Interactive Play. Interactive Play That I Didn’t See

I did not witness the event described herein. Samara did. And I was so excited that, when she finished telling me, I made her narrate the entire tale, again, to my mother and Adrian, via speaker-phone. The hearsay version follows—

The setting was a 67-degree New York City afternoon, yesterday. Samara took Martin—he was exhausted from the overnight flight home, yet alert and adventurous—to play at a park with a substantial sandbox. Martin managed to get hold of the only on-site bucket and shovel. He had filled the bucket with sand and was using the shovel to scoop it out when another boy, perhaps four years old, approached and wanted the bucket.

Martin’s usual response to such a situation has been to abandon the toy to the child who demands it, and perhaps to start crying. Yesterday, instead, Martin engaged in some sort of wordless negotiation with the older boy, which resulted in the two of them sitting down, the bucket between them. The older boy cupped his hands to dump sand into the bucket; Martin used the shovel to scoop it out the other side. According to Samara, the two preschoolers cooperated this way for some ten minutes.

Non-verbal communication.

Interactive play.

Joint attention.

That’s my boy.

An Aimless Post, Most of Which I Wrote on an Airplane

Recovery requires a sea change, from autistic behavior to neurotypical, that as far as I can tell takes years under the best circumstances. There will be no single morning when Martin will wake up perceptibly different from the night before. True, we notice gradual alterations: moments when I remember some behavior Martin used to have that I haven’t witnessed in weeks; instances when Martin surprises us with a new skill, albeit one that won’t reappear again for months; once-daunting tasks, like clearing airport security, that Martin manages now with ease. And there are physical signs, such as sleeping and scratching.

But for the most part Adrian and I operate on vague notions, such as whether the day passed easily, or how Martin “seemed,” or whether he carried himself like other kids.

Three nights ago we left Martin with my mother-in-law, who was traveling with us, and had a dinner date. We talked about Martin, as usual, and we agreed that he does seem better. Neither of us had any precise reason. I mentioned that Martin appears steadier on his feet and more organized in his movement; Adrian brought up eye contact. No one denied that Martin has thrown some tantrums this week, or that his language remains so-so. Yet our notion was one of improvement. Indeed, Adrian called this “in terms of recovery, the best week [Adrian has] seen in months.”

By yesterday Martin was exhausted, and sick of traveling, on our last in Argentina before the overnight flight back to New York. He was fussy and unreasonable. He insisted on being carried any distance longer than four feet. Still, he brought us joy. We had him dressed in a miniature Leo Messi jersey, which caused our lunchtime waiter to like him immediately. (The Messi-jersey trick, I’ve determined, works on nearly any Argentine. We’ve enjoyed repeated calls of “¡Qué precioso!” and “¡Hay viene el Lionelcito!”) The waiter doted on Martin, who smiled and ate with his fork like a big boy. After the check was settled, the waiter held out his hand to Martin and said, “¡Ciao, amigo!” Martin grasped the offered hand, made firm eye contact with the waiter, and replied solemnly, “Ciao.” It was another of those like-any-kid interactions.

Where am I going with this post? I don’t really know, as I don’t truly know where we’re headed with recovery. I guess I want to say that things are looking up.

But it never pays to get ahead of myself. That’s a recipe for heartache.

Symptom Check, 26 November 2011

Autism is defined by symptoms, and I observe Martin’s daily, so it seems reasonable to share regular updates on where Martin’s symptoms stand. Here is the status check, for Saturday, 26 November 2011.

Sleeping: No issues. We’ve been traveling more than a week. Martin has taken advantage of every hour of rest we’ve afforded him. A couple nights, when we were on a plane or rising early to catch a plane, he did not get nearly enough sleep. Our fault. Other than that, he’s been going down for twelve hours. He has appeared tired/fatigued during the day, which may be attributable to heat (it must be 87 degrees in Buenos Aires today), pollen (falling like raindrops from the blooming trees), or general over-excitement.

Attention: Not great. Name responsiveness is low. It’s been tough to get him to focus, or even to look at the camera for pictures. Granted, he’s been photographed eight million times in the last week and may be growing tired of it, but he usually does better.

Mood: Also not great. Cranky. Clingy. Doing a lot of complaining that he wants to “go back to the hotel” or “go back to New York.” I don’t blame him; traveling makes me cranky, too. And the appeals for hotel or home seem to be obvious responses to unfamiliar situations, and what Martin must perceive as chaos around him. Plus, his bad mood has resulted in some solid sentences, like, “I want to get in the airplane and go back to New York.”

Language: So-so. On the one hand, pronouns continue to be an issue. Lots of echolalia and its corollary, using “you” instead of “I”—such as “You want more water” when he means “I want more water.” On the other hand, we’ve been getting some unexpectedly original sentences. In addition to the aforementioned pleas to go home, there were “I see mountains through the window”; “There’s a flag on the boat”; and “That’s one sailboat. That’s two sailboats.”

Self-stimming: Today he’s been thrusting his jaw forward, some. Also he’s been tilting his head back to stare at the ceiling and tensing his facial features. But overall we’ve seen relatively little self-stimming this week.

Physicality: Of late, I think we’ve made the most progress in physicality. Martin appears more aware of his body. He’s now telling us when he’s hungry (although he doesn’t generally use the word “hungry”; in its place he says, “You [I] want to eat”). He’s doing a little better at keeping his “toddler training pant” dry, so long as we remember to sit him on the potty often. He’s steady on his feet and pacing himself well when holding hands with me or Adrian. When he walks or runs alone, there is some disorganization, but less than previously; in terms of movement, he looks more like a neurotypical kid.

Breakthroughs: Two points to note. First, for months, we’ve been working with Martin on learning to pucker and blow. He can blow a pinwheel now, though only in short bursts, and not a deep, extended exhale. This morning he discovered blowing bubbles with his straw in his beverage. Hurray for Martin! And what a pain for me and Adrian! All he’s wanted to do today is blow bubbles; I’m not sure he’s actually drunk an ounce.

Second (caution! graphic scatological content to follow:), after lunch today I sat Martin on the potty, where he “did his poopies.” When he had concluded (or so I thought), we had this exchange:

Me: “Are you all done?”
Martin: “No.”
Me: “Do you have more poopies?”
Martin: “Yes.”
Me: “Well, go ahead.”

Indeed, we had this exchange six consecutive times, and each time Martin in fact did have another bowel movement. We must have been in the bathroom fifteen minutes. Finally I asked again, “Are you all done?”, and he said, “Yes,” and climbed down from the potty. This may not sound like anything worth writing home about—or in my case, worth subjecting my blog readers to—but it really speaks to the improving body awareness. Good work, Martin.

Travelogue

Traveling is no good for Martin’s recovery. I have to admit that. In the seven days we’ve been traveling, I’ve not once managed to complete all 16 daily HANDLE exercises, and RDI has fallen by the wayside. I’m out of fiber powder and two of his supplements. I brought only one magnesium variety and realize now he should be taking two.

We have limited access to freshly prepared organic foods that meet Martin’s dietary requirements. We’re in Argentina now; Martin is lunching on barbequed grass-fed beef, which is superficially acceptable, but the chef cannot verify whether the cows were hormone-free, or the origin of the animal’s feed, such as whether it was grown with pesticides. These are inquiries to which, in New York, I could chase down answers.

And then Martin is overwhelmed. We’ve broken his routine, thrust him from one unfamiliar situation to the next, presented new face after new face and directed him to say hello.

We’re weathering the attendant minor freak-outs okay, but I’m not going to look for any progress from this week. We may even regress, a bit.

I’ve been contemplating what that means. I want to accomplish Martin’s recovery as quickly as possible, in a trajectory as straight as possible. Gallivanting around Latin America is hindering those aims.

On the other hand, my primary goal is and must remain Martin’s ultimate recovery, however long that takes and however jagged the process. What we do in these years—whether we’re talking 12 months, or 120—will affect the entire future course of Martin’s life. Recovery. Now, or later.

I’ve posted on the value of undertaking Martin-free activities. I believe that travel falls into this category. It is not reasonable to expect Adrian to pass X years without bringing his son back home to show him off. It is not reasonable for Martin to wait until he’s closer to neurotypical before he can play with his cousins. It’s not reasonable for our family to confine itself to the tri-state area when we want to head out and play.

So we’re managing diet and supplements and exercises as best we can, minimizing stress where feasible, and more or less writing off the week, recovery-wise.

Except for this: Enjoyment. Stamina. For me and Adrian, a little recovery of our own.

That also assists in the greater good.

¡Hola! I’m Doing Well

As I mentioned, we’re vacationing in Adrian’s country of origin. Martin performed at the top of his game our first day here: fully attentive, interacting with his cousins, chatting with adults. Since then, I think, the change in routine, air thick with pollen (to which Martin appears sensitive), and general chaos of travel have taken their toll, and he’s faded a bit. So I was particularly pleased with this interaction at a museum today. I’ve highlighted the best parts in italics:

Adrian, who has been carrying Martin on his shoulders, plops him onto a bench, next to another boy, perhaps four years old.

The boy greets the three of us: “¡Hola!”

“Hola,” Adrian responds. “¿Cómo estás tú?”

“Bien,” says the boy.

“Martín,” Adrian prompts, “¿le puedes decir ‘hola’ al niño?”

Martin looks at the boy and says, “¡Hola!”

“¿Qué es eso?” the boy asks, motioning toward a toy in Martin’s hand.

Martin comprehends the question immediately and responds correctly, “Un avión.”

“¡Mira!” the boy says, turning toward a video screen showing footage of a military exercise. “Son soldados.”

Martin makes no verbal response but likewise directs his attention to the video screen. They watch together for a few seconds, and then the boy wanders back to his parents.

Adrian and I are left beaming.

Score: one more near-typical interaction.

The A-ha Moment: Part Two

(This is the second in a series of posts, begun here last month.)

“There’s something we’re missing,” I said to Adrian after I read the article about a six-year-old boy whose autism had disappeared. “There’s something more we can do.”

I was ready to do whatever it took, to make any sacrifice or pay any price, to get back the bright and engaged boy I knew Martin could be. But I had no idea how, or which direction to turn.

After Martin was diagnosed, Adrian and I had got, from friends and family members, recommendations of people we “really should talk to.” I’d never followed up; I tend to be a go-it-alone kind of gal, and didn’t see myself finding solace in an “autism parent support group,” the path I thought I’d be walking if I started reaching out. Now, feeling lost, I decided to exploit some of those contacts.

My first call was to the wife of a once-removed business contact of Adrian. Neither Adrian nor I had ever met this woman, or her husband, who live in another city. I’ll call her Annie.

Annie answered the phone at the time we’d arranged by email, and I explained the situation: Martin’s diagnosis, the behavioral therapy, my frustration about not doing enough.

“I’m glad you contacted me,” Annie responded. “My son is nine years old, and recovered from autism.”

Those words. He’s recovered?

“Yes, completely.”

I grabbed a pen and notepad. “Tell me more?”

Annie, God bless her, spent a full hour on the phone. She had “dropped out of life” for four years, she said, in order to recover her son through every medical, holistic, traditional, and behavioral approach she could find. It had been hard work, especially knowing whom to trust and what to try. In the beginning she’d been told that only behavioral therapy was available. She hadn’t considered biomedical recovery until a friend got her interested in the topic. Once they started biomedical recovery, the difference was amazing. The traditional doctors told her the process would never work. She ignored them. Her only standard became whether a treatment might hurt her son.

(As I’m writing this, from my scrawl on that yellow notepad, ten months after the conversation, I hear in Annie’s words exactly what I would tell a parent if one were to call me today.)

Annie told me about RDI therapy instead of ABA. (She had pulled her son out of traditional one-on-one ABA therapy, a decision I also made some months later.) She told me about the Yasko profile, Generation Rescue, genetic mutations, hormone treatments, available therapies. My head was spinning. The key, Annie concluded, was to find a doctor with strong traditional medical strengths who nonetheless would ride the cutting edge of new treatments. She gave me the name of a doctor halfway across the country, an associate of the excellent Track Two doctor we now use for Martin.

I hung up the phone in a different place than I’d been an hour earlier. I spent the afternoon chasing down websites and phone numbers. I printed pages and pages. By the time Adrian arrived home that evening, I had a full presentation prepared for him.

I began with, “This is what we’re going to do.

Quote of the Last . . . Seriously, Has It Been That Long?

“If what I say resonates with you, it is merely because we are both branches on the same tree.”
—William Butler Yeats

I started this blog with a two-fold objective: (1) keeping relatives and friends current on Martin’s progress, and (2) providing a resource to other families who are undertaking, or considering, biomedical ASD recovery.

As I’ve read comments left on the blog, sent to FindingMyKid@yahoo.com, and tweeted to @FindingMyKid, and as acquaintances have told me how they are using the blog, that second objective has expanded. I still want to serve families on the ASD recovery journey. But I’m realizing that most every parent is shepherding some journey. There are various disorders (ADHD, food allergies, &c.) apparently stemming, at least in part, from similar causes as autism. And beyond those disorders lie issue upon issue, from bullying to low self-esteem to eating disorders, layered into our kids.

We as parents are just trying to do the best we can, right? We’re covering every base when it comes to our children fulfilling their potential, while at the same time we’re building families and finding balance in our own lives.

It’s no easy task. I hope my little corner of the internet is giving voice to the enormity of parenthood.

You may not have a child with ASD, or a child on this particular recovery path. If what I say resonates with you, it’s because you know troubles of your own. It’s because we’re parents.