Headphones, or Going Away and Breaking Established Patterns Part 2

I don't know if this has happened to other families, but I assume that it has -- when you leave home for more than a few nights, your normally change-resistant child suddenly becomes flexible in adapting to the new circumstances. 

One memorable instance of this in our life happened when Singularity was almost four years old. I was still nursing him, though we had been struggling over working on weaning him for over a year. Up to a point, I didn't mind, as I thought that he still needed it, but eventually I was ready to stop. Singularity resisted. 

Then we went to visit my parents in Pennsylvania, and Singularity just forgot about it. He didn't mention it once in over a week. When we got home, he looked kind of confused and asked to do it again, but I told him that we didn't do that any more. And that was that. 

Flash forward almost six years: I have been trying for years to convince Singularity that he did not need to sleep in his headphones. Really, it is quiet in his bedroom at night. Unexpected noises at night are rare. I even had a conversation with Singularity's pediatrician about it, as I had become concerned that years of intensive headphones wearing was going to affect the growth of Singularity's head and jaw. (The pediatrician wasn't worried.) But Singularity resolutely insisted on donning the headphones as part of his bedtime routine. . . 

. . . until we went to visit my parents last month, when it was quite warm. I don't know if Singularity was hot, just forgot to put the headphones on, or a little bit of both, but for most of that visit he did not wear the headphones to sleep. Back home, he wants to wear them again when he remembers, but he usually forgets, so I have just been leaving them tucked away unobtrusively in a corner of his tent. 

I don't think that I have ever shown Singularity's bed to the blog: 

Yes, Singularity sleeps in an old Ikea kiddie tent on top of his bed. According to one of our ABA therapists, it is not uncommon for kids on the autism spectrum or with sensory issues to prefer to sleep in the more enclosed space of a tent. Singularity also sleeps under a full-length body pillow.

But I digress. I think that the Singularity will probably stop wearing the headphones to bed sometime soon. And then it will be time to start working on the next thing, or at least planning for what to change on the next trip we take!

The Klailklop Glass, or a Love Letter to Klailklop

Recently I have been thinking about Klailklop's water glass. 

To understand the significance of this glass, we have to go back to Singularity as a toddler and preschooler. I've probably mentioned before on my blog that Singularity's development has followed an atypical schedule. He learned to talk at the age of 14 months, to walk at 16 months, and to read at the age of 18 months. Seriously, you could almost see him making a conscious decision that talking was going to be more important to him than walking. And the reading at 18 months? A definite case of hyperlexia. We played with letters in the bathtub, changing a consonant or a vowel, making up new words, playing "make it say". 

(Oh, it was so much easier to take care of the hair then!)

Singularity even developed a peculiar gait, due to the fact that he always had a book tucked under his right arm. I will probably write another post on hyperlexia sometime in the future, but for now suffice it to say that Singularity was highly motivated by letters, words, and reading. And, beside books, what kind of a gift do you give a child like this? A label maker of course! 

Singularity was three years old at the time. It is easy to pinpoint this in time, as that is the age at which he named us Kija (me) and Klailklop (his father). He had a name for himself, which feels too precious to share. 

Singularity's little hands weren't strong enough to operate the label maker, so Klailklop and I had to make the labels for him. Round two of "make it say"! For a while many things around our house wore labels, including Klailklop's drinking glass. 

And that label stayed on Klailklop's drinking glass for years after Singularity no longer called his father Klailklop. Klailklop kept that label on his glass through the six months from October 2012 to March 2013, a time during which Singularity would not speak to himat all. The label  stayed on the glass as Singularity and Klailklop slowly rebuilt their father-son relationship, and it is still there. 

I have come to see that glass as a symbol of Klailklop's hopes for his relationship with his son and as a vessel for his love for Singularity. Klailklop felt rejected and pessimistic about our family situation for some of those years, and yet he carefully washed the glass and ensured that the label remained intact. The Klailklop glass seems to have served its purpose, and now he can pour his love back into his son. However, I hope that he never decides to get rid of it, because it is now also a symbol for the parts of Klailklop that I love the best. 

The Zones of Regulation

In my previous post, I shared my "Red" poem, and I wanted to do a little more to explain its connection to my blog's mission of celebrating Singularity and sharing my thoughts about autism. 

Singularity has been seeing Lila for occupational therapy for several years. They have worked on many things over time, including vestibular and perception issues. Lila is currently working with Singularity on a curriculum called The Zones of Regulation, which was created by Leah Kuypers, another occupational therapist who worked with Singularity when he was much younger. 

As you can see from the graphic below, in this curriculum different emotions and states of being are associated with different colors:

I think that this is an excellent curriculum. At the beginning of the workbook, the focus is on associating emotions and states with the zones, then moves on to recognizing one's own internal state. For Singularity, there is often an issue with either under- or over-arousal. Singularity's work with Lila has improved his awareness of his internal states. They are now working on recognizing external and internal triggers that send Singularity into the yellow and red zones, and then they will move on to strategies for self-regulation so that he will be able to help himself to return to the green zone.

So, in my daily life with Singularity, I have come to associate the color red with the red zone, and this has somewhat overshadowed my earlier positive feelings aroused by the color.  

What zone are you in?

Red

Red 
(with apologies to Madeline L'Engle)

The Chinese use red as the color of celebration,
auspicious new years,
fortuitous marriages.
The bride wears red.

I look good in red.
Red is the liquid ambar tree I can see from my bedroom window in autumn.
It is rich and beautiful.
Red is energy,
the sun shining through the blood vessels in my closed eyelids.
Red feels warm.
It is a confirmation of being alive.

But red could also be the color of 
agitation,
   terror,
      overstimulation,
         dysregulation, 
            seeing red.
Red is the matador’s cape waved in front of an angry bull,
a state you do not want to be in, 
some kind of dystopia
into which your neurology suddenly tessers you,
through a mysterious wrinkle in time.

It is so hard to get back out of the red zone.

Red used to my favorite color, but now I am not so sure. 

It is so . . . primary.

I now gravitate towards something more complex, 

yellow-green perhaps, or yellow-orange.

My wedding dress was yellow-green, 

Still life-affirming, but not

Red

This poem is another product of the Powder Works Writers Group. At a recent meeting, we all used "red" as a prompt, and as usual it led each of us in an entirely different direction. For another take on the color red, please see Zoe Francesca's poem at Pink House Poetry.

Finding Common Ground

"Did you see me swimming?" squeaked Roo excitedly, while Kanga scolded him and rubbed him down. "Pooh, did you see me swimming? That's called swimming, what I was doing. Rabbit, did you see what I was doing? Swimming. Hallo, Piglet! I say, Piglet! What do you think I was doing! Swimming!"

Most Wednesdays over the school year that recently ended, Dmitri has participated in a portion of Singularity's ABA session. I've written previously ("The Perils of Perseveration") about the way that Dmitri had become stuck on something and matters escalated. 

A while ago, we had a pretty a wild session. Present were Singularity, me, the ABA therapist, Dmitri, Dmitri's mom, Alfred, and Alfred's mom, and then later Dmitri's little brother. It was a lot to keep under control, and it was quite fun in its own way. 

On the bike ride that 6 of us went on, Dmitri understood that most of us didn't want to discuss the TV shows he most likes to talk about, so he tried to find other things that we had in common. He arrived at Winnie the Pooh. Now, I love Winnie the Pooh. I love his gentleness, his innocence, his big heart. 

Dmitri wanted to talk about advanced literary concepts such as whether Rabbit acts a foil to the other characters. As Dmitri tends to perseverate, talking with him about any chosen topic can eventually become a bit trying, but I believe that whenever Dmitri finds himself staring at another person across a conversational abyss, he tries to build a bridge of a shared text or film or television show that can be discussed and analyzed. This is his social strategy, just as it is for many neurotypicals when beginning to get to know someone better.

Quite a lot can be learned about a person and their values from their opinions about different characters in a story. If I love the character of Baby Roo, it could mean that I love his inquisitiveness and joie de vivre; he just does things that the rest of us find difficult, because he doesn't "know any better". ("Did you see me swimming?") If I feel sympathy for Piglet, perhaps I have felt fear and had to courageously overcome it. If I enjoy Tigger, even as he is annoying Rabbit, perhaps I have felt boisterous and loved feeling that way. 

I am not sure what Dmitri has learned about me, but I have come to see Dmitri's getting stuck on a text not just as his coping strategy, but also as his attempt to connect to others in a real and deep way. 

"The Trouble with Brain Science"

In my recent post "Fact or Fiction: MSG-free Diet as Cure for Autism?" I complained about the lack of objective criteria for diagnosing autism:

***

In my view, one of the main problems in the diagnosis and treatment of autism is that the diagnosis continues to be based on observable behavioral criteria -- does a person display atypical social behavior and language and perseverate over special interests? It is a very superficial way of making a diagnosis. There could be any number of underlying causes of the behaviors. Unfortunately, science does not yet have the tools to diagnose according to any more objective criteria. Autism research is being pursued in many different directions, and brain science is still at an early stage. I do not claim to be an expert on this. But it does seem clear that there are many sub-types of autism that have distinctly different flavors. These different forms of autism are all called autism, currently, although they probably have a wide variety of causes, because they have similar behavioral hallmarks. Many different genes have been identified as having a role in causing autism, but science does not yet know how they interact with each other and with environmental conditions. 

***

And so I was happy to see Gary Marcus's recent op-ed in the New York Times addressing basically the same topic: "The Trouble with Brain Science". Marcus isn't talking specifically about autism, but of brain science in general. 

The Mating Call of the Lawnmowers and Leafblowers

I wake up in Klailklop's childhood home,
sun shining through the window,
Singularity wrapped around me --
he couldn't sleep alone in this unremembered place.
I hear the songbirds,
until I can't.
Their warblings have been eclipsed
by the mating call
of the lawnmowers and leafblowers.
What is it about these damn suburbs?
People surrounded by lawns, flowerbeds, woods,
not taxis and towers,
enjoying the quiet of nature.

Lexington, Massachusetts
June 2014