Quote of the Day: Carry On

[Drafted yesterday, a workday.]

Remember when I used to post occasional quotes? I barely remember. This morning, for the first time in a while, I need a quote to get through the day. Actually, two quotes: one from fun., and one from Hillary Clinton, the Democratic nominee for President.

I’m tired. Martin hasn’t been sleeping well. This week I took him overnight to Chicago, for an eye appointment. I’m so busy at work. And I’m kind of a politics junkie, so (yes, my own fault), I’ve been staying up too late watching the Republican and Democratic conventions.

This morning Martin woke at 4:22 am. That was five hours after I’d gone to sleep. I had also been up at 2:45 am, because Adrian had a stomachache. Martin did not return to sleep after 4:22 am. In addition, Martin was an out-of-control nightmare this morning. He actually did not seem to have control over himself. He was so hyperactive he couldn’t sit for breakfast. His volume control malfunctioned, and he screamed words he meant to speak. He had a meltdown when I made him stop watching Mickey Mouse Clubhouse long enough to go to the bathroom. He had a meltdown when I refused to let him stay home from school. (His asserted ground to skip school was that he got car sick in a shuttle bus yesterday. Which he did not. I was the one who got car sick. Furthermore, I did not get to stay home today. I am writing this post on my commuter train, office-bound.) When the school bus arrived, he shouted at me, “Now I’m never going to see you again! So long! It was nice knowing you!”


So where to go today?

You swore and said we are not

We are not shining stars

This I know

I never said we are

Though I’ve never been through hell like that

I’ve closed enough windows to know you can never look back

If you’re lost and alone

Or you’re sinking like a stone

Carry on

May your past be the sound of your feet upon the ground

Carry on

fun., “Carry On

This morning is done. We survived. My take-away is the sound of my feet upon the ground, because as Martin screamed and cried, I held my chin high and carried on.

But I’m here to tell you tonight—progress is possible. I know because I’ve seen it in the lives of people across America who get knocked down and get right back up.

                        —Hillary Clinton, DNC Nomination Acceptance Speech, 28 July 2016

The quote seems banal, as I’m writing it here. Still, it spoke to me. The conventions: They get me all “rah rah, America!” and thinking about how lucky I am, and how many struggle more than I do. The talk of getting knocked down and right back up, combined with “progress,” reminded me that even if we’ve come far, there is work left to be done, and I’d better pick myself up and do it. Rah rah, me!

And let me close with perspective: If this night and morning have been hard for me, what have they been for dear Martin? He is the one whose body is fighting Lyme disease. He must be wondering why he flew out of control this morning. He will be cranky all day. He will not feel well, and he will not know why, and yet he will carry on.

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.

The Never-Ending Story

Even now, even with all the progress we’ve made, even with Martin’s upcoming transfer to general education, even with me being able to work part-time outside the home, even when friends and family pin accolades on Martin and acclaim how far he’s come, even with the confidence that he will be able to love independently—

Even now, there are times when I fear my son’s illness still could get the better of me.

For more than a month, Martin has been sleeping poorly. Not as poorly as in the bad old days, when he needed physical restraint to fall asleep and rarely managed more than a few hours consecutively. But his silliness and hyperactivity (reactions to his Lyme protocol?) often steal two hours or more before he can settle, and his anxiety (protocol, combined with life changes like a new school?) disturbs his sleep. The day after such nights, he’s tired, which leads to more silliness and hyperactivity and anxiety, which lead to more sleepless bedtimes, and so goes the cycle.

It’s 5:04 a.m. I’ve been awake since 3:22 a.m., and so has Martin. Initially I hoped he would go to the bathroom and back to bed. Instead, he giggled and complained and snuck into my and Adrian’s room. At one point I found him curled up on the throw rug next to our bed; when confronted, he declared himself unable to rest anywhere else. Fifteen minutes ago, I gave him activated charcoal, to absorb whatever might be causing this vigil. Five minutes ago, I shut the master bedroom door (I’ve moved to the kitchen, to write) so that maybe Adrian can be the family member who gets to sleep till dawn.

Today, beginning in half an hour, I need to make breakfast and Martin’s lunch and handle morning supplements; drive Martin to a doctor appointment for his medical exemption for vaccines; drop him at school; edit a complaint and a legal memo; coordinate drafts of joint prosecution agreements; lead a call with several attorneys; schedule three separate home repairs; continue working through my checklist of activities to prepare Martin for his new school; repair Martin’s trombone before his music instructor arrives; conjure a grain-free organic dinner; help Martin with homework and exercises; repeat the increasingly futile bedtime routine; and use the after-bedtime slot to make Adrian’s lunch and Martin’s “goldfish” snacks.

Though I no longer handle sleeplessness well, I will do all this on less than five hours’ sleep, and then I will hope for a better night, because tomorrow I need to take Martin to Chicago for an optometrist appointment.

These are the times when I trip into a pile of doubt and fear, and when I wonder about just giving up. These are the times when I have to remind myself how much better I have life than other moms with ASD kids. These are the times when I dig deep for every morsel of scrappy resourcefulness I have.

It’s past dawn now, and Martin is in the family room, insisting that daylight means he can get up and watch television.

I’m going to go take care of the trombone. I’m from rural Upstate, so by my reckoning duct tape and ingenuity ought to do the trick.

I Am That Person. I Am That Mom

Social media. Ah, social media.

I made my first post about my uneasy relationship with social media five years ago, explaining why I blog anonymously. Two years ago, I posted again, bemoaning the lack of civility on-line, even among acquaintances.

I love Facebook, for the connections to old friends and my autism recovery groups. I also recognize the wisdom of keeping my mouth shut on controversial topics: Social media rarely allow for productive and thought-provoking exchange; users prefer to post dumbed-down memes and wait for comments that support their opinion.

What I need to get past, these days, is feeling personally attacked by others’ posts. Take, for example, this sketch that appeared recently on my Facebook wall:


The implication? That a mother whose child eats only organic, homemade food doesn’t “live[] in the real world.” But I live in the real world. And my child eats only organic, homemade food, except for a few commercial, raw snacks and occasional meals at pre-approved restaurants.

Or how about this post?:


Indeed! It’s me! I eat seedless (organic!) grapes and complain that GMOs are unnatural! I know the difference between selective breeding and genetic modification. Selective breeding is vertical genetic transmutation within a given species. Genetic modification is transmutation of genes horizontally, across species. Totally different.

I don’t respond. Why waste thoughtfulness?

I’m sure you can imagine how I felt when a friend posted a link to an article purportedly tying a measles outbreak to “anti-vaxx” parents and asked, “Who are these medieval people???”

Me again! Not only as the parent of an immune-compromised child, but also as an attorney, I have concerns about the current vaccination regime. We’ve exempted these potent pharmaceuticals from the usual liability schemaand the safety assessment protocol lends itself to manipulation as vaccine after vaccine after vaccine is pushed onto the recommended schedule. At the same time, legislatures are seeking to move these injections from “recommended” to mandatory, i.e., to restrict even exemptions that are based on valid health concerns. The whole pharma-driven plan invites rising vaccine injury rates, and I hope to witness more Constitutionally based challenges.


The list of Facebook zingers is long. I resist the urge to respond, “I’m glad you asked. I am that person.” I resist because I will end up only frustrated, and because fighting those virtual battles can sap energy from the real task at hand, Martin’s recovery.

But as usual, I am conflicted. Many of these types of Facebook “status updates” come from acquaintances who, I think, respect me and/or my professional competence. They come from law school classmates and from co-workers, from the siblings of childhood friends and from distant relatives. If I were to argue almost any valid opinion face-to-face, they would probably take note. I might even sway them.

If I am a person who may have influence over pro-vaccine, organic-bashing lovers of genetic modification, maybe I have a responsibility to speak. Or maybe—if I speak against pro-vaccine, organic-bashing lovers of genetic modification, I will lose whatever influence I have to command.

A conundrum.

A conundrum not limited to Facebook. An older relative, for no apparent reason other than knocking a chip from my shoulder, told me he was getting a Zostavax shot against shingles. I suggested that he might want to weigh the side effects, and that Zostavax is counter-indicated for people who’ve been treated for cancer (as he has). He blew off my concerns (which was likely his intent from the moment he brought up vaccination out of the blue). He said: “I believe in science.”

Science? What did you read before reaching this decision? I can show you the studies I’ve reviewed. I understand your concerns about shingles. On the other hand . . . wait. You haven’t done any research whatsoever? You saw a commercial that said a shot would protect you, so you’re going for it, no more information necessary? Good call.

Waste of breath.

When I started this blog years ago, Martin’s biomed doctor said, approvingly: “We have parents telling everyone they know that recovery is possible, and no one listens. You’re an Ivy-League-educated lawyer who can write, and a stickler for facts. Maybe they’ll listen to you.”

Maybe they won’t.

In my blog, I speak freely, When it comes to social medial, I’m better off trying to find points of agreement. Let’s go back to “Deborah,” who “loses her s**t daily & knows every honest mother does too”:

At least I can admit that I’m an “honest mother.”

Hubby Eats

Managing Martin’s recovery has taught me more than ever about nutrition.

I love my husband, Adrian, and would like to keep him healthy.

I’m kind of a control freak.

These facts were bound to collide at some point. That’s why, except when we go out for dinner or he has a business event, I now prepare every bite of food Adrian eats.

Years ago, Adrian skipped breakfast and, during the work week, bought whatever for lunch. When he decided to manage his diet better to lose a few pounds, he still skipped breakfast but I started sending lunch to the office with him. In the beginning, I sent a sandwich of cheese, fake meat (usually processed soy), greens, and mustard or vegan mayonnaise on whole-wheat bread; two fresh fruits; and two protein snacks like nuts, or veggies and hummus, or (more) cheese and crackers.

As time went on, the bread became sprouted-seed gluten-free, the fake meat became less processed and more lentil-mushroomy, and the cheese and hummus became organic.

Then the sandwiches and fake meat disappeared altogether. Then I insisted on adding breakfast at home. Then an insulated container of lentils snuck into every lunch, to make sure Adrian had enough to tide him over even when he works late (which he usually does). Then I tried to eliminate cheese snacks. That last effort, the cheese, was unsuccessful, although I did manage to switch him to raw-milk cheese, usually purchased directly from a local farm.

As of 2016, Adrian’s weekday menu is as follows:

Breakfast. Smoothie made from plant-based protein powder, nut milk, peanut butter, and frozen berries.

Lunch and snacks. Two bento-style boxes (I use LunchBots) containing avocado (South American by origin, Adrian craves avocado daily), fruits, nuts, cheese, olives, and/or raw veggies, accompanied by a hummus cup or baggie of rice crackers and a container of lentils or legumes.

Dinner: Whatever Martin is eating. Last night, dinner was white beans with home-grown-basil pesto and arugula salad from my garden. Tonight, Samara is preparing her special lentils with onion, garlic, and carrots; Adrian never minds lentils twice in one day. Tomorrow evening, Adrian and Martin will eat fish and fermented kale. In the event Adrian, a pescatarian, cannot eat what Martin is having (say, meatballs), I make him a “hearty salad,” which comprises fresh greens, berries, nuts, and seeds, dressed with olive oil and chickpea miso.

All the food is organic, except the nut milk, because sometimes I buy a brand that is only GMO-free, and the fish, which is wild-caught. Weekends, I make a full breakfast for Adrian and Martin, and we often eat dinner at a restaurant.

Adrian is a corporate attorney at a white-shoe law firm in Manhattan. Last month a visiting friend was ribbing Adrian, asking if he is the only firm partner who brings homemade lunch every day. Adrian laughed and said he didn’t care. “I like my lunch. My lunch is tasty.”

Now, if I could only get my own diet into such good shape.


Lunch and snacks for Adrian’s day: carrots, strawberries, TigerNut flour cookies, peaches, cheese, pistachios, avocado (coated with lemon juice), grapes, hummus.


Lentils, heated, being loaded into an insulated container to accompany Adrian’s lunch and snacks.


More bento boxes, with oranges, pears, avocado, cheese, cold bean salad, and olives.

And “Better” Means?

On our last trip to California, I was cuddling my friend Melanie’s three-month-old daughter (her first baby) when Melanie gestured toward Martin and asked, “What would you say has been your favorite age?”

Melanie knows Martin is recovering from autism, so I could answer: “It’s weird for me. My parenting journey hasn’t been traditional. Every day he can relate in ways he couldn’t before, and can communicate more, and can have more conversations, and play more games, so I would say each age he hits is my new favorite age.”

Later, reflecting, I questioned the implication of my response. If I enjoy parenting more—to be honest: if I enjoy our whole relationship more—as Martin inches toward recovery, does that mean that I value neurotypicality more than appreciating Martin wherever he is on the journey? Does my focus on his future take away from our today? If we had never discovered biomed, if Martin still lacked functional language and threw constant fits, would I resent parenting my own child?

Years ago, I described my own failure to “grieve.” Autism parents are often told to let go of the children they thought they had (i.e., the neurotypical children with standard futures) in order to embrace the child they do have (i.e., the children with autism and divergent futures). As soon as I realized that recovery is possible, I set aside the grieving process in favor of fighting. Throughout that fight, I’ve maintained that I’m not trying to change who my son is, only to dig his true nature out from under all that autism. I’ve also maintained that I love Martin fully and completely, with or without autism, whatever his future holds, however we have to parent him. All that is true.

But something else is also true, and I reckon it may be the most controversial declaration I’ve made on this blog. At least, judging from my impulse to go hide under a blanket and pretend no one will ever read this, it is my most controversial declaration. Here goes: I think it is better to have the chance to live without autism. Whatever unusual ways of seeing the world autism can bring, neurotypicality is generally preferable. We humans become fulfilled unto ourselves by relating to others, whether through physical affection, cyberspace communications, books, poems, common goals. Autism hindered Martin’s ability to relate to me, and mine to relate to him. That is why his life and mine, our common and intertwined life, is getting better as his autism fades.

To anyone living with autism and offended by this post, I apologize. This is my opinion, and based on my experience with my son. Any opinion is subject to change, and I freely admit that participating in a recovery journey may be usurping joy I would otherwise find day-to-day if I were to accept Martin’s autism as who he is, instead of what burdens him.

Maybe I’m saying I know why I’m Finding My Kid. I’m Finding My Kid to make life better.

I’ve built walls,

A fortress deep and mighty

That none may penetrate.

I have no need of friendship; friendship causes pain.

It’s laughter and it’s loving I disdain.

I am a rock,

I am an island.

—Paul Simon