This blog is about my 8 year old son Joey and our journey into diagnosing his PDD-NOS and Epilepsy, learning from it and helping others, as well as being a great place to store all the information I gather along the way.

Parenthood in early infancy is equal parts tedium and astonishment. The trick is telling the two apart.

This is harder than you might think.

Pointing, for example, is not an obviously astonishing act. I have already pointed several times today and no one was astonished. But when a baby points ecstatically at a puppy, or responds to someone else pointing at that puppy, we should marvel at him: We have just witnessed an astonishingly complex act. In fact, by pointing, that baby is, in a very real way, acting out what makes us uniquely human.

Over the last decade, a series of studies out of the Max Planck Institute for Evolutionary Anthropology in Leipzig, Germany, have made a very good argument for marveling at your pointing infant. A group of psychologists there have documented that infants, beginning at around 1 year of age, point and react to other people pointing in remarkably sophisticated ways. Babies point to refer to events in the past and the future. They point to refer to things that are no longer there. They can figure out, when an adult points across the room toward a group of objects, what exactly the adult is gesturing toward (the toy they’ve previously played with, say). They can deduce that, by pointing, an adult is trying to communicate something specific (find that toy hidden in that bucket). And not least of all, babies point because they want to share their experience of the world—that puppy—with someone else.

These may just be the talents out of which humans managed to assemble minor things like culture and language. “The basis of language is all right there in gestures,” says Malinda Carpenter, a developmental psychologist at Max Planck, who conducts research on larger issues of cultural cognition. When Carpenter sees an infant pointing out a clown to his mother, she sees a meeting of the minds: That baby is coming together with someone else to share his experience of—and his attitude toward—something else.

This is declarative pointing—showing something to someone else. (It’s very different from imperative pointing, which is pointing to request something. Imperative pointing is what Donald Trump does.) Of course, you could interpret this kind of pointing in a less sophisticated way than a meeting of the minds. Maybe the infant just wanted more attention. Maybe he just wanted the experimenter to see the toy, not to share in having seen it. Maybe he was just pointing for his own sake; maybe it had nothing to do with anyone else.

So Carpenter and her colleagues designed an experiment: They put infants in a highchair across from a screen with lots of closed windows; when a window opened, a puppet popped out. The infants did what any sensible person would do when face-to-face with a gyrating puppet: They pointed. To test different interpretations of what that pointing meant, the experimenter varied his reaction. The only reaction that the babies found satisfying—the only reaction that inspired them to keep pointing for each puppet—was when the experimenter looked back and forth between them and the puppet, saying things like, It’s Grover! That’s so interesting! The infants were delighted by this response. They wanted the adult to share the totally awesome experience of this totally awesome puppet. When the experimenter failed to do this, Carpenter says, “The kids stopped pointing for this weird adult, who wasn’t giving them what they wanted.” When the adult only looked at the infant, the infant often pointed again at the puppet, as if to say, No, you dunderhead—over there.

The infants didn’t just want attention to themselves. They wanted someone to share in their experience of the world. “It’s just so rewarding to have somebody else share your opinions about something,” Carpenter says. “Especially for a 12-month-old baby, but also for us. Imagine if you had a friend who never found the same things interesting that you did. It’s really rewarding for us, too.”

If you look closely enough at those outstretched fingers, you can see the roots of human cooperation. Our primate relatives don’t point declaratively. They point imperatively, like Donald Trump, and they will point to inform an experimenter where an object is—but only when there’s something in it for them, like food. But an ape wouldn’t point to a puppet, or anything else, for that matter, just because it was really cool. It’s a question of motivation, Carpenter says. “It’s just not important for them to share their opinions of things with others.”

Pointing to share an opinion builds on the foundation of what psychologists call joint attention—when two people pay attention to the same thing (and are aware that they’re both paying attention to that thing). Joint attention arises out of what Michael Tomasello, who heads the Developmental and Comparative Psychology Department at Max Planck, has called the nine-month revolution. Out of it grows the basis of pretty much all human achievement: the motivation and the ability to work together toward shared goals. (Apes never get there: They have the attention part but not the jointness.)

All this is enough for the appearance of pointing in infancy to be the most interesting mundane gesture ever. But as Carpenter and her colleagues have demonstrated, declarative pointing is not the only sort that babies do. “Infants from 12 months on, and even earlier in some cases, are pointing to express all kinds of complex meanings,” Carpenter says. For example, they will point just to inform you of something. “So if you’ve dropped something and don’t realize it, infants will point it out to you. There’s nothing in it for them. It’s just to help you.” In addition, babies will not just point to refer to an object that is no longer there—what psychologists call an absent referent—they take into account whether the adult has previously seen the object or not. In some cases, they seem to be trying to tell the adult what was there.

They can also deduce meanings based on who is pointing. When an adult and a baby are tossing toys in a basket together and the adult points to a toy and says, “There!” the baby will toss that toy in the basket too. He understands the pointing to refer not just to the toy but to the game they’re playing together. However, when another adult who isn’t playing the game points to an object out of the blue and says, “There!” the baby won’t toss it in the basket. (Who knows what that crazy adult means?) They also deduce meanings based on how purposeful the pointing appears: If an adult points to an object while looking distractedly at her wrist, the infant seems to assume that this pointing is happenstance, not an attempt to communicate with him.

Pointing, in other words, seems to call on a sophisticated understanding of what is going on in the heads of other people. “That suggests that they can do so much more with pointing prelinguistically than we ever thought before,” Carpenter says. Until recently, people thought that this sort of knowledge only emerged with language. Carpenter herself went to graduate school because she was interested in language. But then she started looking at prelinguistic gestures. “And everything’s already there! I completely lost interest in language because you can see so much complexity already in infants’ gestures.”

My youngest child is now 10 months old. We have exchanged deeply meaningful glances about fish pull-toys. He holds fabric vegetables up for shared approval.

We don’t know why pointing happens when it does. But in all likelihood, sometime soon—after months of my pointing toward interesting things and him drooling and staring dumbly at my finger—it will click. His head will turn.

And then, perhaps when he sees a totally awesome puppet, he will stretch out his own finger. This is a thrilling moment. Instead of listening to yet more of my opinions—and keep in mind that I’ve been monopolizing the conversation for a year now—he can offer his own. As Carpenter says, “The infant herself is able to say, ‘This is what I’m interested in.’ ” And she knows that you’ll be interested in what she has to say.

I make a joke because I am so scattered all the time. I even said, "Look there's a squirrel" in the middle of my vows. But truly a diagnosis is not a joke.

We had Joey's quarterly appointment with his developmental pediatrician at the Melmed Center today. In January, I went in armed with a good report card and a good IEP progress report, plus data from home, to prove to the doc that Joey did not need the Focalin 5 she prescribed in October, after data showed that a low dose of regular Focalin did nothing to improve Joey's attention.

In 2011, when he completed the TOVA assessment, he scored in the double digits on most of it, impulsively hitting buttons and showing low focus. His results were "suggestive of attention deficit disorder."

Tuesday (4/16). Joey scored in the single digits, with a total of -120 (I don't understand this result) and his results were "not suggestive of attention deficit disorder." She did note that although the test is boring, which it's supposed to be, he still paid attention to it. When he came back into the waiting room after the test, he said "It was so boring!" The proctor told me it wasn't supposed to be exciting so they could test how well the patients attend to non-interesting material.

The doc is no longer pushing meds which makes me happy. We will continue to monitor him closely. I know as a parent, I can do things better, like push no electronics after a certain point, and be adamant about an earlier bedtime. There is always something that could use improvement.

Attention is a tricky thing and is a very common issue with kids on the Autism Spectrum. Most get a dual diagnosis. But for Joe, I never felt that he was truly ADD, even if both his parents are.

The doc did say that she would like him to have a pediatric cardiologist do a complete work up on Joey to get a baseline for when he is older, based on his cruddy family heart history.

Other than that, Joey is healthy (53 lbs, same as last time / 4 ft. 1 ins., he grew 1.5 inches).

Tuesday, April 16, 2013

Goodbyes are said, all of Joey's things are back at the "heavy house" and his Dad is on his way. I was afraid there would be tears from Joey, but in typical Joe fashion, when Daddy said, "I'll see you in September," Joey said, "I can see my face in the doorbell."

It's sad and cute at the same time. I am glad that he is not upset and in tears; however, it shows how detached he can be. Maybe it's his coping mechanism. Only time will tell how well he does with his Dad leaving again.

Update 4/16/2013:

It's been exactly 2 weeks, and Joey has only mentioned his Dad a few times. His Dad, who is also very detached, went 12 days without so much as a text to see how Joey was doing? He texted me Sunday and then called a few times. Is it wrong that I want to put Daddy on extinction and ignore his attempts at contact for 12 days? Ben had a whole week before his fiance arrived, and still he couldn't find time to reach out to his son. Seriously, how long could a call take? Joey only ever talks for a few minutes. And how long does it take to text? Even the slowest texter can get it done pretty quick.

Tuesday, April 2, 2013

Today, I don't celebrate Autism; I celebrate my son, his accomplishments, and my belief that we can improve the lives of kids with Autism. We will celebrate all the children affected by Autism today in the way we always celebrate: doing the robot dance.

Autism has led me down a path and on a journey that I never could have imagined. It has shown me great sorrow and great joy, and strengthened my faith in love, determination, and honestly, science. I feel like I was able to pull my son back through to me somehow before I completely lost him. I never thought that I would ever hear the words "I love you, Mama" from him but now I do everyday. We stil...l have challenges ahead, but I wouldn't change one step of this journey because it led me to where we are today. Joey made me a Mom the day he was born and challenged me to be the best parent that I can be over the last 8 years. Everything he does amazes me because I never thought that he would have friends and play dates, be a part of a sports team, be mainstreamed with typical kids in school, laugh at my jokes and imitate my sarcasm, show concern for others, and even have a conversation with me. Some parents take those things for granted, and even think I'm weird because I marvel at everything he does. But if they could only understand that just a few years ago, I never thought any of these things were possible. And then I found an amazing place called SARRC and our journey began...

Preparing my sweet boy to say goodbye to his "Ben Daddy" tomorrow. In the last year, he has gotten to spend 11 weeks with him, and tomorrow he will say goodbye for another 5-6 months. Can you imagine not seeing your kid everyday? When his Dad comes back, he will have a wife which changes the dynamic for my son once again. I hope that as Joey continues to mature, he will understand that he can't take his Dad's choices personally. Some people are just not meant to be parents, but I'm thankful that he gave me my baby boy.I have a feeling this time it will be harder than the last. His bond is growing with his Dad. I hope his Dad doesn't do anything to destroy it.