever seen in any other individual. I have heard the same comment from caregivers, educators, mental health providers, and basically every case manager Aaron has had at the Department of Social and Human Services (DSHS) and the Developmental Disabilities Administration (DDA).

I have learned that the root of the obsessive and repetitive behaviors seen in autism is anxiety. Obsessive, compulsive and repetitive tendencies are evidence that an individual is trying to compensate and control their environment. These behaviors are meant to reduce the anxiety that drives them. Unfortunately, the more obsessively and compulsively the person engages in these behaviors, the more consumed they are with anxiety. The compensatory behavior becomes an additional point of anxiety because they are anxious that they might not be able to complete the ritual. The root anxiety leads to repetitive behavior, which partially eases anxiety. Anxiety over obtaining relief from anxiety perpetuates the compensatory behavior and potentially increases anxiety about the root cause.

For someone with autism, I think of it as The Anxiety Cycle. It is like a wheel with points of anxiety positioned around the circumference. Intermixed with the anxiety triggers are obsessive and repetitive behaviors used to attenuate—or ease—the anxiety.

The cycle may begin slowly. As it spins, it gains momentum. As momentum builds, it spins faster and faster until anxiety reaches such an intensity it results in a full-blown behavior.

Some may not know what I mean by a behavior, but everyone has seen one. In the world of Autism Spectrum Disorders (ASD), a behavior is terminology that indicates a loss of control. Some might call it a meltdown, a fit, or a tantrum. Think of a 2-year-old “going to pieces” when you say it’s time to leave the pool. Then picture what that might look like in a teenager or an adult. Imagine a complete loss of control—a loss of inhibitions—In a 2-year-old. Then picture how the strength of an adult body would dial up the intensity of such an outburst.

During a behavior, Aaron has been known to perform incredible feats like ripping his front door off its hinges, flinging a table across the room with a flick of his wrist, or punching through purposely hardened walls, covered from floor to ceiling, with wainscoting. That is a behavior.

We want Aaron to be able to go out in the community and engage in activities that he enjoys. He experiences anxiety about leaving his home and encounters many triggers that have resulted in behaviors in the past. I will save a full discussion of Aaron’s triggers for other posts. For now, mentioning a couple of his big triggers will suffice. I would say his top three triggers are:

Running out of time

Not having enough money to buy what he wants

Being told no.

A recent trip to a supermarket to buy snacks and a soda is a good example. Aaron had his heart set on a 2-liter soda and some chips. His direct care staff, Jake, told Aaron he didn’t have enough money for the items he had chosen. He tried to offer alternatives like getting the chips, but a smaller soda. Or getting the 2-liter soda, but a smaller package of chips. Aaron was unable to consider the alternatives and insisted he wanted the items he had already chosen. While Jake discussed the dilemma with him, a mother with a couple of small children walked past them in the aisle. Aaron recognized that they were staring at him and responded by cussing and making threats to the mother and to her children.

Within moments, a couple of members of store management and additional shoppers became their audience. Miraculously, Jake was able to point out to Aaron that he was frightening the children, and in danger of being barred from shopping at the store in the future. I was incredulous to hear that Jake succeeded in expediting the purchase of some combination of snacks and getting Aaron out of the store. Aaron was not asked to leave the store and would have the option of shopping there in the future. Though the business would not prevent Aaron’s return to the store, his residential program manager, Kimmi, determined that it would “be awhile” before Aaron could go there again.

Some serious work needed to be done.

The key to reducing the frequency and intensity of these behaviors is to develop coping strategies. A psychologist working with the DDA, a Dr. Nickerson, has been consulting on Aaron’s case. A recent home visit prompted some new recommendations. Dr. Nickerson observed,

“Aaron expressed recognition that he has strong emotional reactions that lead to socially undesirable and dangerous behaviors that are at odds with his personal goals to become a ‘mature’ and ‘independent’ man.”

Saturday, we had a visit with Aaron in his home. His sister, Hanna and I took Aaron to Little Caesar’s with direct care staff, Minshi, to pick up some pizza for our lunch. Aaron wanted to have a pizza picnic at the picnic table in his yard. Aaron went inside with me to place the order. Then, to pass the time, I asked him to sit in the car and listen to music while Hanna waited in the restaurant for the pizza to be ready. Aaron readily climbed in the car with me. He punched “play” and started listening to his music.

“Where’s Hanna?” Aaron asked, vigorously rocking in his seat, pulsing with the beat of the music.

“She’s inside waiting for the pizza. When it’s all done, she’ll bring it out to the car,” I answered.

“Where’s Daddy?” he responded.

“You know where Daddy is,” I smiled with a slight tease in my voice. Incessant question-asking is one of Aaron’s crutches. Constantly answering the same question over and over doesn’t actually reassure him. Sometimes it leads to more persistent questions. We have learned it is to encourage him to self-soothe by answering the question himself.

“Where is Daddy?” I deferred his question back to him.

“He’s setting up my new VCR, so we can watch VHS,” Aaron stated, referring to the VCR Hanna and I bought for him at a thrift store that morning.

“Still two and a half hours?” Aaron asked, revealing the biggest of his worries. His voice had a hint of the anxiety he has about running out of time before he has had a chance to “do all the fun things” he has on his mental agenda before the visit ends.

This time I tried to offer some comfort, “Yep, the visit is two and a half hours,” I said. Technically, a half hour has slipped by, but I avoid saying there are only two hours left in the visit. We have a long history of urgent discussions growing increasingly fraught with worry, as Aaron senses that time is not his friend. I have found that reassuring him the visit will last as long as promised is a good place to start.

This time, Aaron isn’t completely satisfied.

“But it’s still two and a half hours,” Aaron is insistent and emphasizes the still with momentary pleading.

“It’s 12 o’clock, so we have two more hours.” I have found that bending the truth to cajole doesn’t fix the problem. It might devolve into argument, denial and unwanted outbursts. Maybe even a behavior.

“No, it’s still two and a half hours,” the response is even more emphatic.

Soothingly I offered, “Aaron, you did such a great job of being ready when we got there and leaving immediately that we have so much time to do all the fun activities. It’s going to be okay.”

“Mama, can we please talk about it? I’m feeling anxious,” he said, then suddenly stopped rocking. He reached out and pushed pause on the console. “Can we talk about it?” he repeated. “I’m getting worried and like I might get angry. I don’t want to feel like that.”

He didn’t want to “feel like that?” This felt like a huge breakthrough. It had been years since Aaron started verbalizing that he felt anxious and wanted to talk, but he had never said anything to indicate he didn’t like how it felt to get upset.

“Aaron, why don’t you do some deep breathing like Dr. Nickerson showed you?” Minshi offered from the back seat. Leaning forward, Minshi said, “we can all do it together. What do we do when you do your deep breathing?”

“Oh, good idea,” Aaron acted like this was a new revelation—something that had never occurred to him before. Then he placed his finger on his nose. It made me think of “nose goes.” In youth culture, nose goes is a way of deciding who must do something no one wants to do. The last person to place their finger on their nose has to do the undesired task.

“I put my finger on my nose, and…” Aaron said, then drew in a sharp breath and held it for a few seconds. Then he exhaled.

I followed his example. I placed my finger on my nose and breathed deeply, then paused before I exhaled. We repeated this three times, holding our noses the whole time. Thinking we were done; I lifted my finger—It hovered a couple of inches above my nose for a moment. Then I realized we weren’t done, since Minshi and Aaron were continuing the exercise. I quickly resumed the nose goes position and breathed in unison with Aaron and Minshi.

He kept going.

Almost in perfect time—as if reading my mind, Aaron began, “…seven, …eight…nine…” He counted out loud between breaths.

Okay, maybe up to ten, I thought, and followed suit with my breathing. Finger on nose. Rhythmically in and out.

“…eleven…,” Aaron continued.

How much longer, I thought.

“…thirteen, …fourteen, …fifteen!” Aaron suddenly reached forward and pressed play. The music resumed and, without another word, Aaron began bouncing in rhythm again.

I was dumbfounded. Fifteen times? What was up with the “nose goes” hand position? My mind swirled with questions, but I decided to keep them to myself until I could quiz Minshi.

Later, when I could corner Minshi, I asked him who came up with repeating the deep breaths fifteen times.

“I have no idea,” Minshi admitted, “we’ve never done it that many times before.”

I laughed out loud. I was about to ask him about the nose goes similarity, but Aaron was insistently asking questions. I turned my focus on Aaron.

It wasn’t until a few days later, during a Teams call with Aaron’s treatment team that I learned how the protocol had been prescribed. Apparently, Dr. Nickerson has had success introducing new coping strategies, like deep breathing, by pairing them with a physical cue. Derailing a quickly accelerating train of emotions requires the interruption of a whole cascade of bodily and emotional signals. She had already talked about the breathe, hold, exhale procedure. Then, she asked Aaron what physical cue his staff could use to remind Aaron it was time to engage in deep breathing.

Breathlessly, I listened as Dr. Nickerson related her exchange with Aaron. He was the one to select the visual cue to be paired with deep breaths. With assistance from Aaron, Dr. Nickerson wrote out the following procedure:

“While touching own nose, take a deep breath in, hold for count of three; exhale for count of three, and repeat.”

1. This should be practiced daily with staff when he is calm and at baseline. Staff can remind him that this is what he came up with when talking to the Doctor from DDA (his words).
2. When Aaron is emotionally upset, staff can cue this deep breathing by touching their own nose and completing two cycles of the cue and inviting Aaron to do likewise.”

I cannot describe the excitement I felt, considering this new information, about Aaron’s involvement in developing the plan. It was only three months ago that the DDA was holding crisis meetings with a team of twelve people, including me and managers from Aaron’s residential program provider, Hope Human Services (or just Hope). The crisis meeting had been motivated by recurring law enforcement visits, significant property destruction—including broken windows and furniture—and shouting matches between Aaron and a neighbor, to name a few serious problems. The crisis team was earnestly questioning whether Aaron could continue to live in his community, and whether institutional living should be considered.

My heart was broken. Nonetheless, we were out of ideas. Hope was doing everything in their power to stabilize Aaron. Rotating staff in who had extensive experience working with clients on the autism spectrum, assigning 2-to-1 staffing during peak hours of activity, providing training and retraining of staff. I was at a loss.

I began praying for help. Aaron is always in my prayers, but I told God we were out of ideas. I told Him “The next step is an institution.” After all our hard work—after so many years of Aaron’s hard work—how could it come to this. Then I waited. We kept trying.

Then all of this fell into place. Coincidence? Luck? Good karma from a providential universe? Some are not able to give victory to God. I respect that. Many will give the credit to some unknown, benevolent Higher Power. You can call it what you want. I call it a loving Father in Heaven who knows Aaron. I felt a budding miracle during the first crisis team meeting when I recognized how many people were gathered for Aaron—every single person was rooting for him. I sensed the deep caring each had for my young man. I felt buoyed up by the collective process of identifying what Aaron needed most.

Resources were offered by DDA, and Dr. Nickerson’s team was deployed for a home visit.

That was the beginning of the miracle.

It doesn’t matter how bad it gets, or how dark the road appears ahead. There is hope in asking for help. Reaching for others and admitting you have nothing—no resources—left.  

Mere mortals can work miracles. Maybe God works through us, making us His hands.