Legislative Commentary. Sorry, Not My Usual Thing, But This Deserves an Exception

As promised in yesterday’s post about medical marijuana, and with permission, I’m posting the testimony of my friend Victoria Grancarich. This testimoney will be given before Minnesota lawmakers this September. Victoria’s circumstances are very different from mine, as her son’s place on the spectrum is far from Martin’s. But this epidemic is all one spectrum. We stand in solidarity with each other, and root for what helps any child.

Victoria’s 14-year-old so, Julian, is profoundly affected by autism. Victoria and her husband, John, have truly scoured the ends of the Earth to help Julian and have made progress healing his mind and body. Nevertheless, several years Julian threw himself from a balcony, breaking his back and both his legs. With the onset of puberty, Julian’s self-injurious behavior escalated to the point that he needed constant restraints and protective gear to avoid beating himself into concussions. Victoria and John believe medical cannabis saved their son’s life. As a friend and observer, I agree. In my opinion, to deny marijuana to Julian would be abuse. Yet, this medication was available under Minnesota law only because Julian also suffers from seizures; if he suffered from self-injurious autism but not seizures, the marijuana option would be unavailable. Victoria offers her testimony in an effort to have the law changed and make medical cannabis available to all Minnesotans in need.

My name is Victoria Grancarich. I’m the mother of a 14-year-old boy named Julian. Julian has severe Autism and a seizure disorder. Julian began having seizures in June of 2011. We have tried many medications over the last six years; however, seizures and motor tics continued to be an issue.

Julian had always been a kind and affectionate boy in his younger years. When Julian turned 13, the onset of puberty brought new challenges. In February of 2016 Julian became extremely violent toward both family and school staff. He began raging daily and would physically attack us. It got to the point where we as his family needed to wear protective clothing to avoid being bitten, having our hair pulled, and being kicked and punched. His younger sister could not be in the same room, and she had to spend all of her time at home locked in her room for her own protection.

In August 2016, Julian began to turn the violence on to himself. He began punching himself in the head full force thousands of times per day. He would use his knee to injure his teeth. He would bang his head into walls. We were powerless to stop him. We were trying to protect him using helmets and arm immobilizers, and at times we had to physically restrain him for hours at a time to keep him from harming himself. We believed our son was in terrible pain and was suffering from debilitating headaches. We saw this once vibrant boy lose his will to live. He seemed determined to end his life and came close several times. Between October 2016 and January 2017, Julian was hospitalized three times. He suffered self-inflicted skull fractures and massive tissue damage. He had black eyes and giant hematomas on his skull regularly. The hospital staff offered psychiatric medications as well as gabapentin but nothing could stop the daily rages that lasted every moment that he was awake. I felt certain that if we could not get Julian cannabis that he would find a way to end his life.

Julian qualified for cannabis through the state program because of his seizure disorder. After being sent home from Children’s Hospital in Minneapolis after another life threatening episode of self-injury with no plan in place to heal our son, we felt cannabis was our only hope. The excruciating pain our son was in was getting worse and we knew no pharmaceutical medication could help him. We had tried everything the doctors offered and had absolutely no success.

We enrolled him in the Minnesota Cannabis program in January 2017. Within a week of beginning cannabis therapy Julian was able to go about an hour without harming himself. As the weeks went on and we reached a therapeutic dose Julian’s behaviors began to slowly melt away. By early March he was smiling again. Within six weeks of beginning cannabis Julian was no longer injuring himself or others. He began to take an interest in his life again. He returned to school full time. We were able to remove his helmets and protective gear. By mid-March we were getting smiles and hugs. Julian began to go outdoors again by mid-April. By May Julian began to show interest in using augmentative communication for the first time in his life.

It is now late June. We have not seen one episode of self-injury since early March. Julian has not struck me since February. Julian is enrolled in a day camp for children with special needs where he spends eight hours a day. He is exploring outside and making friends. He is happy and smiling. Julian and his sister have a relationship once again. Julian spends hours in our back yard enjoying bouncing on his trampoline, moving his body and taking in fresh air. He lives safely and happily in our home. He is free from pain. His seizures and motor tics are well managed to the point they are not interfering in his daily life.

Cannabis gave us our beautiful son back. Julian Grancarich is alive and well today because of this miracle medication.

I’m Ignoring Politics by Writing a Wistful Post Instead

Last weekend we went skiing at Jiminy Peak with Martin’s friend Bobby, his neurotypical brother Adam, and their parents. Martin and Bobby took their ski lessons with Stride Adaptive Sports, a terrific organization similar to the National Ability Center, our Utah mainstay.

Monday morning (no school, for Dr. Martin Luther King, Jr. Day), I retrieved Martin after his lesson and chatted with the instructor.

“Your son is an absolute pleasure to work with,” the instructor said. “He’s so talkative. He could be a New York City tour guide!”

That cuts both ways. Martin is obsessed with trains and landmarks, and the location of both. “Mommy, the Chrysler Building is north of the Empire State Building. The Empire State Building is on the same road as the entrance to the Queens-Midtown tunnel. The bottom of Central Park is where Midtown becomes Uptown.”

I said, “Thank you. We’ve worked really hard on his speech and language.”

“Saturday, I had two lessons with boys who were basically non-verbal.” The instructor shook his head. “I just couldn’t break through to them.”

It’s hard to convey the tone the instructor used when he said he “couldn’t break though to them.” He wasn’t speaking scornfully, or with pity, or even with sadness. It was more like he was disappointed in himself, and wished the situation had been otherwise.

I started to say, “I understand.”

But I stopped myself.

Because I can’t understand. Not any of this mess.

All That Could Be

A former work colleague, now a friend, messaged me the piece on a Rhodes Scholar with autism. This friend has a brother with autism and a son with severe anxiety troubles, and she knows that Martin has autism. (She may or may not know that, really, Martin had autism.) About the Rhodes Scholar, she wrote simply: “Love this.”

I responded:

I love it, too. But I also don’t love it.

A story like this is terrific because it reminds people that ability does not depend upon behavioral factors, and that awkwardness or perseveration are often just covers for awesomeness! Also, it’s a powerful message to go out and achieve, without excuses.

On the other hand, celebratory and feel-good stories tend to normalize autism in a way that I find unproductive. This is what feeds the “neurodiversity” movement, the idea that neurological variations just happen, and we need to stop trying to “correct” neurodivergent behavior. It’s like, If you can be autistic and a Rhodes Scholar, why would you not want to be autistic?

I don’t support neurodiversity or the feel-good approach to autism. What’s also going on in this story is that a mother had to sacrifice her own career (in toto) and personal success in order to give her son this opportunity. And that this young man, an Oxford-bound college graduate, cannot live independently and perhaps never will. And that he needs a service dog to assist with interactions, and that it’s unclear whether he’ll achieve the depth of interpersonal relationships that lead to marriage and the sustenance of enduring friendships.

I guess that seems like a pretty bleak view. My view of persons on the autism spectrum is blindingly bright. They achieve so much despite struggling with issues that the neurotypical cannot, truly (I include myself), fathom. My view of autism itself, however, is negative. “Autism” is the symptoms of underlying health and immune disorders that can, and should, be treated. In terms of the young man profiled in this story, I would suppose that autism may have given him the (perseverative/obsessive) focus to acquire vast amounts of facts/knowledge. But that amazing brain of his would have been present and functional even without the autism—and perhaps he could have become an independent Rhodes Scholar who will miss his family and girlfriend and football buddies during his years in England. And perhaps his mother could be practicing medicine and available to help others, free from the monopoly of her son’s needs.

I am 100% sure this is more than you wanted to hear this morning! It’s a topic I feel so strongly about that sometimes I can’t help myself. The way I look at it is this: Autism was never an essential part of my son, and it’s not an essential part of anyone on the spectrum. It’s an imposed condition that can be alleviated or eradicated through the right biomedical treatment (though not always, not by a long shot). My son is witty and charming. He’s going to go to Princeton or maybe Yale, and he could well end up a Rhodesie, if he doesn’t decide the Marshall Scholarship or a Fulbright is a better fit. I’d prefer if he does all that without the burden of autism.

Does that make sense? Honestly, it’s hard for me to write about these things because I worry about offending others who are touched by autism, which as time goes by is more and more of us. I’ve got a “love the sinner, hate the sin” relationship with autism, albeit in foggier terms. I admire the person—and could do well enough without the autism.

I sent the message off with trepidation, almost chagrin. I like this friend. She’s never been anything but kind, and I feared insulting her. It is so tricky, to discuss recovery with an autism family member who’s not pursuing biomed. I would never want to suggest that anyone else is providing inadequately, or has to be doing biomed, or anything similar. We all do what we can.

I hope she responds well.

Three Drugs, Maximum Dose

I play in a softball league for local women. We have four teams, comprising mostly moms in their 30s and 40s. It’s fun.

At one practice, a few of us were discussing Martin’s move from a private self-contained, special-education setting into our local school. (I’m so anxious. I raise the topic with anyone who knows anything.) I said that my son—no one on the team knows Martin—has ADHD and language delays.

Someone asked whether we’d considered the district’s own self-contained, special-education classroom for Martin. I said that we’d observed that classroom and liked the teacher but (1) we didn’t see any advantage to moving from one self-contained setting to another, and (2) our district representative wasn’t sure Martin would fit well with the students in the self-contained classroom. I worded the second point carefully, so as not to suggest that the class was behind schedule, or that Martin was “better” than its students, in case any mom present had a child in that classroom.

And indeed, one mom did have a child in the district’s self-contained classroom. She started talking about her son. She said that they’d considered trying to switch him to general education with an aide (that’s what we’re doing for Martin) but felt that the move from a 12-student-or-fewer classroom to a 20-student-or-more classroom would be too much for him to handle.

We have the same concern for Martin, I told her. I’m wondering how this year is going to go.

“I’m sure it will be fine,” she replied. “It wouldn’t work for my son. My son’s ADD is so bad.”

I’ve seen this woman’s son. He comes to watch our practices and games. To me, he looks absolutely typical.

I said, “Academically, attention is our main concern, too. Martin has so much trouble paying attention.”

“Not like my son,” she said. “Seriously, once my son even had an autism diagnosis. Now he’s on absolutely the highest dose of every medication he takes.” She named three pharmaceuticals, none of which I recognized. “For every one, he’s got the highest dose they allow. Based on his body weight, they won’t even let him take more. That’s how much he needs, just to pay attention.”

As she spoke, I grew uncomfortable. First, the way she said “autism diagnosis” conveyed, “You can’t even believe how bad his condition is.” I abhor “autism” being used as a synonym for “territory you don’t want to be anywhere near.” Last year I helped a special-education acquaintance request a neurodevelopmental psychiatric evaluation for her son. When I asked later how it went, she (despite knowing Martin’s then-diagnosis) replied that she hadn’t completed the exam because, after only the first session, the doctor said her son didn’t have autism. “That’s really what I needed to know,” that mother told me. “I mean, thank God, at least he doesn’t have autism.”

Second, as I’ve written before, I can’t say that we will never allow Martin to use a pharmaceutical to address his poor attention span. For example, if we get to middle school and a pharmaceutical can make the difference between fully mainstream and still being pulled from the classroom, maybe we will try the pharmaceutical. (Maybe.) That being said, the thought of an eight-year-old child, like softball mom’s son, taking a variety of drugs to alter his brain chemistry turns my stomach—especially because the family doesn’t seem to be making any attempt to address overall health. Every time I see the boy, he has goldfish crackers or an ice-cream cone or an artificially flavored popsicle or even a soda pop in his hands.

Third, softball mom’s comments were tinged with—I don’t know—pride, or bragging. She sounded like we were trying to outdo each other: My son has so little attention span that he needs three drugs, maximum dose. Can you top that? I suspect that, if we ever compared our children, I could top even three drugs, maximum dose. But who on earth would want to play such a game?

Sitting quietly and typing my blog, I can expound the three reasons her comments disquieted me, and come up with the kind of helpful response I could have given, something like, “I’d really like to hear more about your experience with the self-contained classroom. Can I give you my number so maybe we could grab coffee?” or maybe even, “We’re always looking for new friends. Do you think your son would like to do a play date sometime?”

On the softball field, however, I panicked, confounded as usual, nothing productive to offer. I said only, “Wow, it sounds like you’ve really got your hands full!” and hoped she would change the subject.

For ahen these situations arise, I’ve got to find some middle path that is neither my opening monologue to the biomed revolution nor a throw-away comment to move the conversation along. Regardung my veganism, I’m able to thread the needle; I respond honestly but non-graphically to any questions (no one wants to hear about factory farming at the dinner table) without pushing an agenda. What is the biomed equivalent? How do I gently suggest that a non-pharmaceutical option is available, without affronting or appearing judgmental?

Suggestions welcome.

Recognized, and Happy for It

My law school roommate lives an hour or two away. As the crow flies, her home is probably 40 miles or so from mine, but New York City lies between us, with all the convoluted traffic conjuring the metropolis requires. She and I meet occasionally for lunch, in Manhattan, but it’s rare that we bring our families together.

This Saturday she and her husband came over with their three kids, a girl about Martin’s age and two older boys. We barbecued and swam. The kids played. They stayed about five hours.

That evening, I received this email from my erstwhile roommate:

It has been a few years since I last saw Martin (or should I still call him Tin Tin?), so I didn’t know what to expect. I didn’t know if he would still be the little boy I remember from a few years back or if he would be completely different. Well, he is still the cute and sweet little boy I remember but he has also grown into a wonderful young man, so friendly, courteous, and fun! If I did not know from your blog posts that he has struggled with language and communication, I would not have guessed it. Martin was such a gracious host to my kids (who are not the most friendly outgoing type) and was actively engaging them. (He was asking Nathaniel if he preferred to be called “Nathaniel” or “Nate.” He was also calling to Mieko to come swim.) He was so expressive and easy-going and super nice to be around!

I know that today was just one day in his life and there must be other days when things are not so great. I can’t help but to think of all those sleepless nights, all the cooking and food shopping, traveling to doctors and therapists, and the worries and heartaches you endured. But I think you have soooo much to be proud of!!! Your unwavering faith in your child and your strength to guide him, even in the face of uncertainty, have made a world of difference.

Congratulations on achieving an important milestone! I am sure that the next chapter in his life will be an exciting and rewarding experience with new friends and new achievements.

The “important milestone” to which she refers is Martin’s upcoming switch from self-contained special education to general education.

I’m grateful and fortunate to report that I often receive compliments about Martin. This wasn’t even the first very cool email I’ve received from my law-school roommate.

The email quoted above, however, is different, and blog-worthy. In it, a parent of typically developing kids recognizes not only Martin’s growth but also the struggle it has taken to achieve that growth. This was so meaningful to me. Biomed parents know what happens behind the scenes. Biomed parents understand why I had to give up my former career, and they are sure I’ve cleaned poop smears, endured consecutive days without sleep, and snuck into bathrooms to cry. Parents of neurotypical kids, on the other hand, no matter how supportive, tend to overlook what autism recovery actually entails.

Before our guests left yesterday, my former roommate also said that I looked healthy. She said I seemed less exhausted and less burdened than I have since Martin was diagnosed.

When I asked later whether I could reproduce her email here, with the identifying information changed, she replied, “Sure, go ahead and use it on your blog. And you can remove any identifying information such as how beautiful and charming I am.”

Nice try. I will spite her by reporting to my entire (vast, vast) readership that my law-school roommate is beautiful and charming.

Which I suspect you already guessed.

IMG_3496

Martin enjoying homemade ice cream on our back deck, with the children of my law-school roommate.

Del Sur V: Manifesto

“Do you know?—maybe it’s possible that he never had autism?”

These words were spoken innocently, by a sympathetic party, and (I suspect) without forethought. It was late evening in South America. Martin was asleep. My mother-in-law and I sat in her kitchen, chatting, I with a glass of white wine, she with her pisco sour. We were discussing Martin and his progress; I mentioned that his official diagnosis had changed from ASD to ADHD with social/pragmatic language delay. My mother-in-law responded, “Do you know?—maybe it’s possible that he never had autism?”

My mother-in-law supports everything we do for Martin, and does her best to accommodate; we arrived from New York to find her fridge stocked with organic produce (still hard to procure in her area) and a cow knuckle and vegetables simmering on her stove, for Martin’s broth. That being said, I’m not sure she fully understands biomed, or our start point and desired endpoint. This is no criticism of my mother-in-law. I’m not convinced that anyone outside the thick of recovering a child understands autism or what healing requires. I’m not even convinced that I understand autism or what healing requires; I’m just a few paces farther down that road than others are.

Still, when my mother-in-law offhandedly suggested that maybe Martin never had autism, I bristled. I bristled because I think I will hear that suggestion a lot, as Martin continues to become more typical. Already I hear hints. A friend who has a mostly nonverbal seven-year-old and does not do biomed remarked recently about how “maturity” is resolving a lot of Martin’s issues. The friend meant no harm; in her mind, biomed doesn’t work, so she needs something else to explain Martin’s emergence from autism. (I didn’t pursue the issue further. I’m cautious, with other autism parents. We’re all doing what we think we can.) And remember the neurodevelopmental psychiatrist’s words? According to her, Martin developed functional language because he was “not destined to be a child with receptive or expressive language problems.” It’s not biomedical interventions. It’s destiny!

I know, from other blogs and on-line communities, that parents who manage to recover their kids from autism face skepticism that their children ever had autism. You may ask, why should they care? The opinion of naysayers doesn’t affect their children’s recovery. Why should I care if another autism parent wants to chalk Martin’s ongoing recovery up to “maturity,” or a doctor implicates destiny over hard work?

Well, I care, we care, everyone should care, because denying biomed has far greater implications than just adhering to ingrained misconceptions about autism.

It is possible to recover from autism. Not to learn to live with autism’s symptoms, which is what behavioral therapies teach, but to eradicate autism by treating the disorder’s underlying medical causes. I know this to be true, because my son is recovering from autism. I’m not deluded. I have the blood work and urinalysis evincing his medical issues. I have the series of neurodevelopmental psychiatric reports describing his detachment, his lack of language, his emotional instability. I witnessed too well his lethargy and physical discomfort. I endured his sleeplessness. I have watched, over five years, as his medical issues alleviated and the autism symptoms improved in tandem.

Every case of autism is different. Yet there are commonalities. The presence of autism points to an immune disorder rooted in the gut, where 70% of the immune system resides. A healthy gut biome has plenty of good bacteria to keep germs and infections at bay. When something depletes the good bacteria—say, antibiotics, or glyphosate—the bad guys start to party. Any further insult, like insufficient vaccine absorption or exposure to environmental toxins, can cause the whole immune system to jump its rails. When you’ve got no properly functioning immune system, you can find yourself with a host of secondary problems, like neuroinflammation, excess propionic acid, a struggling thyroid, glutathione depletion and methylation troubles, opportunistic infections, an inability to secrete heavy metals. And then? Neuron misfires. The endgame that manifests in autism.

Autism rates are on the rise. Stunningly. Think of those graphs that represent worldwide human population: Autism’s growth is similarly exponential, even according to conservative CDC figures. The epidemic is not the result of greater awareness, or expanded diagnoses; if it were, we would expect to see most cases clustered at the mild, almost debatable, end of the spectrum, where the merely “quirky” kids reside. Instead, new autism diagnoses litter the entire spectrum. Non-verbal, acutely affected autism is on the rise just like Asperger’s. Those who deny the rising autism rates are the willful ignoramuses and the irrational optimists. I am out of patience for either.

We don’t know, yet, what “causes” autism, though every day we learn more about factors that may contribute to the development of autism. I mentioned a few above: overuse of antibiotics, unsafe vaccinations, pesticides. Activists speculate about the role of pollution, about electromagnetic fields, about C-section births (or not) and the newborn’s chance to benefit from the vaginal biome. Genetics also play a role, such as the MTHFR mutation or UBE3A mutation.

(Note this: Accepting that genetics play a role in development of autism is not saying that we “can’t do anything about” the autism epidemic. The genetic predisposition to autism has probably been around many generations; only now do new environmental triggers spur the subsequent development of the disorder. Plus, more and more we have to speak not of genetics proper, but of epigenetics, mutations with the capacity to arise or dissipate between generations, or even within a single generation.)

Which brings me to many people’s resistance to accepting the notion of biomed. If we accept that we can reverse autism by resolving the factors that caused it in the first instance—then we admit that something is causing autism. Based on the exploding autism numbers, whatever is causing autism is getting worse. In an over-hygienic world devoted to unlimited consumption, exploitation of animals and the environment, a pill for every ailment, and the temple of convenience, we are doing something wrong. Disastrously wrong. In that regard, progress has stopped. Unless we change course, each successive generation will pay a higher bill for our abandonment of what is natural.

Unfortunately, almost no one seems to want to change course. So people deny that autism is on the rise, or that autism has causes, or that autism can be treated.

This is why I bristle to hear that maybe my son never had autism, or that he’s moving off the autism spectrum because of something other than biomed. It is also why I do not support the “neurodiversity” movement. Don’t get me wrong: I support the goal of inclusion and accommodation for persons living with autism. Did someone insult or exclude your family member with autism? Call me. I will gladly rush over and go Brooklyn on the jerk. But do not hand me acceptance of autism itself as a policy for dealing with skyrocketing autism rates. Do not tell me that autism is “just how some people are” and should not be addressed, because I will respond that schizophrenia and depression—other disorders with medical underpinnings—are also “just how some people are,” and give lie to how misguided neurodiversity is. People with autism should be accepted. Autism itself can, and should, be fought.

We can learn to live with just about anything. City dwellers learn to live with constant light and noise pollution. Our world may be on the verge of learning to live with catastrophic climate change. This ability to adapt does not mean that we should fail to recognize and correct our own mistakes.

My son had autism. My son still has ADHD. One day my son will be neurotypical. Treating his disorder biomedically has made this progress possible.

Full stop.

Del Sur III: Someone Has Got Him

My grandmother spent the last 45 years of her life in the United States, and yet some part of her never left Germany. Her kitchen represented Germany circa 1947, eternally enshrined in Southern Florida. She shunned modern appliances and scrubbed the bare counters spotless. An ode to beer, carved in the old German lettering, hung above the table where she sat to smoke, drink strong coffee, and work her crossword puzzles (in German, natch).

Allow me to add that my grandmother was also glamorous, and one of the worst cooks I’ve ever encountered. No dowdy Hausfrau here.

Adrian, my husband, moved to the United States in 1999 and nationalized in 2009, and he too keeps one foot in his country of origin. Throughout each day, WhatsApp messages zip among him and his schoolmates. I stock our pantry (and wine cabinet) with homeland products. He even likes to have his suits sewn by his hometown tailor and shoes made by his preferred cobbler. During my our recent visit to South America, my mother-in-law asked me to drive across the city with her to pick up Adrian’s new loafers and boots.

“I don’t know,” I replied. “Martin will be bored, spending that much time in the car.”

“Martin? He doesn’t have to come. He can go to the playground with his cousins.”

The cousins in town that week ranged from 10 to three years old. I asked, “Will someone go with them?”

“Of course,” my mother-in-law said. “Don’t worry about it. Someone’s got him.”

Soon three cousins appeared in the apartment with their mother (my sister-in-law Claudia), gathered Martin, and left. My mother-in-law and I headed to the cobbler, a trip that took more than 90 minutes with traffic. Then my mother-in-law wanted to stop at the supermarket, and we ended up shopping an hour as she showed me the newest organic and gluten-free options. Just as I began to worry about Martin, I received an email from Claudia titled, “There are five!”, with no more explanation than a photo of Martin, his three cousins, and another kid I didn’t recognize, whom evidently the crowd had picked up along the way. Okay. No rush. My mother-in-law and I sauntered home three hours after I’d watched Martin whisked out of the apartment. We found my brother-in-law (the beloved bachelor uncle, Pancho) waiting. Pancho reported that Claudia was summoning him to the park to help her haul five kids home. I went along and found Martin. All was well.

The next day, Pancho (remember the “beloved” reference) sent me to a spa for an aromatherapy massage. When I asked what Martin would do while I was gone, the answer was again, “Don’t worry about it. Someone’s got him.” A couple hours later, relaxed and aromatherapied, I walked to Claudia’s apartment. I found Martin coloring with a cousin and discovered that the “someone” watching the children was Anna, a young German musician. Claudia’s husband is the director of the capital city’s philharmonic orchestra, and musicians from around the world seem to move through their home. I’m never quite sure how these arrangements work. In any event, Martin was fine. Anna assured me there’d been no trouble, and that for a snack Martin had eaten the special bar my mother-in-law sent. Okay.

At home, my childcare is regimented, and paid. Tuesday afternoons, a special-education teacher helps Martin participate in church Kids’ Club, and I have a couple hours free. Wednesdays and Thursdays, when I work in the City, Samara meets Martin at his school bus, makes dinner, handles supplements and any after-school activities, and puts him to bed. All other times, unless by arrangement Adrian or a babysitter is on duty, Martin is my responsibility. Someone has not got him. I’ve got him.

The two instances described above were not the only two when, during our recent South American week, I did something other than supervise my son. I went out for Thai food with Pancho and Claudia; Martin slept, and my mother-in-law was around in case he woke. I shored up a fee agreement for work; Martin played video games at Chuck E. Cheese—yes, that monstrosity has expanded into South America—with my father-in-law and some cousins so distant I’m not sure I could correctly identify their parents. I lingered over brunch with the adults; Martin was somewhere, with someone.

For any parent, residing with no family in the area is challenging. For the parent of a child with autism, who almost by definition requires more attention than a typical child, and in some cases requires unremitting attention, independence from family is downright burdensome.

Then again, how many parents with ASD children cannot even take advantage of whatever support system they do possess? When Martin was a bolter, I could not have allowed a German musician to supervise him and three other children. When Martin lacked proprioceptive awareness, and had no perception of where the jungle gym ended, I could not have sent him to the playground without one-on-one surveillance. When Martin needed physical restraint to sleep, my 67-year-old mother-in-law being in the apartment would not have given me assurance that I could leave. Adrian and I, moreover, enjoy the advantage of both our families supporting our biomed approach; we do not need to worry about well-meaning relatives slipping Martin sugar-filled cupcakes or cotton candy so that he can “be like other kids.”

I have newfound respect for my grandmother’s lingering attachment to Mainz, her ancestral home, and for Adrian’s hybrid North/South American lifestyle. There exists a comfort zone within a known culture and extended family—something they both lost, and something even I lost when, at 17, I left forever the rural Upstate county where I was born. As the number of children with autism skyrockets, I can only imagine our collective Sehnsucht will expand in tandem.

Meanwhile, I’m trying to find a way to grow the “someone’s got him” model here at home, with the resources available. I’m typing this post on a commuter train, on my way home from work. I just texted Samara to check in. Samara replied that she’s making dinner and Martin is “over at his girlfriends’ house,” meaning the twin girls who live across the street. First I panicked: Is Martin being a bother to our neighbors? What if someone feeds him an off-diet snack? Should I ask Samara to stop making dinner and be with Martin? Then I reasoned: The girls have been inviting Martin to their house, and their mother told me how pleased she is that everyone is playing together. Their mother also knows that Martin can’t have gluten, dairy, or soy, and that we avoid refined sugar. Plus, Martin polices his own food these days. Martin is fine playing at our neighbors’ house.

This week we have friends from Germany staying with us, including a ten-year-old boy, Leo, and his aunt, Heike. Sunday evening, 6:00 pm, Leo was bored and asked Heike to take him and Martin to the playground. I hesitated; the playground is a 20-minute walk away, we hadn’t eaten dinner yet, and on school nights Martin usually goes to bed by 7:45 pm. But how often does Martin get a special evening trip to the playground? He dropped his iPad and ran for the door as soon as he heard Spielplatz—playground—the only German word he recognizes. I started to give directions. Martin proclaimed, “I know the way! I will lead them!”, and off they went, Heike on foot, Martin on scooter, Leo on Martin’s bicycle.

I poured myself a glass of wine, and handed a second glass to Adrian, and said dinner would be late.

“Why? Where’s Martin?”

“Don’t worry,” I said. “Heike’s got him.”

dekoschilder57