Dropping Him off, Into the Unknown

Posted on April 26, 2018 by findingmykid

Tough few days here, in the process of Finding My Kid.

In his life, Martin has had three “drop-off” play dates. The first was more than a year ago, when I left him with one of my friends who has a typically developing son Martin’s age. Though my friend generously spared me the details of the 90-minute play date, I could tell at pick-up that Martin had played alone (and fussily) and ignored her son, who ended up resenting Martin and teasing him at school. The second drop-off play date was a couple months ago, when I left Martin at his friend Jonathan’s house. Jonathan, who has some special needs, is the oldest of four boys (I mentioned them last year), and two of his younger brothers had friends over also. I’m not sure how many kids were in the house. Maybe eight or nine. A bunch of adults were there, too, watching the Winter Olympics. Martin disappeared immediately upstairs with Jonathan. I had no trouble leaving; Jonathan’s mom knows Martin well, and with her houseful of boys, I think she could handle just about anything short of a nuclear explosion. Whatever Martin did while there, he was happy when I returned, and Jonathan was happy, and all was well.

Last Friday was the third drop-off play date. Martin was invited to go after school to the home of Manuel, his school chum who, despite some challenges, is more or less typically developing. Manuel’s grandmother and mother both urged me to let Martin stay alone. I did so, albeit with reservations that they might not understand the extent of Martin’s challenges. I left and texted my friend Stacey:

I just let Martin go to a drop-off play date and now I’m too nervous to do anything.

I don’t want to get back and find out that he freaked or had a meltdown or something, ugh.

I’m seriously hovering a few blocks away in my car in case I get a text.

As it turned out, my reservations were well-founded. Although the grandmother (who supervised) was kind and generous with her words, Manuel began complaining as soon as I returned to retrieve Martin. Manuel said Martin hadn’t listened. Martin had hit him with the sword. Martin was running into the street. Martin didn’t want to play his games. And so on. And so forth. I could see for myself that Martin was hyperactive and agitated. I thanked Manuel and his grandmother for the play date and hustled Martin to the car. How did he think the play date went? I asked. So-so, he responded. Some good and some bad.

From Manuel’s perspective, I have to believe, the play date was more bad than good. We didn’t see Manuel again until Monday at school pick-up, when he rejected Martin’s overtures to play, for which his grandmother was apologetic. Tuesday, Martin appeared sad when I picked him up from school. (At that time, Manuel was trying to play handball with the rowdier boys, an activity in which Martin shows no interest.) Martin refused to disclose anything that might be making him sad. More than an hour later, when I was dropping him at church for Kids’ Klub, he said, “Why didn’t anyone want to play with me at recess?” I asked a few questions and learned that Manuel, Lucas, and the two classmates who usually talk Minecraft with him all said no when Martin asked them to play.

Manuel liked playing with Martin before Friday afternoon. Thereafter, not so much.

If I want to appease myself, I have plenty reasons why the Friday play date went poorly. For example:

> Manuel’s grandmother had invited Martin specifically to play video games. Martin was so much looking forward to the video games; Manuel has a gaming system that Martin thinks he might want for his birthday, and video games are one arena in which Martin feels comfortable with—equal to?—other kids. As it turns out, the family is half-packed to move, and some cable required for the video gaming system had gone missing. No video gaming occurred.

> Martin expected to play with just Manuel. When he arrived, Manuel suggested that they follow his usual practice of meeting two other friends as they got off the school bus. Martin knows the other two boys and agreed readily to include them, and in the end they stayed only 15 minutes. Still, their presence created another change in plans.

> Martin’s palate expander was falling out again. The darned thing was hanging, detached, on one side. Martin kept trying to reattach that side, and he could barely speak. The entire device finally detached during the play date.

> Manuel is moving next month. Martin is full of anxiety about this. Anxiety, in Martin, can manifest as anything from confusion to silliness to defiance.

In the end, my excuses don’t matter much. The Friday event went poorly because Martin couldn’t manage to play well with others. We still have work to do on social skills.

Or do my excuses matter? How much mischief did the anxiety cause? Last night I met with Martin’s psychologist. I mentioned the play date debacle, and why I thought Martin might have had more trouble than usual. The psychologist said, “That explains these pictures he’s been creating.” She showed my two sheets. On the first, Martin had drawn a car driving away, with Manuel inside and Martin outside yelling, “Manuel!!!!!!!” On the second sheet, Martin had drawn the outline of Florida (where Manuel is moving), a car packed and ready to depart, and Martin and Manuel saying goodbye to each other.

I wish something could be easy for my kid. Anything at all.

Polar Bear Under Siege

Posted on May 13, 2017 by findingmykid

Studies have found widely varying rates of other psychiatric problems among people with autism, depending on the population studied and the methods used. Those co-occurring conditions include: depression (affecting 2 to 30 percent), ADHD (affecting 29 to 83 percent), OCD (1.8 to 81 percent), and other anxiety disorders (2.9 to 35 percent).

Look at the foregoing paragraph. Again, please. Now keep those statistics, disparate and divergent as they are, in mind as you read this post and the two or three posts that will follow.

Martin is in a general-education classroom for the first time. The other pupils don’t like him. We know.

Remember when I forecasted that language would come last? I was wrong. Aside from a lingering habit of pronouncing “th” as “f,” Martin’s phonology is solid. Semantically and syntactically, Martin comprehends and expresses himself at or above an age-appropriate level. His language is caught up, except for social/pragmatic language. What actually come last, it turns out, are social skills.

Adrian and I have been worrying about how the gap in social performance is affecting Martin’s self-esteem. Last month, we decided to have Martin start seeing a psychologist, to help him deal with feelings of rejection. I made the relevant inquiries with parents in town, and we were able to find a local practitioner who has significant experience with social anxiety and ASD/ADHD. Adrian and I met her first. We charted Martin’s course from birth (and outrageous unnecessary NICU) to present. We said Martin acts upbeat but we know he’s masking other emotions. I told her about the night Martin asked me whether it’s okay if no one likes him. The conversation with the psychologist made us sad, both me and Adrian. I’m pretty sure, because later I asked Adrian, “Did that conversation make you sad?”, and he replied, “That conversation made me sad.”

Martin visited the psychologist for the first time on a Monday evening. I brought him, and worked in the waiting area while he and the therapist met. At the end of the session, the doctor invited me in and showed me what Martin had created: A castle scene in which a hapless polar bear was beset by a crowd including dragons, knights, and several kitty-cats. The doctor made several statement/questions like, “The horse is the leader, and the unicorn is following, and the polar bear wants to go back inside?” Martin agreed with her. I surmised that her comments were made, at least partly, for my benefit, but if I was supposed to be following along, the doctor had wildly overestimated my powers of intuition.

The whole shebang, to me, seemed like get-to-know-you play, but—something happened. The psychologist unleashed a force. What it was, I don’t know. (Relatedly, who the hell was the polar bear supposed to be?) The next day, Tuesday, this ensued:

I met Martin at the school bus stop at 2:45 pm. He exited the bus and walked directly to me, without engaging other kids. That was usual. He also looked depressed. Really, really in the dumps. He stared at his feet as he walked. I asked, “Are you okay? Did something happen?” He replied, “Oh no, I’m fine,” and followed up with, “I had an excellent day at school. Let’s go home.” On the brief trip from the bus stop to the house, I asked a few more times whether he was upset. Martin continued to deny that anything had happened. I took him to taekwondo and to church Kids’ Klub. No mention of anything.

Adrian arrived home in time for dinner, so we three ate together. Adrian finished first, and then left the table to take a business call.

Martin asked, “Do you and Daddy think I’m weird?”

I replied, “I guess everyone is ‘weird,’ in some ways. We all do things in our own way, and that can seem weird to other people. What makes you ask?”

“Do you and Daddy think I’m stupid?”

“Good heavens, no! What makes you ask that question?”

Martin started to cry. He said, “The kids on the bus think I’m stupid.”

And then—whether because the psychologist unlocked a vault within Martin, or otherwise—stuff got real. Through his tears, Martin described his current social situation:

The kids in his class call him weird and unfriendly.
No one will play with him at recess.
- Robert, whom Martin knows from church, was playing a game with friends. Martin asked Robert if he could join. Robert said no.
- Kids run away when they see him coming.
- A second-grader from another class seemed like he was going to accept Martin’s invitation to play, until one of Martin’s classmates ran over and said, “Don’t play with him! He’s the weird kid!”
Some weeks ago, when Martin got in trouble for telling a girl he was going to “kill” her (at the time, he provided no explanation why), it was because the girl had just said, “Martin, no one likes you.”
Even the young parishioners at church Kids’ Klub refuse to play with him.
As bad as all that is, the school bus is still worse. Every day the kids make fun of him, for months now. Even the kids he knows from bus stop participate in the bullying. The twins across the street participate. Kids from other classes and grades participate. The only kids who don’t tease him are kindergartner Marcus, third-grader Alice, and fifth-grader Stephanie. The only kid who ever will step in to stop the bullying is Stephanie.
This very afternoon, before Martin alit the bus looking so dejected, the kids had invented a chant: “Stu-pid! Stu-pid! Martin is so stu-pid!”

Never before had Martin said any of this directly. As realities were pouring out, Adrian realized from his office what was going on and returned to the kitchen. He found me squatting next to Martin’s chair, with my hand on his arm, withholding my own tears as I tried to reassure and let him continue. Martin held court for more than 15 minutes. Twice Adrian tried to hug Martin, but Martin resisted, pushing Adrian away gently because he wanted to keep talking. The conversation was extraordinary. Martin held eye contact, consistently. He spoke clearly. He answered my questions: No, his aide didn’t hear mean things kids said; no, the bus driver never intervened; no, Stephanie hadn’t been able to stop the stu-pid! chant because she wasn’t on the bus this afternoon. Martin also expressed a shocking degree of self-realization and profundity. “They say I’m unfriendly,” he said, “but it’s not true. It’s just that I’m still learning how to be friendly.” “I know those kids are wrong. They just don’t know me well enough.” “The twins were nice when I first met them, and then they turned mean on the bus.”

Finally, as I listened to what Martin has been enduring, I lost my own composure. At that moment Adrian scooped up Martin and carried him from the kitchen, telling him how brave he was to trust Mom and Dad with these stories and how proud we were. He took Martin to the bathroom and ran a warm bath. I remained in the kitchen, crying.

With Martin calmer and soaking in the tub, Adrian came back and hugged me.

I said, “We’ve got to do something.”

Fledgling Attempts

Posted on July 30, 2015 by findingmykid

Berkeley, California, last month. We have a couple hours free, so I bring Martin to Codornices Park to play. After a few trips down the 40-foot concrete slide, which he abandons when a rowdy group of unsupervised boys arrives, Martin wanders to the swings. I’m sitting on a nearby bench, kind of zoning out in the pleasant Pacific breeze. When I look up, Martin is talking to a boy on the swing next to him. I hear Martin say he’ll be seven in three days and ask the other boy’s age. The boy says he is already seven and asks Martin where he lives. Martin looks for me, waves, and yells, “Mommy, I’m making this boy my friend!”, and then tells the boy that he’s from New York. The boy asks what Martin is doing in California.

Martin replies, “We are going to visit my mommy’s client. She has one daughter and two sons.”

We are indeed going to visit one of my legal clients. The woman, however, has only one child, a daughter. Martin added the part about two sons because he thinks it is funny to lie.

The boy on the next swing starts to ask another question. Martin interrupts and says, “No, she doesn’t have any sons!”, and then starts laughing.

The other boys asks, “Why did you say she had two sons?”

Martin continues laughing, and doesn’t answer. The other boy gets off his swing and walks away, watching Martin over his shoulder as he goes.

Laguna Beach, California, last month. My brother Rudy is working, so Martin and I have time to kill. I take him to the main beach playground. Two other boys are there. I would guess them to be about six and eight years old—chronologically speaking, one on either side of Martin—and they appear to be brothers. They are supervised by an older woman, maybe their grandmother. I hear the brothers speaking English to each other; the grandmother calls to them in a Slavic-sounding language.

The younger brother begins to follow Martin, trying to engage him. At first, Martin pays him no mind and goes about climbing alone. The boy is persistent. He wants to play with Martin. He even ignores his older brother, who keeps tagging him and running away while yelling, “There’s no way you can catch me!”

Eventually Martin accepts the younger brother’s overtures, and they start playing together. At least, they’re engaging in the same activities: trying to climb over each other on the rope bridge, balancing on the logs. I don’t hear them speaking. The older brother continues trying to get the younger brother to chase him instead, to no avail. The younger brother is hooked on Martin.

Martin waves to me and yells, “Mommy, I’m making this boy my friend!”

I half-ignore the inappropriate declaration and whip out my iPhone to snap a picture, which I text to Adrian with the caption, “We are at a playground, and I think Martin has made a friend!!!”

The iPhone rings. It’s Adrian. “Tell me more,” he demands. I tell him that Martin is engaging in cooperative play with another boy. I promise more pictures as available.

When I get off the phone, I see that the older brother has given up trying to steal the younger brother from Martin, and all three boys are together in the playground’s covered structure. Better yet, I hear them talking. Names are exchanged. The older brother says something I don’t catch. Because Martin still lacks voice modulation, I hear his answer clearly: “My dad comes from South America!” That’s true. I hope it’s relevant. I hope Martin has asked what language the boys’ grandmother is speaking, and that one of the boys has told him that their mom or dad comes from somewhere, and that Martin has responded by saying where Adrian comes from. I hope.

The grandmother calls the brothers, and they leave without saying goodbye. If Martin is disappointed, he doesn’t show it. He returns to playing alone.

The last time we visited Laguna Beach’s main beach playground, two years ago, Martin ignored everyone and had a potty accident. Progress!

Laguna Beach again, two days later (the intervening day having been the Disney trip). I take Martin to a newer playground, at Aliso Beach. We’ve never been to this one before. It starts weird: Martin removes his shoes and runs onto the sizzling sand, which burns his feet. Instead of running off the sand, climbing on something, or dancing, Martin stays put and screams for me while his feet continue to roast. I get some Crocs on him, and the weirdness passes.

Two little girls show up together. Martin tries to engage them. He says hello and follows their lead, climbing where they climb. The girls acknowledge Martin but don’t return his interest. They continue playing together. Martin hovers nearby, plainly looking to be included.

More kids show up, until seven or eight total are playing. The bigger kids, the ones around Martin’s size, start running as a pack, chasing each other, kicking a ball, shouting instructions and comments. Martin gets left behind. He goes instead to a swing. Although he is capable of pumping his legs to propel himself, as high as he wants, he calls me to come push him.

When Martin is rejected, Mommy is his safe place.

Slide at Codornices Park. Martin is the top kid on the stairs, carrying cardboard in his left hand.

Poor photo quality, because I had to zoom in from afar. Main beach park, Laguna Beach. Martin is on the right. His new friend is behind him.

Year 2014 in Review

Posted on January 15, 2015 by findingmykid

A year ago, I woke up on New Year’s morning with the conviction that 2014 would be a banner year in Martin’s recovery.

It’s time for a look back at 2014.

Martin and a boy he played with on the beach, Florida Keys, New Year’s 2014.

We started several interventions to which, for a change, Martin plainly seemed to respond. (I write “for a change” because these were some of the few times when I was able to isolate particular interventions that helped. More often, it’s just something in “the whole package.”) When I posted in late July about five treatments that were “working now,” I also posted my frustration in jumping to conclusions based on initial positive results. I’m going to report now that at least two of those five “what’s working now” treatments, six months later, still are kicking autism’s butt: camel milk and Candex. Martin’s language took off immediately following the introduction of camel milk, and it hasn’t stopped since. Did you Tuesday’s post about the conversationalist? How cool was that? As for the Candex, Martin still has yeast flares. (I’ve come to accept that candida overgrowth may be a battle we fight for many years. Therein may lie our war.) Since we started using Candex, however, those flares have been milder and of shorter duration. They’ve been manageable.

Martin with his cousin Mandy in the snow, February 2014.

And the other three “working now” treatments, the GAPS diet, Enhansa™, and MitoSpectra? We are still on all three. I modified the GAPS diet by adding quinoa and reducing Martin’s meat consumption to one meal per day. (The reduction of meat isn’t particularly a “modification,” I suppose, though it felt that way.) I think Martin’s gut health is better than ever, though I wish he weren’t still prone to yeast flares. As to Enhansa, Martin’s chronic inflammation appears to have eased; I can’t say whether the Enhansa is responsible, or general improvement in gut health. I may stop the Enhansa, as an experiment, and see what happens. I plan to keep the MitoSpectra, for the time being. I reduced Martin’s dosage when a blood test revealed high levels of carnatine, and I feel like I could be doing more for his mitochondrial functioning (hence the quinoa). I’m keeping the MitoSpectra because I haven’t yet discovered that next best thing.

Martin at Planting Fields Arboretum State Historic Park, Oyster Bay, New York, Spring 2014.

In the second half of the year, after my “What’s Working Now” post, we started vision(-ish) therapy with Dr. Deborah Zelinsky; Heilkunst homeopathy with Rudi Verspoor; and a weekly facilitated social group with local kids. So far, I give all three a big thumbs up. We are in another period when “things are going well” but I’m not totally sure why. I may be observing a slight uptick in Martin’s eye contact and attention span. I’ll give that development to Dr. Zelinsky. Martin had a fever and apparent healing reaction over the Christmas break. That goes to the Heilkunst. As for the social group, that’s a confidence-builder. Martin is happy to have friends of his own. Last week, for the first time, he asked to bring a game that everyone could play—the lovely wildlife bingo set his uncle Eddie gave him.

Martin rock climbing at a birthday party, July 2014.

Did I make mistakes in 2014? Of course I did. I think the straight-up GAPS diet had too few carbs to meet Martin’s mitochondrial needs. I know there is debate on this point. For my child, I should have known; way back in 2011, when we first went grain-free, Martin showed signs of mild ketoacidosis, and we had to add a few gluten-free grains back in. This time around, I should have guessed that he would need more carbs than GAPS allows.

Martin with his uncle Rudy, Strasbourg, France, August 2014.

I rushed treatments. The mother who launched our biomedical journey cautioned me against the urge to do everything at once. Nevertheless, when I find an intervention that excites me, I might move too quickly. Even today, four years into Martin’s recovery, I’m prone to that amateur mistake. Other times, I just fail to pay attention and mistakenly start two treatments together. C’est la vie.

Martin looking over St. Bartholomá church, on the Königsee, Berchtesgadan, Germany, August 2014.

Despite my tendency to rush, though, I think honestly I can peg 2014 as the year when I internalized “marathon not sprint.” Sure, for years now I’ve parroted the mantra. Autism recovery is a marathon, not a sprint. Autism recovery is a marathon, not a sprint. But what kind of marathon did I really envision? In my “banner year” post, last January, I wrote, “I now understand ‘the long haul,’” and “I no longer fear that some mythical window will close while Martin is five . . ., or seven, or any age.” Even after I wrote that, however, the notions took some time to sink in. It wasn’t until November, when I wrote the “Journey” post, that I finally abandoned the idea that this process will have an end date. Striving for better health may well be a perennial task, one that Martin needs to continue even after he becomes responsible for his own care. Autism recovery is not a sprint. It isn’t even a marathon. Autism recovery is a lifestyle.

Martin hiking in the Adirondack mountains, near the Great Sacandaga Lake, August 2014.

Behavior-wise, in 2014 Martin took new interest in socializing with other kids. Although he still isolates himself when he becomes overwhelmed, for the most part he wants to be near his friends, even if just to play side-by-side on iPads. Late in the year, Martin also (finally) made progress on nighttime potty training. He wakes now when he needs the potty, and yells for me. “Thanks, kid.” Language-wise, in 2014—well, wow. Martin has been asking “why” questions (like, gazillions of why questions) for a long time now; in 2014, he started answering them, coherently. He’s become conversational, staying on point for multiple exchanges. He can talk on the phone. This afternoon he’s going to call Uncle Eddie and wish him happy birthday! And the perseveration has decreased. Did I mention that the perseveration has decreased? Yeah, the perseveration has decreased. Such a relief.

Martin, on the left, with his cousin Luke, in the Florida Keys, New Year’s 2015.

I am pleased to conclude that 2014 was a banner year in Martin’s recovery. All signs point to significant improvement in health, and corresponding changes in behavior.

May it be one banner year among many.

All of a Sudden, a Whole Bunch More Happens

Posted on October 29, 2014 by findingmykid

I have a lengthy post prepared on “my beef with the GAPS Diet author.” It’s all ready to go. But—

Shelving that post! At least for today. Because I must, must, must tell you about what else Martin did this weekend.

Saturday evening, back at O’Hare to fly home, we saw another family, with a boy about Martin’s age, boarding our flight. The boy was pulling a Cars-themed roller-board. Unprompted, Martin strolled up to the boy and asked, “Did you bring your own suitcase?”

Martin didn’t get to bed until almost midnight Saturday night, so I thought that getting up Sunday morning would be a real problem. It was not. When I entered his bedroom to wake him, I reminded him that it was Sunday and he was going to sing with the kids’ chorus at church. He came to life with excitement. “I’m going to sing with the kids’ chorus!” Then he did it. He sang with the kids’ chorus, three songs. He was too excited and bounced around a little. But he sang and clapped and stayed in more or less one spot, without so much as a point or prod from me. I sat in the front pew and recorded the event.

Also at church, during kids’ time, Martin sat on my lap in the circle with the other kids. When he got fidgety, I asked, “Would you like to go sit with Vincent?”, meaning another boy across the circle. Martin nodded yes (nodded!) and scooted to Vincent. Then, instead of just sidling up, Martin asked, “Vincent, may I sit next to you?” Vincent paused for a second—a very long second, for me—then he smiled and nodded. They sat together the rest of circle time.

Sunday afternoon, we went to visit friends in another town who have a three-year-old, Sebastian. After some initial shyness, and then goofiness, Martin trotted off to Sebastian’s room, and the two boys played together, interactively, for two hours. They sat at a little table and took turns with different objects, and took turns complaining when each thought the other wasn’t sharing. When I called from the kitchen, “Martin, what are you doing in there?”, he answered, “Me and Sebastian are making apple pie,” and then added, “Well, we’re pretending to make apple pie.” Sebastian is, granted, only three. Nevertheless, the interaction was so significant that Adrian said, “What is this? What’s going on? I’ve never seen this before.”

Sunday evening we accompanied the same friends to a jack-o’-lantern display. Martin and Sebastian wore their Halloween costumes (an astronaut and a dinosaur, respectively) and chose to hold hands as they walked.

This evening, Tuesday, I had dinner with the parents of another special-needs child. I told them excitedly about the events described above. One of these parents said, “That’s the thing about special needs. What might sound like nothing to another parent is amazing to us.”

Nailed it.

Empowered Moms

Posted on October 20, 2014 by findingmykid

These days I don’t feel so empowered, at least not on a macro-scale. I feel good about what I can do, what I am doing, for Martin. I am pleased to see other biomed moms banding together and trying to provoke change—see, e.g., The Thinking Moms Revolution or The Canary Party. I am grateful that other biomed moms create on-line forums and Facebook groups in which I can participate. As for me, my own engagement in collective action is on hold, not really in the realm of “what I think I can handle right now.” I need to recover Martin. Then I’ll change the world.

That all being said, recently I have joined together with two local special-needs moms (not biomed) to get something done. Actually get something done! Last summer, we were lamenting that our kids don’t have much way to make friends, and practice keeping them, here in our small town. When we make play dates for our kids, they engage in parallel play more than interactive play. There are professional resources available, like the play program that Martin attends (and adores) in the City. Unfortunately, those programs draw participants from a wide geographic swath, making after-school or casual get-togethers impracticable for the kids, and the cost excludes many families.

We three moms decided that what our town needs are facilitated social-skills playgroups for special-education students. And then we decided that, if the need is to be filled—we’re on deck. We formed a playgroup of six kids, grades kindergarten-through-second (ours kids plus three more, none in the same school class); hired a facilitator (a master’s student in elementary special education); found a time that works (late Friday afternoon); and got started, rotating each week among the participants’ homes. The facilitator comes prepared with games and exercises designed to foster social skills like sharing, taking turns, greeting, and getting to know each other.

By the fourth meeting Martin had fallen in love with his new playgroup. He calls his fellow participants “my friends from town.” All week he looks forward to Friday. He talks about whose home we’ll be visiting that week; one morning, he even created his own “Friday play date” schedule, listing out each child and checking off the retrospective house. He asks questions about what his “friends from town” do on the other afternoons. He wants to join them.

When the other moms reported similar enthusiasm from their kids, we knew we were onto something. We put together a formal proposal to bring the social-skills playgroup under the auspices of the local special-education parent-teacher association, which would both help defray the facilitator’s fees and also publicize to other parents who might be interested. Then we coordinated with a local Girl Scouts troop whose young women are interested in working with special-needs kids. As part of seeking their Silver Awards, several Scouts are going to come each week and assist our playgroup facilitator with keeping the kids focused.

Getting this project up and running, when so much else is on our shoulders, feels like a big achievement. We were correct that our town needs social-skills playgroups. As of this writing, enough parents have contacted us that we will be able to fill two additional six-member playgroups when we start our spring term next February.

Yay for moms, making stuff happen.

What Comes Last

Posted on May 25, 2014 by findingmykid

A couple years ago—hard to believe how long we’ve been at this—I lamented to Martin’s (then) biomed doctor that, while Martin’s behavior, sleep, and overall health had improved, I had not seen as much progress in his language. The doctor told me not to worry. “Language,” she said, “often comes last.”

I carried that mantra for a long time: Language comes last. When it took Martin so long to start asking questions, or to use the command form, or to pick up nuances and idioms, I thought, well, language is going to come last.

Or will it?

This year, Martin’s language is much improved. As I’ve written, his speech is not perfect. It often sounds scripted, or rote. Sometimes it seems like he’s exploring a foreign language: Unable to find the easiest or most direct way to express himself, he searches his capabilities and comes up with an unusual (original?) formulation. And his receptive language, his processing delays, still poses challenges; I might be explaining to Martin that we’re going out after lunch, only to have him melt down because he wants lunch, and the “going out” part has registered but not the “first, lunch” part. At his time, he still very much needs the intensive-language-based school program he attends.

That fact notwithstanding, Martin can speak. He speaks in sentences. He asks questions. He orders me around. When he’s not frustrated and mixing up his words, he can express himself, in a manner understood by most anyone who listens with care.

To that extent, language has come.

Language has come, and it did not come last.

Martin’s recovery has two additional, gigantic roadblocks that are not language, though language-related.

First, Martin still can’t “attend.” He doesn’t pay attention. He doesn’t listen. He talks when others are mid-sentence. Unless an activity is one he enjoys (music, eating, drawing), he shows little interest in what others are doing. And even when something does catch his attention, he doesn’t stay with it for long, except for example to stim by hitting one music key repeatedly, or to read his favorite book, The Philharmonic Gets Dressed, over and over.

Martin’s teachers have identified attending as his most significant challenge in the classroom; even with a 3:1 student-teacher ratio, he has trouble following. At home, the nanosecond attention span means it might take Martin 20 minutes to change clothes, because he gets distracted, or succumbs to boredom and starts complaining instead of dressing. It also keeps us from sharing experiences. If I say, “Oh, wow! Look at that bird!”, Martin might glance out the window, then jog away before I can comment on the bird’s color or size, or he might not look at all.

So language didn’t come last, because language has developed more than attention.

Second, Martin still has a lot of trouble socializing.

When we were in Austin around Easter, I arranged a playdate with “Stewie,” the six-year-old, typically developing son of a college friend. Martin and Stewie had never met, and Stewie was not informed in advance that Martin has challenges. We met at a crowded playground. The playdate went remarkably well. Although Martin was less interactive than an NT child would have been, he didn’t spend the playdate in his own world. Several times (some with prompting) he went to find and engage Stewie. He and Stewie stood together and gazed at an inchworm hanging on Stewie’s finger. When one family at the playground brought out a bubble pumper, Martin joined the other children, clapping his hands and chasing the bubbles. Stewie never even shot his mom that quizzical look that means, “Is there something different about this kid?”

The experience with Stewie gave me a sort of high. I texted Adrian: “Martin is having a playdate with a typically developing boy, and he’s doing FANTASTIC!”

But of course, in autism recovery, disappointments find a way to deflate any high, and four days after Martin played with Stewie, we had a much less successful playdate back in New York, with four classmates from Martin’s kindergarten. Martin attends a school for children with speech and language delays. About half the kids in his class also have autism or some other social impairment. By coincidence, none of the four boys other than Martin who attended this playdate had any social impairment. They are the social kids.

What happened was typical of what we experience when Martin attempts to play with more than one child at a time: Martin was left out. In a one-on-one situation, a playmate has few options other than to engage Martin. In a multi-kid situation, those without social impairments gravitate to each other, and away from the awkward boy.

Martin’s classmates, at the playground where we met, decided to fight dragons. They scampered about as a group, swinging imaginary axes, wielding nonexistent swords, screaming with excitement at the game they’d created.

Martin climbed on rocks and monkey bars. He went down the slide and wandered across the playground’s bridges. When I suggested that he join his classmates’ game, he approached the crowd and, using the social skills he’s been taught, ask shyly, “What are you doing?”

But the other boys were too boisterous and engaged to hear, and they ignored him.

Martin sat down, alone.

As he and I were walking to the car to return home, I asked, “How was the playdate? Did you have fun?”

My son responded, “No. I would like to do a playdate with only grown-ups.”

The next morning, Martin said he did not want to return to school. Thinking that he was experiencing end-of-spring-vacation blues, I tried cajoling him with his favorite subjects—“Do you think maybe you will have computer class today? What will you make in art class?”—and enumerating his classmates. “Do you think Christopher will be there? Are you looking forward to seeing Jack, and Quinn?”

When I finished my song-and-dance, Martin shook his head and said, “No. My friends at school don’t like me.”

Some defeats just crush your soul, don’t they?

So language didn’t come last, because language has developed more than socialization.

Which begs the question: What’s going to come last?

How will I know when we’ve reached our destination?

Martin, in the blue and white stripes, joins in bubble fun during his playdate with Stewie.