Hurray for the Detox

Three months ago, I wrote a post titled, “Take Heart. There Is Also More Than I Can Manage,” in which I described (1) believing that Martin needed a better detox protocol, and (2) feeling certain that we could not manage a protocol I found on the Recovering Kids/Regarding Caroline blog. I concluded by compiling an abbreviated—and still “aspirational”—plan for Martin:

  1. A foot bath during iPad time at least four days per week.
  2. Dry brushing Saturday (or Sunday), Wednesday, and Friday.
  3. Herx water before breakfast and after school.

I’m here to report that the abbreviated detox plan has been so successful for Martin that we now exceed the aspirations. He gets the foot bath four days per week. With limited exceptions, we are dry brushing every day, and Martin drinks herx water before breakfast, after school, and again before bed. Depending on how the day is going, I might even slip in a fourth herx water.

As to the dry brushing, the nightly routine arose through his own initiative. The first time we undertook the brushing, I expected him to get bored or frustrated. Instead, he stood patiently and asked to help me count the brush strokes: “one, two, three, four, five, six, one, two, three, four, five six.” I took a break the next two nights, not wanting to “overdo” the new routine. On the third day, Martin remarked, “Remember the brushing thing? We should do that again.” So we dry-brushed that evening, and Martin said, “We should do this every night.” Since then, he becomes agitated if I’m home and we miss a night.

As to the foot baths (which he tolerates) and the herx water (which he despises), the proof has been in the pudding. I wanted a new detox routine because of Martin’s constant silliness, which was impeding his social progress. When Martin is detox-y, he cannot control his laughing and his calling out, even when he knows the behavior is inappropriate. (This happens also when he’s yeasty, which I could tell was not the primary issue in January.) The silliness decreased almost as soon as we started daily dry brushing and, as of today I would estimate that the decrease is about 90%. Martin’s increased self-control has even led to a couple social breakthroughs. He’s made a few friends at school. The school behaviorist, whom I like to call Debbie Downer because she shares so much negative news, sent me these texts yesterday:

Hi. All good reports. Minimal silliness this week. More peers going to Martin and interacting with him.

Data are looking good, and consistent. Will be picking new targets but need to think about them, as he’s doing well. Pace of unpacking and packing [his backpack] up.

Remember when I told you that you know when a kid makes it when everybody else starts to copy them? Well they’re starting to copy some of the things that Martin does.

All good news! What are they copying?

Some of the silly behavior. Blurting out “Mister Poopy Pants” or something like that from Captain Underpants, or calling out “ice cream” just out of the blue.

They think it’s funny so they do it as well.

            Oh . . . fab . . . .

Yes. Teacher loves it, lol.

Of course, despite these advances, life is no bed of roses. It never is. Those his self-control has improved in almost every other area, Martin remains fixated on a girl from his taekwondo class, Abby. He can’s seem to stop bothering poor Abby, alternately calling her cute and ugly, pushing her, running into her. When I confront him, he cries and says, “I don’t know why I do it! I just can’t control myself around Abby!”

Also, Martin’s skin is a mess, even worse than before we started the detox protocol. I think clearing pores and stimulating the lymphatic system, which dry brushing is designed to do, makes something I wrote six years ago just as true today: “[Martin’s] digestive tract isn’t as good as it should be at spitting out bad stuff, so his skin overcompensates.” He picks at the scratches, sores, and tiny bumps covering his limbs. I avoid the spots carefully when dry brushing. The weather has remained chilly this spring, so I have him wear long sleeves to school, but that won’t last forever. The school nurse already phoned me once to say Martin couldn’t stop scratching his arms. I attributed the behavior to dry skin, because really, how am I supposed to explain to a traditional school nurse that antimicrobial killing of bartonella and babesia can produce a lot of toxins, which we are managing through an extensive daily protocol? It’s hard enough to explain the whole thing to you, dear readers, and I know you are educated sorts.

Difficult Come, Easy Go

Two years ago, I wrote my only post ever titled in all-caps: “MARTIN MADE FRIENDS.” I described how Martin finally managed to make friends in a scenario not arranged by adults: He rode his bicycle across the street to play with the twin girls who live there. I also admitted that the friend-making appeared limited to the specific situation—the same week, Martin bombed a play date and failed to speak to another neighbor girl. I predicted that making friends might be one of those skills that pops up, disappears, and then reemerges to stay.

The friendship with our twin neighbors faded, once other kids got involved. That fall, Martin transferred to the same school as those girls, and they joined the school-bus bullying fiasco. Martin tried sometimes to make friends at recess, but his classmates rejected him, and we were left with only playmates from his social-skills group and former special-education school.

Twenty-four (long) months later, fledgling friend-making is back. A month or two ago, as Martin and I were walking to the car at afternoon school pick-up, a boy ran up and said, “’Bye, Martin! See you tomorrow.” Martin replied, evenly, “’Bye, Manuel.”

“Martin,” I asked in the car, “who was that boy?”

“That’s my friend Manuel. He just moved here from Texas.”

“Is he in your class?”

“No, I met him at recess.” Martin said this matter-of-factly, as if he were constantly making new friends on the playground.

I asked Martin whether he’d like to invite Manuel for a play date. He replied that he would.

The next afternoon, I introduced myself to Manuel’s grandmother, who picks him up from school because his mother works. The grandmother said, “Oh, you’re Martin’s mom! Manuel talks about Martin. Let’s get them together.” We arranged a drop-off play date, at our house. The play date lasted two hours, which is a long time for Martin to hold it together and pay attention to another kid, but he managed, and the affair went pretty well (some bumps, resolved with agreement to watch a spooky video together). Thereafter, Martin reported playing with Manuel at recess several times. Once he said, sadly, that Manuel had decided to play soccer with some other boys instead. I suggested that Martin consider asking to play soccer too, but he said he was sure Manuel and other boys would say he couldn’t play. The next day, however, Martin announced that he indeed asked to play soccer, and that the boys had said yes, and that he had played soccer. I was overjoyed.

Most recently, Martin invited Manuel to “bring a friend” day at his taekwondo school. I consider this Martin’s first self-generated, sustained friendship. Manuel is a cheerful and polite boy, slightly clumsy and overweight, in a mainstream classroom and receiving limited (very limited, by our standards) special-education services. I don’t envision him and Martin ever becoming the coolest kids on the playground. That’s fine by me. Adrian and I were hardly cool kids, either.

Martin plays Minecraft on his iPad. Back in February, he asked me to buy him a particular Minecraft book he’d seen two classmates reading. I did so gladly, because Martin hates reading, and I’m happy for anything that gets him looking at words. Then Martin asked for a plush Minecraft zombie, and then for a plush Minecraft baby zombie. I hesitated, as Martin is nine years old and doesn’t need any more stuffed animals, but relented on the basis that the Minecraft theme might be a way to connect with other kids. I made the right choice: Martin’s teacher and behaviorist both said that a couple boys from class asked Martin to play with his zombies, and subsequently that the three of them were sitting together talking Minecraft at lunch and snack time. Martin himself said, excitedly, that he’d played “zombie chase” at recess with his “friends.” His request for the plush toys appears to have been calculated, for the purpose of attracting positive attention. Good work.

Martin also has reported that playing more with Lucas. Martin has known Lucas since fall 2016, when they shared a desk, and we’ve attempted play dates with him before, without too much success. Now Martin says the two of them have invented a game that involves hanging upside-down on the playground slide and yelling, “Help me!” (Um, okay . . . .)

In sum, over the last couple months, Martin has cultivated a playground repertoire. He plays with Manuel, he engages in Minecraft-related activities with classmates, or he hangs out on the climbing equipment with Lucas. When none of those options is available, Martin says, he sits and reads a Minecraft book. Last year he spent virtually every recess alone on the swings. The swings have been removed due to ongoing construction at Martin’s school. I was scared of what that removal could mean for recess, but he seems to be weathering the storm. He’s made a few friends.

And now—just a few months after moving here, Manuel’s family has decided to leave. The cost-of-living in our area is too high, Manuel’s mother says, and they aren’t able to make ends meet.

Martin is losing his first real, independently found friend. He’s crushed.

So are we. Adrian asked me, “Could we lend them money? Help pay for their apartment? Anything?” He wasn’t serious, of course. We can’t go around sponsoring families to make sure Martin has friends.

Even if we might do just about anything else.

The A-ha Moment: Part III

An old friend texted me, asking a favor. The two-year-old son of one of his law partners was just diagnosed with autism. Would I consider having lunch with the man, share with him our experiences?

No problem, I responded. The school/services/therapy side, or the biomed side?

Friend texted: “I told him about the dietary approach you took. Don’t know if they’re ready for that level of discipline but would be good for him to hear.”

“Dietary approach.” Love it.

I texted: “Over the years I’ve learned to approach the newbies gently, and tell them only what they’re ready to hear (plus maybe a little more).”

I have these types of meetings from time to time: friend-or-a-friend arrangements during which, depending on the direction the conversation takes, I tap, nudge, or shove the parents in the biomed direction. “Absolutely,” said Adrian, when I told him about the arranged lunch. It was one more opportunity to show our gratitude for Martin’s recovery thus far—that is, to imagine what our lives would be like today if we still had a son who postured because of gut pain, could not sleep unassisted, and neither acknowledged nor seemed to recognize his own parents.

Six years ago, I wrote about how my family got into biomed, in a series of three posts titled “The A-ha Moment.” Part I described our first realization that autism is medical and recovery may be possible. Part II told how a business contact of Adrian put us in touch with another contact whose wife, Annie, had recovered their son and was willing to talk to me. (A more precise description would be: “whose wife had recovered their son and was willing to spend a ton of time (seriously, an hour to start, and then hours more in follow-up) on the phone with me.”) Part III narrated—

Well, holy crap. In reviewing my blog in order to write this post, I’ve just realized that I never wrote “The A-ha Moment: Part III.” Me acabo dar cuenta de que soy una idiota. I thought I wrote it. I was sure I wrote it! Evidently, I never did. (In my defense, six years ago, I slept very little.) This situation must be remedied. I’ve rummaged through my home office and found the notes of the conversation back in January 2011 on which I intended to base Part III. Without further ado, I present The A-ha Moment: Part III:

The background. “You’ve got to talk to Betty [a pseudonym],” said my then-sister-in-law after Martin was diagnosed. “Her son has autism, and he’s doing amazing.”

I’d met Betty once, ten years earlier at my brother and sister-in-law’s house, when she and her husband brought over their two kids, a girl of about four and a toddler boy. I remembered the boy only vaguely. He’d run around and got into everything, like toddlers do.

I asked my sister-in-law to put me in touch with Betty. We scheduled a phone call, which took place the day after Annie had told me about recovering her son biomedically.

The conversation. I opened the Betty call by explaining that our son was undergoing formal diagnosis but that it was clear that he had autism, and that although we already had him in Early Intervention with ample therapy, we thought there was more we could do, medically.

“Oh, I’m probably not the best one to ask about that side of things,” Betty said. “We didn’t go in for the diet-and-supplementation stuff.”

No?

Betty explained that they had started biomed with their son—which, subsequently, I realized was kind of amazing, because this would have been years earlier, and everything was still pretty cutting-edge even when we started with Martin—but had given up quickly. “The diet was impossible. It just got in the way of all our family activities,” Betty said. Nevertheless, Betty assured me that, despite doing only traditional therapies, their son, now eleven years old, was fine.

Really? Tell me more. I was under the impression that a biomedical approach was necessary to really make progress.

Nope, Betty said. Her son was in a mainstream classroom.

That’s great! How does he relate to the other kids?

He’s able to do the assignments, except when the students pair up or work in groups. He’s not able to work cooperatively, so they let him do those activities alone.

Does he have friends?

Not really. He has one friend. They do a lot together. He doesn’t have any other friends. But he doesn’t care, so why should I? In social situations, he tends to isolate himself. When we’re going to be around other people, we let him bring a portable disc player and earphones to watch a movie.

He’s healthy? He sleeps and eats well?

Yes, he sleeps! No problem there. But his diet is terrible. He has food aversions. I have to send pretzels and potato chips for his school lunch every day, just to make sure he eats something. I feel like people think I’m a bad mother. He loves crunchy texture and salty flavor.

Sports?

No. No sports.

After-school activities?

Video games.

Readers, I’m sure you can imagine that by this point in the conversation I had decided that I did not like Betty’s version of “fine.” The picture she was so dire that I began to doubt my previous call with Annie, who told me about recovering her son. I thanked Betty for her time and insights. She concluded by reminding me that her son was fine and letting me know that my son would also be fine.

The follow-up. As soon as I hung up with Betty, I got back on the phone with Annie. Could she clarify? I asked. When she said her son was “recovered,” what did that mean? Was he quirky? A little bit off, in terms of social skills? Unwilling to eat regular foods, maybe? No, Annie answered. He’s recovered. He looks just like other kids. No one in his current school knows he ever had autism. He plays guitar in a kid-band with his friends. He likes sports.

I continued to press. There must be some difference? Annie seemed to think. Finally she said, “Sometimes when he’s playing basketball and it’s really noisy, he gets a little spacey and I feel like he could pay attention better.” That was it. That was what she came up with. The difference between her son and other children was that sometimes he got a little spacey on the basketball court.

The A-ha Moment, Part III: Behavioral therapy offers fine. Biomed offers recovered. We decided to aim for recovered.

Addendum. It’s not entirely correct to say I never wrote Part III. In a November 2011 post titled “Friendships,” I did reference what occurred in The A-ha Moment, Part III. I wrote: “Another parent once told me, about her eleven-year-old son on the spectrum, ‘He doesn’t have friends except for one. But if he doesn’t care, why should I?’” That came from Betty, about her son who was fine.

Back to 2017. Last week’s lunch with my old friend’s law partner, though peppered with discussion of special-needs preschools and CPSE meetings, steered decidedly in the biomed direction. The man asked science-y questions, which I did my best to answer, and listened to my many self-deprecating observations that began with, “I know this probably sounds a little crazy, and if ten years ago, I’d met today-me, I’d think I was crazy. But I’ve learned a lot about health, the immune system, and how seemingly psychiatric conditions can be tied to the gut . . . .”

Two afternoons later, at Martin’s social-skills playgroup, a mother new to the group overheard another mother and I talking, and asked, “What do you mean, ‘biomed’ and ‘neuroplasticity’? I’m not familiar with any of this.”

I paused, wondering whether I should proceed. Then I said, “This is probably going to sound crazy . . . .”

Action Plan

If last Thursday’s post worried you—and judging from the number of emails and texts I received, Friday’s post worried a lot of you—take heart. The events I described took place more than a month ago, and we’re still sallying forth.

That night, the night of Martin’s big disclosure, Martin cried some more in bed. Of the situation at school and on his bus, he said, “This has got to get better. Can you make this better?” We reassured him, repeated that he was brave and that we were proud of him for telling us what’s happening so that we can look for ways to help.

Once Martin fell asleep, Adrian and I convened for discussion. As upset as we were, we had to recognize that the dinnertime conversation was the most meaningful Martin had ever conducted. Adrian too had noticed the consistent eye contact and Martin’s determination to express himself, including how he’d pushed Adrian away instead of accepting a hug that might have ended the dialogue. Never before had Martin told us about social challenges, at least not directly.

Indeed, we saw progress. Martin wanted to play with other kids. Martin realized when he was rejected. Martin asked for help to remedy the situation.

But those positive aspects notwithstanding, we needed to take action. Immediately, I emailed the school principal and Martin’s teacher:

Principal C (also copying Teacher N to keep her in the loop)—

My husband and I need your help. We know Martin has a great team at school, especially Teacher N, and that you will be able to assist us in dealing with this situation.

We are having something of a crisis this evening with Martin. This afternoon he got off the bus looking very dejected. At the time, he would not tell me what was wrong. But he broke down during dinner tonight and said that all of the kids on front of the bus today (where he was sitting) pointed at him and said, “Stupid! Stupid! Martin is so stupid!” We asked him if this has happened before, and he told us that the kids on the bus have been calling him “weird” and “stupid” for some weeks now.

He went on to say that his classmates have been telling him that he is “unfriendly” or “weird,” and on some occasions have told him that no one likes him. He gave a lot of specific names of kids who say these things to him and, unfortunately, was not able to come up with one name of a kid who is currently being friendly to him. (We realize that Martin’s behaviorist has not been in the classroom that much this year, and that perhaps she is the one who should be catching these things.)

A lot came out this evening, and Martin cried the whole time. He said that no one will play with him on the playground, and will talk to him only to say they don’t want to play with him.

We told Martin that he is right to share these feelings with us, and that we will do everything we can to make it better. Before he went to bed, he asked, “Will there ever be a time when it is not like this?,” and then he asked us please to make it better as soon as we can.

Principal C, may I come and visit with you tomorrow (Wednesday) in order to talk this through and think about some strategies we can come up with to help the situation? I will stay home from work in order to do so. I have never seen Martin looking so down and so upset. He believes that he is completely friendless, and I think his self-esteem must be suffering.

As of tomorrow (Wednesday), he will be a walker, every day. I will deliver him to school and pick him up in the afternoons in order to prevent a repeat of what happened on the bus today.

We have been so happy Martin’s experience at school. I look forward to working with you to resolve this issue and help Martin move forward.

Thank you,

Martin’s Mom

Within ten minutes, the principal emailed back, inviting me to meet her the following morning, which I did, at 10:30 am. Remarkably, by the time I sat down in the principal’s office, the following events had occurred, which I relay second- or third-hand:

Martin, having been chauffeured to school by me, walked into his classroom and announced (to the teacher? to nearby students? to the wind? some details aren’t clear) that he was no longer going to be riding the school bus because the kids on the school bus are unkind to him. The teacher, aware of the situation from my email, asked, “Martin, is this something you want to discuss now?” Martin, apparently, said yes and proceeded to stand in front of the class and describe what the kids on the school bus had been saying about him, and that what they said wasn’t true, and that those kids just did not know him well enough.

Then, when Martin was done excoriating the bus riders, he continued speaking and addressed grievances with his classmates (none of whom ride the same bus). He repeated: “You say I’m unfriendly, but that’s not true. I’m trying to be friendly.” The teacher asked Martin how this made him feel. He said it made him feel bad, and sad, and not part of the class.

Once Martin’s diatribe was drawing to a close, the teacher asked Martin and his aide to go to the art room and retrieve some markers. “Class,” she asked those who remained, “did you have any idea Martin felt this way?” The kids shook their heads. One or two of the girls were crying.

An hour later, the principal passed Martin’s class as they walked to the music room. Martin signaled the principal and said, “I want to tell you what’s been happening,” and proceeded to speak once more about the bus.

I was happy to hear, from the principal, generalized agreement that we have a problem. She confirmed with my decision to take Martin off the school bus, saying we should focus our efforts on the classroom and the playground. As first steps, the principal committed (1) to see that the behaviorist visits Martin’s classroom more consistently (this has been an issue); (2) to check in with the teacher about any additional supports that might help; and (3) to increase playground supervision (from a distance, of course). Longer term, we agreed to convene a team meeting, which I would do through the school psychologist.

I left the principal’s office feeling troubled still but buoyed by her stated commitment to helping.

Coming next: How did that work out? Has school got better?

Polar Bear Under Siege

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.”

Knife

We knew when we put Martin in public school that socializing would be problem.

It has been.

Academics: Not a problem.

Speech/language: Fading as a problem, except for social/pragmatic usage.

Behavior: Sometimes a problem (the silly, detox-y days), but his teacher handles the behavior masterfully.

Socializing: Problem alert.

Last month, in the post titled, “I’m the Issue,” I wrote about my concerns for Martin’s self-esteem.

At night, when the reading is done and the teeth are brushed and Martin and his stuffed Minions are tucked under organic linens, I sit on his bed to tell him that he’s a great kid and very, very loved. If he’s having anxiety, I make him repeat: “I am safe. My mom is in the house. My dad is in the house. My mom and dad will keep me safe, and I will keep my Minions safe. I can sleep well tonight.” Sometimes we talk about the day he’s had, or the next day he will have.

“Is it okay,” he asked me two weeks ago, during this intimate time, “if people don’t like me?”

I said, “Of course it is. Everyone has some people who don’t like him or her. There are people who don’t like me. There are people who don’t like Daddy. You can’t make everyone like you.”

“But is it okay,” my beautiful eight-year-old son continued, “if no one likes me?”

I am a failure.

Why Can’t We Cross the Finish Line, the Nonexistent Finish Line, Together?

Bobby [a pseudonym] is eight years old and, according to Martin, his best friend. Bobby and Martin met in special-needs preschool four years ago, when Bobby was four years old and Martin was three. That’s also when I met Bobby’s mom, my friend Stacey [a pseudonym]. Bobby also has autism, and Stacey started biomed with him the following year, when Bobby was five.

When we all met, Bobby and Martin were superficially alike, with corresponding language limitations, emotional dysregulation, and lack of joint attention. They both had been classified “mild-to-moderate” on the autism spectrum. Beneath the surface, however, Martin and Bobby have entirely different health issues. Martin, simplified, has gut dysbiosis, mitochondrial processing issues, recurrent candida overgrowth, and suspected viruses hiding in biofilm. His immune system used to exist in overdrive, so that he was “never sick.” Bobby, simplified, has persistent mycoplasma pneumonia, environmental allergies, parasites, and PANS. His immune system is so depressed that he is “always sick.”

Stacey is given to panic. That is, she remains more susceptible than I am to the rollercoaster ride that is autism recovery. It is therefore possible that I did not completely, wholly, 100% believe her when, during the past few months, she’s said that Bobby isn’t doing as well as Martin, and that she’s not even sure they are still making progress in resolving his health issues.

Two weeks ago, Martin and I had a rare opportunity to hang out with just Stacey and Bobby. After a few hours together, and with regrets, I had to agree with Stacey that Bobby is not doing as well as Martin. At the restaurant, Bobby impulsively put his hands in others’ food and bolted from the table. When we walked in town, he disappeared into store after store and cried about having to go to school the next day. On the playground, he couldn’t swing by himself, aggressively hugged strangers, and melted down when it was time to leave. Martin, meanwhile, was perseverating a lot but otherwise looking pretty typical.

Know that I discussed all this with Stacey, and she gave me permission to write this post. I would not blindside a friend on-line, pseudonyms or no.

The afternoon’s low point, for me, came when Bobby was sitting on the sidewalk biting his own arm and I asked myself, “Is Bobby still the right best friend for Martin? Should Martin spend time with friends who challenge him more?” I would never want a mother to question whether Martin is the right friend for her child. I want Martin to be accepted by all kids, typically developing or otherwise. I was shortsighted and cruel to consider, even for a moment, directing Martin toward a higher-functioning friend. I recognized immediately that I was wrong and tried to turn the situation positive by asking Martin, “Your friend is having a difficult time. How can you help?” Still, there was no denying what I’d felt.

There are plenty reasons why, even though Stacey works just as hard as I do, Bobby’s recovery might be lagging behind Martin’s. I had the advantage of starting biomed when Martin was just two-and-a-half; by the time he met Bobby six months later, they were developmentally akin, even though Bobby is a full year older. Stacey didn’t get to start biomed until Bobby was five years old. The boys’ underlying issues are so different. Not all kids respond well to biomed, and Bobby may be one who doesn’t.

Three years ago, I wrote on this blog:

When I hear about other ASD kids making more progress, or faster progress, than Martin, it gives me hope. It also makes me angry and resentful. Why not our turn? Why not yet? What more do I have to do?

I ask myself, Is that still true? Do I still feel angry and resentful when other kids make more progress?

No. I don’t think so. Consider my friend Lakshmi and her son, Partha. I’ve written about Lakshmi before. Partha suffered a regression (lost all language) following a vaccination. We first met a few years ago when Lakshmi contacted me through this blog, and Partha was developmentally at about Martin’s level. Partha is recovered now, except for minor quirks; his mainstream classmates don’t know he had autism. That is much further along than Martin. When I see Partha and the progress he’s made, I feel happy for Lakshmi and inspired by what she’s accomplished. No resentment. No anger. Only the desire to continue sharing ideas over a cup of coffee. The same goes for my feelings about the other three recovered boys I know, as well as the kids I “know” through on-line chatter but have not met.

I’ve reached my current sanguinity, likely, because Martin has made clear, significant, and undeniable progress toward neurotypicality. In the same post as the “angry and resentful” admission, I mentioned that I became frustrated with Martin for spectrum behaviors like skipping, chewing on a straw in the corner of his mouth, and letting himself fall slack. In a later post, I wrote about Martin whining continuously oh mommy oh mommy oh mommy for 30 minutes, and screaming all the way from our apartment to JFK because Adrian suggested that he change jackets. We are nowhere near that place anymore. The spectrum behaviors that frustrate me today are more like talking too loud in church, laughing at the wrong time, and taking too long to finish breakfast. Almost every day, my confidence increases that we will achieve something like recovery.

I asked Stacey how she feels when she sees Martin or Bobby together, or when she sees Partha. (She knows Lakshmi and Partha too. We biomed moms all end up pals.) Stacey said that children who are recovering faster than Bobby make her depressed and anxious. She worries that she isn’t exploring the right treatments, and asks herself what more she can do (as I once asked myself, and sometimes still do). She fears that a mythical window will slide closed, separating Bobby forever from recovery.

And how does she feel when she sees a child who’s made no progress, who hasn’t taken any steps toward recovery, whose behaviors are more pronounced than Bobby’s, who lacks all language? She said, “I try not to assume the emotional burdens of others’ journeys. I want the best for them. I focus on Bobby.”

I admire Stacey for being hopeful for other kids while not letting their condition tint her outlook. I still tie myself to others’ children. Bobby’s performance at our play date has upset me terribly. I can’t feel as good about Martin’s recovery when I know not everyone is doing as well.

Kind of a funny shot of Martin, acting pretty typical while enjoying calamari in a restaurant.

Kind of a funny shot of Martin, acting pretty typical while enjoying calamari in a restaurant.

Once upon a time, it was more difficult for me to witness biomed kids passing Martin. Today, I think, it has become more difficult to see the ones who lag.