Diagnosis

Posted on March 14, 2014 by findingmykid

Last year Adrian read Andrew Solomon’s Far From the Tree: Parents, Children, and the Search for Identity, a book about children who are profoundly “different” from their parents. Solomon profiles families affected by mental illness, Down syndrome, deafness, dwarfism, gender identity, autism, along with parents whose children were conceived in rape or grew up to commit mass murder.

Andrew Solomon also has an article titled “The Reckoning” in this week’s New Yorker, based on interviews he conducted with Peter Lanza, the estranged father of Adam Lanza.

Adam Lanza was the 20-year-old man who, on 14 December 2012, killed his mother, then 20 young children and six teachers at Sandy Hook Elementary School in Newtown, Connecticut, and then himself. I blogged here about the fact that Adam was diagnosed with Asperger’s Syndrome.

On NPR’s Fresh Air program this week, host Terry Gross interviewed Andrew Solomon about “The Reckoning.” Solomon made a point that also appears in the article, a point about diagnosis: According to Peter Lanza, receiving a diagnosis—Asperger’s Syndrome, now regarded as high-functioning autism—enabled him and his ex-wife, Nancy (Adam’s mother), to ignore signs of more troubling developments in their son. As Adam became isolated, and prone to obsessive-compulsive behaviors, and fascinated with violence, including violence against children, his parents attributed the oddities to Asperger’s. Adam has Asperger’s Syndrome, they thought. Asperger’s makes him behave strangely.

I didn’t think, in the weeks after 14 December 2012, and I don’t think now, that Adam Lanza’s parents were culpable in what happened at Sandy Hook. That’s a ridiculous notion. They talked. They tried. They sought the advice of specialists. Nancy Lanza appeared to believe, genuinely, that coddling Adam and his increasingly disturbing whims was the best means of supporting her son. The burden we place on parents today is too great even without attributing to them their children’s reprehensible violence.

Without in any way blaming Peter or Nancy Lanza, I appreciate Peter Lanza’s recognition (and Andrew Solomon’s explanation) that a diagnosis is broad and easy to hide behind.

To that substantive point, I will add one more: A diagnosis of autism, while it may be comforting, is largely meaningless.

Martin does not “have autism.” Martin has a variety of conditions, linked by autoimmune disorder, that result in symptoms labeled as autism.

It is minimally probative when doctors label symptoms as disease. Suppose that a man goes to the doctor and is diagnosed with “wheezing.” Suppose that the doctor tells this man that many helpful therapies exist to alleviate wheezing, including throat lozenges, tea with honey, breathing exercises, and even CPAP masks. Suppose the doctor suggests that the man eliminate smoking from his routine, because smoking is known to exacerbate wheezing. Suppose the doctor goes so far as to prescribe a drug that relaxes the airwaves, so that the man can walk about with his wheezing less evident.

Would you think the doctor had been thorough? That he had done his job?

Or would you fault the doctor for addressing the symptoms but failing to diagnose lung cancer, the disease that caused the wheezing?

When Martin was diagnosed with PDD-NOS, and then with autism, I cried. A lot. Even Adrian cried. Autism is treated like a death sentence. Parents are coached to grieve for the child who once was but will not be again.

I wonder now what the days surrounding Martin’s diagnosis would have been like if the team of “experts” we paid had said something like this:

Your son has a complicated autoimmune disorder. His gut, where most of the immune system subsists, doesn’t have the right balance of beneficial flora, and therefore he can’t digest nutrients properly or respond to intruders like parasites, harmful germs, unchecked proprionic acid. On a related note, your son has a mitochondrial processing disorder, which is causing low muscle tone and lethargy. Several genetic abnormalities are contributing to the injuries. The totality of these disorders is resulting in systemic inflammation as a subpar immune response, and that inflammation, which persists even in the brain, is causing “misfires” within the neural synapses. These misfires result in the symptoms you’re witnessing: repetitive behaviors, lack of eye contact, social awkwardness, inattention, drifting, and speech skills that lag behind your son’s cognitive ability.

I imagine that, if three years ago we had been told all that, we would have cried less and got to work sooner. We would have asked questions like how to re-balance the gut flora, how to resolve the mitochondrial processing failures, and whether the genetic abnormalities can be addressed.

(We might also have asked how this autoimmune disorder arose, and whether it had anything to do with the hospital threatening us, placing our healthy son in the NICU, and pumping him full of antibiotics, after the unplanned C-section robbed him of the protective effects of his mother’s vaginal microbes. That’s a topic for another post.)

I won’t deny that I take comfort in the existence of an “autism community.” (Solomon makes the point that Adam Lanza rejected his Asperger’s diagnosis, and refused to consider himself part of the Asperger’s community.) I do, however, argue that the autism diagnosis is an impediment to recovery. “Autism” sounds impossibly untreatable. The health conditions underlying autism? Not so untreatable. Those we can roll up our sleeves and tackle.

Andrew Solomon, who is public about his own battle with depression, lamented in the Fresh Air interview that Adam Lanza’s depression might have been treatable, had it been recognized as depression instead of hidden within Asperger’s. I ask: Would the depression have been hidden if Adam’s parents had realized that Asperger’s Syndrome is a symptom of an underlying condition? Or might they have suspected that the depression arose, in whatever measure, from the same underlying condition? Might they have had the tools to roll up their sleeves with more success?

Adrian reports that he found Far From the Tree (emotionally) difficult. He put it down for a while after reading that courts tend to issue mild sentences for parents who kill their special-needs children. Some forms of filicide, it appears, are considered forgivable. Would the filicide be so forgivable if those parents had children with diabetes or leukemia or renal failure or any other condition that, with medical and dietary and lifestyle attention, might be kept at bay?

Autism is the symptoms of a treatable medical problem. Diagnosis matters.

Let’s Talk Honestly About Really Crappy Days

Posted on March 5, 2014 by findingmykid

Most email traffic that passes through FindingMyKid@yahoo.com congratulates the progress we’ve made with Martin. Some correspondents compliment me (thanks!) for presenting the difficult aspects of recovery, too, instead of pretending every moment is roses and wine. A few parents bemoan their own children’s lack of progress.

I want to speak to the parents who feel like they aren’t making progress. To be honest, despite the progress we’ve made, wine and roses are far, far, far from our everyday reality. That’s not to say that recovery isn’t the series of joyous breakthroughs I present in this blog. It is rather to admit that these developments punctuate long stretches of “no change” or even apparent regression, which I prefer to call “the reappearance of former symptoms.”

My last couple posts referred to the bad week Martin’s been having. Let’s add some more depth and talk about yesterday morning—

I knew the morning would be tough, because Martin took almost two hours to fall asleep the night before and was bound to be tired. At 5:55 a.m., as usual, I carried Martin from his room to our bed, to wake up with Adrian.

Around 6:35 a.m., as I was putting the final touches on breakfast, I heard yelling, whining, and a scream or two, all from Martin. I found Adrian trying to get Martin dressed. Martin was in a fetal position, refusing to cooperate. He said, “No! I want to stay here today! I don’t want to go to school.” Then, frustrated, he switched to the nonsensical: “I don’t want you! I’m going to sleep at school! I don’t want to come home!”

Adrian waved off my offer to assist. I returned to the kitchen. Ten minutes later, the crying and complaining uninterrupted, Adrian and Martin appeared in the kitchen. Martin was dressed, save for the “crazy socks” he was supposed to wear for Dr. Seuss appreciation week at school. His whine had become, “I don’t want to wear crazy socks. No! No! No! I don’t want breakfast.”

We got him seated at the table. Although he has a chair with footrest that facilitates using his legs and core to sit up straight, Martin slouched. When he saw his breakfast (turkey bacon and vegetables, pretty standard), he lowered his voice to the continuous, slurred word-melding that I detest. “No food oh Mommy oh Mommy oh Mommy Mommy Mommy no no no.” He thrust his fists into his stomach and curved his back, a posture that (I think) indicates stomach pain. When I tried to offer him turkey bacon, he batted my hand and screamed, “Noooooo!” He grabbed his glass of “kombucha with seeds,” pursed his lips on the stainless-steel straw, and changed his whine to, “Drink, only drink no anything else oh Mommy.”

Adrian passed back through the kitchen, kissed us both, wished me good luck, and left for work.

I switched on the kitchen television. Sesame Street. Martin’s a bit beyond that now. Still, I thought the distraction might help. Over the next half hour I managed to get his supplements and most of the bacon (none of the vegetables) into his mouth. In the meantime, he left his chair to bounce up and down, slapped at me, used his fingernail to scratch marks in the wooden tabletop, whined incessantly, dumped fish oil on his school sweater, told me to turn off Sesame Street, cried when I turned off Sesame Street, spilled his drink while refusing to take his mouth off the straw, curled himself into a ball around his Curious George sock puppet and wouldn’t release, threw vitamins on the floor, and ultimately dissolved into a tantrum because he had no time to play before the school bus came.

By sheer force of love, willpower, and coffee, I kept my patience and got him on the bus. (“Martin’s not feeling his best this morning,” I told the matron when I handed him over.) Then I returned to the kitchen to sulk.

That’s right, I sulked. Because when you are working hard to recover your child, a bad morning (bad day, bad week, bad month, bad season) leaves you wallowing in a stew of doubts.

• What am I doing to my child? Is this worth it? What caused this meltdown? I think the culprit yesterday morning was probably the nystatin we started last week. I think. But really, who the heck knows? And why would it matter? If something—anything—I’ve done has caused Martin to feel like he did yesterday, am I really acting in his best interest?

• Why have I given up so much to follow to pursue autism recovery? I used to have a career, disposable income, and free time. Now my job is “autism recovery specialist,” our money goes to therapies and supplements, and getting out for an evening requires hours of preparation. Even worse, I’ve met families who claim their children have improved markedly with nothing but traditional therapies like ABA and speech therapy. Why go on?

• By working toward recovery, by rejecting the idea that Martin is bound to autism for life, am I making each day harder, for all of us? Long ago I wrote a post titled “Failure to Grieve.” To this day, I wonder whether Adrian and I would breathe easier if we just decided, Martin has autism. Let’s help him live with it as best he can.

• Other than families in the recovery community, almost everyone I know is a subtle naysayer. I never realized exactly how many ways there are to express skepticism: “Is Martin’s doctor a real M.D.?” “Do you have a regular pediatrician supervising all this, too?” “Is that actually a scientifically accepted principle?” “You’re not going to start saying kids shouldn’t get vaccinated, are you?” “Where did you hear about that?” “Have you tried taking all those supplements yourself?” “Poor Martin! What a shame that he can’t eat like other kids.” And those are comments from people who say they support what we are undertaking. When Martin is doing nothing but spitting venom and whining nonsensically, I think, You know, I really do like fitting in with other people. I think I’ll get off the whacky autism recovery path and go back to the mainstream.

So I sulked. I finished my coffee, and I climbed back in bed for an hour.

Then I rose again, made myself a protein shake, and went to CrossFit. Nothing clears my head quite like loud music and exercising to exhaustion. The truth is that mornings like yesterday are so remarkable only because Martin is getting better. With perspective, I remember the early days when we never knew what Martin was going to do next, and he lacked the language to convey his needs. He used to bolt if I wasn’t holding his hand. He used to cry inconsolably if he wanted to take the 2 subway but the 3 came instead. With perspective, I also reckon that, no matter what the ABA-enthusiasts say, no magic autism faerie is ever going to wave her wand and make Martin better without medical intervention. Recovering Martin’s health and opening him up to full participation in our world of opportunity—that’s up to me. It’s going to happen through my perseverance, or it’s not going to happen at all.

Back to wine and roses: To be even more honest, and less metaphorical, the recovery process has increased my dinnertime wine consumption, Adrian is a thoughtful husband who sends me flowers, and indeed most weeks I buy roses or tulips for our kitchen table vase. The path to recovery is hard. Wine and roses may not be everything, but they sure do help get past the stumbles.

For better or for worse, he’s my guy.

Opinion Piece: Crowdsourcing Your Child’s Medical Care Is Not a Good Plan

Posted on February 25, 2014 by findingmykid

Before you read the “opinion” section of this post, please peruse these five statements:

1. The internet can be an excellent source of information, advice, and comfort. Most days, I spend several hours collecting ideas and cyber-talking with other parents across the web.

2. I am very, very fortunate that I have money available (including insurance reimbursement) to pay MD’s, ND’s, homeopathic practitioners, and therapists. I recognize, honor, and pray for families who want to treat their children biomedically and/or homeopathically but lack sufficient funding to do so; when we have recovered Martin, I will find some way to provide material assistance to those families.

3. I am not in the business of judging other parents’ choices. I do have an opinion about how to treat ASD in children, and I act upon that opinion by, in consultation and agreement with my husband, treating our son as I see fit. I expect other parents to do the same. Unless you are neglecting your child, or actively attempting to harm him, I respect your choices.

4. Recovery from ASD, asthma, allergies, ADD, and ADHD (et cetera!) remains an emerging science. Laboratory studies have not kept up with what’s going on in the field. Because of that, the trial-and-error and “experimentation” factors may be even more significant in these areas than elsewhere in medicine.

5. I am not aiming to inject acrimony or discord into the on-line ASD recovery community. This post, like every post on FindingMyKid, is selfish. I’m discussing my son’s progress and expositing my thoughts, in hopes of (1) documenting the recovery process, and (2) fomenting ideas in readers. I think that’s what blogging is about, documenting and fomenting. I hope I don’t lose readers over this post.

End of disclaimers. Beginning of opinion section—

I belong to several Facebook groups dedicating to recovering children. Many parents (or grandparents and other caregivers) write posts among these lines:

• “My son has this itchy rash over a quarter of his body.” [Insert picture here, usually something that I don’t want to see in my Facebook feed because I have an absurdly low gross-out tolerance. Seriously, if I think of something icky, I can’t eat for hours.] “What could this be? How should I treat it?”

• “I just received the results of my daughter’s” [insert name of test here, such as 23andMe genetics, Great Plains Labs OAT, or Philippe Auguste toxicity] “results.” [Insert copy of lab results, (not always) with child’s name redacted.] “Can anyone help me interpret these and figure out what supplements to order?”

• “This week we started” [insert names of supplements, oils, or medications] “, and suddenly my son is melting down every ten minutes, stimming like crazy, and pooping all over the house, even though he’s toilet-trained. What could it be?”

I think these types of posts are a bad idea. Not because the parents/caregivers are reaching out for others’ experiences, but because I suspect many of them are substituting internet wisdom for actual medical advice. Three weeks ago I saw a video post of a child in the throes of an obvious grand mal seizure. The accompanying paragraph stated that the seizures were new, continued that the child had begun experiencing multiple seizures every day, and sought advice on how to handle them. My horrified reaction was, “Are you kidding me? Get off Facebook and get that child to a doctor.” (I did not post my horrified reaction. Should I have?)

It is true that the “medical establishment,” in general, lags behind parental experience when it comes to treating autism. Indeed, if I may speak for the medical establishment, its position still appears to be that there is no treatment for autism. Martin’s former pediatrician, from before we moved, never understood what we were doing with Martin’s autism doctor. When I asked the pediatrician what she knew about biomedical intervention for autism, she replied, “Nothing. Just what I’ve heard secondhand, which is that it doesn’t work.” (Still, she never stood in the way of our biomedical journey. I respect that. Also, one of her practice partners was nothing but interested in what we are doing to recover Martin.)

Facebook parents are great. In some areas, they may know more than doctors. But they are not doctors. And some of them are also misinformed, or downright crazy. (Sorry, readers. Deep down, don’t you know it’s true?) I dedicate a lot of my time to reading books and scientific articles about autism, attending medical conferences, and researching on-line. None of this takes the place of spending four years in medical school, passing medical boards, and completing a residency. None of it gives me a comprehensive perspective on health, or the ability to make competent medical decisions for my child without the assistance of a doctor. Heck, to be honest, I don’t even understand some of what I study about autism. I’m more of a humanities type of gal, one who took “Chemistry for Non-Science Majors” to fulfill her college core requirement.

Which brings me to my point: If you can in any away avoid it, crowdsourcing your child’s medical care is not the best choice. The medical establishment does not represent all doctors. There are credible professionals who both (1) understand immune disorders like autism and how to overcome them, and (2) hold medical degrees. Use Facebook and your other contacts to find one of these professionals. Do your research, read a lot, and bore yourself with medical science with the aim of making sure that you find a professional you can trust. If you need to, try fundraising to cover the costs of the consultation. That can work—I know parents who’ve managed it. Seek a Generation Rescue grant. Go into debt. (It happens. We live in the real world.) Whatever you have to do, try to bring your child to a medical professional at least occasionally. Please.

The benefit of living in 2014 is that, at least in some small measure, and Martin’s former pediatrician notwithstanding, more doctors are starting to get a clue. Parents who recovered their children ten years ago, or even just five years ago, had far fewer choices than we have today. Let’s take advantage of that. We can rely on fellow parents for empathy, guidance, and encouragement. We probably should not count on them to be scientists.

Support. The Supportive Kind

Posted on April 23, 2013 by findingmykid

Friends who know I have a son with autism mean well, but sometimes, even in their effort to be supportive, they say the wrong thing.

Here is the statement I hate most:

“All kids do that.”

Now, if you’re a friend of mine, and you’ve ever said about Martin, “All kids do that,” please do not worry. I know your heart is in the right place. I know you want to help. And this post is not directed at you, or at anyone in particular. Believe me, I’ve heard, “All kids do that,” from almost everyone within the limited circle that knows about Martin’s diagnosis.

I know from reading other blogs that I’m not the only parent who detests “All kids do that.” When someone says, “All kids do that,” then regardless of what that person means to convey, I hear one of two things:

1. “I know Martin has autism and all, but don’t you think you’re going overboard? Maybe you’re a little hysterical about the whole thing, or you like to complain?”

2. “I have absolutely no inkling about the realities of your daily life with Martin.”

Yes, I know that even neurotypical kids “have a favorite color.” On the other hand, if you board a subway and find that all the yellow seats are taken, can you expect your neurotypical kid to panic and run out the closing subway doors, without a care whether you are following? If your kid says the moon on his pajama top is yellow, and you suggest it might look more blue, do you assume bedtime will be delayed an hour while he howls inconsolably? Have you ever had to purchase napkins in different colors so that your family could practice sharing the yellows without a meltdown?

And I know that even neurotypical kids “tend to repeat themselves.” On the other hand, unless you live with autism, I am guessing that your kid has never lost awareness and stared into the distance, uttering some combination of words scores of times. I am guessing that your kid does not continue repeating even when he’s alone in a room, his words like a proverbial tree falling in the woods, and then falling again, and then again, and again. I am guessing that your kid’s brain does not get stuck in a groove so deep that he becomes physically unable to cease perseverating. There are times when Martin’s need to repeat himself—“Our President’s name is Obama. O-B-A-M-A. The last letter is A. Obama is the President. Do you know how to spell that? The last letter is A. Our President’s name is Obama. Do you know what our President’s name is? It’s Obama.”—reaches such intensity that, if I were to duct-tape shut his mouth, his arm or leg would have to flail in compensation until he could speak again.

(Don’t panic, dear readers. I’ve never tried any such thing. I just know it’s true.)

“All kids” do a lot of things. But they don’t do them like a kid on the spectrum does.

So what does help? What should someone say, if not “All kids do that”?

A friend of mine (let’s call him Ted) once lost several family members in a house fire. Ted and I lived more than a thousand miles apart at the time, so I wasn’t present for the immediate aftermath or the funeral. A few weeks later, when it was time for me to call, I asked another friend, Deb, what I should say to Ted. Deb is a minister, she’s wise, and her own father had died recently. She counseled (I’m paraphrasing):

“Say you’re sorry about the loss, and then talk about anything else. Follow his lead. When you’re grieving, distraction is a blessing.”

I called Ted and said I was so sorry for his loss and wished we lived closer together. He responded by asking how I was doing, and the conversation moved naturally to catching up on each other’s latest activities. We talked jobs, law (two attorneys, boring!), mutual acquaintances. Once, after a pause in the conversation, Ted said, “You know, they were so close to the door when they collapsed. It was the smoke. They almost made it out,” and I knew that Deb had been right. Ted’s mind was so consumed with loss that the twenty minutes we’d just spent talking about other topics were like a vacation for him. And immediately after saying, “They almost made it out,” Ted asked if I’d seen some movie over the summer. The house fire did not come up again.

When you encounter me, know that for at least 23 of the preceding 24 hours, I have had almost nothing on my mind except autism and recovery. I’ve been giving pills, cooking special foods, corresponding with parents on-line, reading about the latest treatments, cleaning air purifiers, mixing clay baths, filtering water, completing HANDLE exercises and concocting RDI games, fighting for a special-education placement, juggling therapy appointments, navigating social-work bureaucracy, keeping Martin’s doctor up to date, and worrying about what vaccinations are doing to our children.

You can ask me how Martin is doing. I will respond, “We have our ups and downs,” maybe add one or two recent achievements, and then move on. Here are suggested topics I would probably rather discuss than Martin’s autism:

• How are the Rangers play-off chances looking? Will Lundqvist win the Vezina a second time?

• Why is it still winter at the end of April?

• Is the new Jackie Robinson movie melodramatic? Does melodrama ruin a good story? Did it ruin Argo?

• Who is going to be the next mayor of New York City?

• WNYC reported that 70% of home sales in Brownstone Brooklyn are all-cash deals right now. Seriously, 70%?

• Is it okay to put a cat on Prozac?

You get the idea. There are a million things to talk about that are not autism.

And if you really, really want to talk about autism, say you support us. Adrian’s mother once set the gold standard in that regard. Adrian was visiting his country of origin and staying in the family home. One evening he and his parents and siblings crowded around a computer to Skype with me and Martin back here in the States. As it happened, that day Martin was at his worst. He would not sit with me or look at the computer. He failed to respond to any questions, or even acknowledge his father and grandparents and aunts and uncle on the screen. After 30 seconds I gave up and released Martin, who jogged around the room, yelling gibberish.

It was a painful moment for me, and though he didn’t say anything, I could tell it was painful for Adrian, too.

Evidently, so could Adrian’s mother.

After we finished with Skype, Adrian went out to dinner with friends. When he returned to the family home that evening, everyone else was in bed. On the kitchen counter was a note from his mother. Loosely translated:

“Martin will get better. I believe in what you’re doing. Love from Mamá.”

Next to the note was a plate with a cookie.

That’s all we really want, any of us, right?

A little faith, and a cookie.

Because They Know

Posted on December 30, 2012 by findingmykid

If you’ve been reading this blog for a while, you know about my love-hate relationship with social media. Something about operating on-line makes people thoughtless. Combine that with my hyper-sensitivity on autism and child issues—the result is potential meltdown every time I log on.

One particularly problematic area for me is constant Facebook updates about amazing children, written in some superficially deprecating fashion. “No other kid in Caleb’s figure-skating lessons can even axel. Can’t believe I can’t afford anything better for a kid who already lands a lutz!” Or: “I really love Woody’s new teacher. Look at this certificate she made him for getting the highest reading scores in the class.” Or: “Clementine is district chess champion. I feel a little less like I’m depriving her by not being a soccer mom.”

I get bitter.

Strangely, it is only the amazing-kid updates of distant friends that bother me. I like reading when my close friends—the kind of friends I visit, and telephone—post about their children.

I’ve come up with two reasons for the difference.

First: My close friends don’t do the superficially self-deprecating thing. They just brag. I’m not sure why that’s less offensive, but it is.

Second: They know about Martin.

When it comes to social media, I’m constrained, because we’ve chosen to keep Martin’s autism confidential. Adrian and I are careful not to post anything that makes our son appear atypically developing. We share the one picture in ten in which Martin actually looks at the camera. We write the cute things he says only when they sound like what any four-year-old might say, or else we edit to keep the gist while fixing the words. Of Martin’s true successes, I cannot boast on-line. “Martin chased a boy at the playground for, like, at least five seconds before he lost interest!” “Martin had a four-exchange conversation with his babysitter!” “In the midst of bolting down the sidewalk this afternoon, Martin turned around to see if I was following him!”

My close friends know about these successes, even if I can’t share them publicly, because they know about Martin. Last Memorial Day, as we do annually, Adrian and Martin and I got together with some of my closest girlfriends from high school. This year six families attended the gathering. The other children, all older than Martin and all typically developing, played with him as if he were their own little brother; they were patient, occasionally teasing, responsibly keeping him from trouble. From the parents I heard nothing but swooning. Martin was talking so much more than the previous year. Martin’s eye contact had improved. Martin had better command of his movement.

No strange looks to endure. Nothing to cover. Only compliments.

I felt like a million bucks.

When Martin and I visit his doctor in Chicago, we follow a two-day pattern. On day one, we fly from LaGuardia to O’Hare, rent a car, see the doctor, buy groceries at a Whole Foods Market, and check into a hotel “suite” with kitchenette, where I prepare Martin’s dinner. On day two, Martin and I eat breakfast at the hotel, return to the doctor’s office if any follow-up is necessary, then spend the afternoon at a friend’s home in Elmhurst, not far from the airport, and finally catch an evening flight back to LaGuardia. The Elmhurst friend is a high-school classmate, with a toddler of her own, and a most considerate hostess who prepares some fantastic vegan lunch for me while I co-opt half her kitchen to cook for Martin.

Several months ago, I awoke sick on day two of a Chicago trip. My head was pounding, and I was nauseated. A hot shower didn’t help. Nor coffee. Nor dry toast that I ate with my head resting in my palm. And poor Martin—I had no one to help out, and with no energy or patience, I was content just to get him and our things moved somehow to the rental car.

Almost the moment that I settled onto my friend’s sofa in Elmhurst, my situation began to change. My shoulders relaxed. The headache evaporated. It had been tension, of course. I’d gone to bed with a slight cramp in my neck, and made myself sick by worrying all night about what I would do if I got sick and had no one to help with Martin. Once we arrived in Elmhurst, I knew that if necessary I could say, “I need to crash in your bed for the rest of the day. Here are Martin’s pills and food. Good luck.” And my friend would have replied, “See you tonight. Yell if you need anything.” There was no longer any need to worry, and I felt better.

That’s the way it works, with friends who know about Martin’s autism. They’ve got my back. They procure food for Martin, cook for him, ask about his needs, encourage his friendships, celebrate his successes. And so I do the same for them. It’s like we’re one big family, sharing kids. I want to hear about their amazing kids, because those kids are mine, too.

I can’t take that feeling to social networking in general.

I suppose this blog is my brag book, instead. My anonymous brag book.

Sorry about that, readers.

Not the best-quality picture! Martin was so determined to flush this airport toilet with his foot that he climbed onto the fixture to manage it. I hardly had time to whip out my smart phone and capture the moment.

Developmental Delays

Posted on June 29, 2012 by findingmykid

Martin and I are in Texas, visiting my parents. Previous visits here brought Martin unmitigated happiness, as he basked in Grandma and Grandpa’s attention and enjoyed school-free all-day playtime. This trip has been different. Almost as soon as we arrived he became moody and crabby—and asked to go home.

After a few days I realized that Martin has matured, socially. He misses his little friends and interacting with other kids.

I decided to take him to a toddler playgroup sponsored by the church I attend when in Texas.

I didn’t know any of the families attending, so I faced the usual question: What explanation do I give?

I’ve admitted already that I hide Martin’s autism, constantly. My blog is anonymous, and Adrian and I choose not to share Martin’s condition.

The playgroup presented more challenge than usual. We were there specifically to spend time with other toddlers, all of whom were neurotypical (at least as far as I could tell). We were strangers asking to be welcomed. And the differences were bound to show.

What to do, what to do?

Martin, who is about to turn four, was the oldest child there. The next-oldest was a boy almost three, the son of the playgroup’s coordinator. After some brief introductions, I approached that boy’s mother and said:

“Thanks so much for having us. My son has some speech and language delays, so socially, I guess, he is probably right about where your son is.”

That was it.

No hiding, no blaming Martin’s quirks on tiredness, or on speaking Spanish better than English, or on being shy. And no reference to the A-word. I said he has “some speech and language delays” and left it at that.

We spent 90 minutes at the playgroup, and Martin did nothing to indicate that his issues went beyond “some speech and language delays.” He was recalcitrant, to be sure, but neither oblivious to the other kids nor obviously ASD symptomatic. He made eye contact, tried a variety of activities, and spoke to the adults. No tantrums erupted. When I had to leave to visit the restroom, I asked Martin whether he needed to join me. He considered, then responded, “No. I want to stay here.”

Martin’s conduct at the playgroup, along with my choice of introductions, got me pondering a conversation I had weeks ago with his Track Two doctor. The topic was whether the A-word still applies to Martin. Autism, as I understand the condition, is defined by symptoms, not by causes. If a person displays enough of the symptoms, to enough of an extent, then s/he is classified as on the spectrum.

If Martin no longer displays many symptoms, and the ones still present (like repeating words and questions) are infrequent, does he still have autism? Was my statement—“some speech and language delays”—accurate, even if we are still battling the underlying causes of autism?

I don’t know the answer, of course.

But I’m over the moon just to be asking the question.

Hiding It

Posted on April 15, 2012 by findingmykid

Kenji Yoshino, a law professor, wrote a book called Covering. To “cover,” according to Yoshino, is “to downplay a disfavored trait so as to blend into the mainstream,” and the pressure to cover is universal, because everyone possesses some attributes that society stigmatizes. Subtle coercion to cover, the author argues, imperils even our civil rights, because society penalizes those who refuse to cover, who refuse to mask their otherness for the sake of fitting in.

I’ve been thinking a lot about Yoshino’s thesis, because I exert a lot of energy in “covering.” I hide the fact that I am an autism mom, and when it comes to Martin, I conceal his ASD—the condition that, arguably, influences his life more than any other right now.

As I’ve explained on this blog, Adrian and I have chosen not to be public about Martin’s having autism. Our closest friends and relatives know, as do our immediate neighbors, and Martin’s doctors and caregivers. Beyond that, we’re tight-lipped.

We withhold the information from more casual acquaintances—people who don’t know Martin well but will probably remain in our future social circle—because we believe that Martin will not always have autism. We don’t want anyone’s dealings with the recovered Martin to be prejudiced by his having once had autism. Indeed, we don’t want anyone’s current dealings with Martin to be prejudiced by his currently having autism.

We withhold the information from strangers so as not to suffer their pity. I don’t want Martin subjected to preconceived notions of autism, not even for a moment. And no matter how much I might want special treatment at in a given situation (waiting in a long line, for example, or chasing Martin down in a clothing store), I refuse to allow anyone to think we need special treatment.

So, yes, I cover. I pretend that Martin is tired, or shy, or unfamiliar with the topic at hand, or better at speaking Spanish than English, or better at speaking English than Spanish. (In later posts I’ll explain more about my techniques for concealing autism. I don’t want to make this post too long.) If pressed for an explanation, I use a euphemism. A TSA agent asked me why she needed to hand-search the dozens of pill and liquid bottles I refused to run through the X-ray machine; I said my son has a “neurological disorder” and that X-ray can change the composition of his medications. An acquaintance inquired why we hadn’t tried to place Martin in a private preschool in our neighborhood; I responded that Martin has “some minor attention issues” that we want to “take care of” before kindergarten.

Are we wrong to keep Martin’s diagnosis a secret? Possibly. Through our actions we may contribute to the isolation persons on the spectrum; if we’re hiding something, does that suggest we believe it’s something that should be hidden? We might also be failing to set an example. If we really believe in biomedical recovery from autism—we do—shouldn’t well tell the world to watch our son and bear witness to his progress?

It comes down to parenting. If I were making the choice for myself, maybe I would sacrifice my own privacy, and risk prejudice, in order to set the example. Many “Aspies” are very public about their way of being in order to combat discrimination (and have created at least one organization dedicated to opposing autism recovery). Our son is too young to make that choice, and as his parents we have to err on the side of protecting our own.

So that’s that. For Martin’s sake I am willing, in at least one thesis, to tear at the fabric of our civil rights.

Once upon a time, I was a teaching assistant for constitutional law. What would my professor think today?

More Praise of Friends

Posted on December 30, 2011 by findingmykid

I have eleven close girlfriends from my high-school class. “The twelve,” we call ourselves. We’ve had bumps in the road, big ones, and yet 21 years after graduation, we’re more or less intact.

And when it comes to Martin, these friends have joined the struggle in ways I could have not imagined.

It was a high-school girlfriend, an EI practitioner, who first identified Martin’s disorder as autism and got us started in the road to intervention and recovery. It was another, a chef, who recently came to stay two weeks with us when Martin started eating meat, to prepare his special meals. It is others who read this blog, who offer listening ears, who email regularly just to ask how he’s doing.

Now comes yet another debt of gratitude. A high-school friend, who still resides in my hometown, sent a Facebook message, asking after Martin and what she could do to help. I hesitated, then reminded myself that I’ve decided to accept as much help as I can get, and made a request:

“I could use some venison.”

That must have sounded strange to my friend, who knows me as a long-time vegetarian. Probably it sounds strange also to anyone who doesn’t know that, in the semi-rural area where I grew up, people hunt. A lot. Before I became a vegetarian at age 16, I ate venison by the pound. It’s so lean and protein-dense, just what we’re seeking for Martin these days. It’s also difficult to procure, in Manhattan.

My friend responded that getting venison might be tough; the economic climate right now means most folks eat all of what they shoot.

I know, I said. No expectations.

Let me see what I can do, she wrote.

A couple weeks passed. I’d nearly forgotten the request when this friend’s chat box appeared on Facebook again, to say she had venison for me, stored in the freezer on her family’s farm.

As luck would have it, one of my brothers happened to be visiting our hometown last week, and then coming down to New York City on Monday to help my mother with Martin while we travel. I dispatched this brother to meet my friend and retrieve the venison, which now is snug and secure in my freezer.

“Hand-off was a success?” I texted my friend after she met my brother. “You rock so much. Thanks a million.”

“Yup…. No prob. Hope he enjoys. Mainly spiedie meat…hope that’s ok.”

Spiedies are a dish regional to the area where I grew up. They consist of intensely marinated meat skewered alongside vegetables and grilled. I panicked, briefly, my mind on the myriad non-Martin-friendly ingredients that might be in marinade. “Is that the cut, or has it been marinated?”

“Not marinated! I believe it is the cut but not cubed.”

“That is so ultra-perfect I can’t even say,” I texted, relieved and grateful to the point of effusion. “You are the bestest.”

“Nah…just a friend.”

Your blogger, headed from Israel into the Kingdom of Jordan.

Your blogger, descending to the ruins at Petra, Kingdom of Jordan. And thinking about Martin.

The Literary Crowd Weighs In

Posted on December 14, 2011 by findingmykid

I’m a writer. Have I mentioned that? A writer of more than this blog, even. I’ve referred in various posts to my being a lawyer. I don’t think I’ve said that I also write. Essays. Fiction. Stuff.

I belong to a five-person writers’ collective. We meet monthly to discuss each other’s recent work. This month, for the first time, I told the other members about this blog and asked for their thoughts.

I made the request before last weekend’s “card-counting” incident. Since then, I’ve reconsidered whether I should have brought this exercise to the writers.

What the hay. What’s done is done, and I got some worthwhile editorial comments at our meeting last night. I’ve decided to diverge from my musings about Martin and share some of the suggestions, to give everyone an idea of where I might head with the posts. I’ve grouped the ideas into bullet-points. Lawyers love bullet-points. Sometimes it carries over into their other writing.

More in-scene action. I give a lot of space to pondering, analyzing, explaining, and (in the word I used above) musing. My collective does not disapprove of that, but finds the “scenes” most enjoyable, such as Martin interacting with the boy in the museum, or shaking a waiter’s hand. I’m also asked to provide more balance by describing events that do not necessarily evince progress, i.e., that illustrate the reality we live with today, pre-recovery. (“The positive parts are presented in-scene,” said Writer Paul, “but the bad parts are presented in more of a distant and diagnostic fashion.”) I suppose, if I strain my memory, I can come up with a few anecdotes about self-stimming or lack of joint attention.

More Adrian. I mention my husband often, but I’m not allowing him to be enough of a “character,” to occupy fully his own role in Martin’s story. For example, I should stop summarizing conversations I have with Adrian, and instead quote his voice. I should occasionally allow Adrian some blog space for reactions and commentary, too. I’m still contemplating these ideas, and whether I can further exploit Adrian as a character while maintaining his privacy as, well, a person.

A wider cast. We travel. We have friends. Martin goes to school and on playdates. We encounter a lot of people, and I should consider letting more of them color our adventures. I’m wondering whether that means I need to keep coming up with aliases. I’m starting to have trouble keeping them straight.

More about writing and lawyering. I can make myself more human, and perhaps appeal to a broader audience, if I lasso in aspects of my life beyond Martin’s recovery. (Strangely, my writers’ collective operates under the impression that I have a life beyond Martin’s recovery.) I’m still contemplating this idea, too. Months ago I read an article purporting to describe the top ten things bloggers do to lose readers, and one of them was going off-topic. This is “a parent’s real-time blog of autism recovery,” not “a parent’s real-time blog of whether she’s still going to turn that novel draft by 2012.” So we’ll see.

A glossary. I’m doing a decent job of keeping the autism science to a minimum, and thereby not alienating readers outside the ASD community. (I took credit and pretended this was intentional. Faithful readers know the truth: I don’t understand the autism science and will look foolish if I try to present it.) At the same time, I may throw around terms unfamiliar to a new reader, thereby forcing him/her to rummage older posts in search of a definition. I should consider a glossary page that collects ASD-insider terms.

I should say that my fellow writers are good for more than criticism. They also talk about what they like. Apparently this blog engages the reader because it is not clear where the journey will end, whether Martin will recover. The reader feels invested in the quest for more information about autism, its sources, and its defeat. In that vein, the pictures help. Seeing Martin in action, even if only from behind, lends an immediacy to the reflections.

I was happy to hear, also, that I come off as well-read, reasonable, and hardly kooky at all. Though perhaps my fellow writers just said that because I was sitting with them, in person?

Finally, the overall quality of the writing, wordsmith-wise, was deemed high. That was comforting. One of Martin’s service providers once said to me, “You probably aren’t that concerned with it for purposes of the blog, but you do write so well.” And I thought—not that concerned with it? Yeah, sure.

The A-ha Moment: Part Two

Posted on November 20, 2011 by findingmykid

(This is the second in a series of posts, begun here last month.)

“There’s something we’re missing,” I said to Adrian after I read the article about a six-year-old boy whose autism had disappeared. “There’s something more we can do.”

I was ready to do whatever it took, to make any sacrifice or pay any price, to get back the bright and engaged boy I knew Martin could be. But I had no idea how, or which direction to turn.

After Martin was diagnosed, Adrian and I had got, from friends and family members, recommendations of people we “really should talk to.” I’d never followed up; I tend to be a go-it-alone kind of gal, and didn’t see myself finding solace in an “autism parent support group,” the path I thought I’d be walking if I started reaching out. Now, feeling lost, I decided to exploit some of those contacts.

My first call was to the wife of a once-removed business contact of Adrian. Neither Adrian nor I had ever met this woman, or her husband, who live in another city. I’ll call her Annie.

Annie answered the phone at the time we’d arranged by email, and I explained the situation: Martin’s diagnosis, the behavioral therapy, my frustration about not doing enough.

“I’m glad you contacted me,” Annie responded. “My son is nine years old, and recovered from autism.”

Those words. He’s recovered?

“Yes, completely.”

I grabbed a pen and notepad. “Tell me more?”

Annie, God bless her, spent a full hour on the phone. She had “dropped out of life” for four years, she said, in order to recover her son through every medical, holistic, traditional, and behavioral approach she could find. It had been hard work, especially knowing whom to trust and what to try. In the beginning she’d been told that only behavioral therapy was available. She hadn’t considered biomedical recovery until a friend got her interested in the topic. Once they started biomedical recovery, the difference was amazing. The traditional doctors told her the process would never work. She ignored them. Her only standard became whether a treatment might hurt her son.

(As I’m writing this, from my scrawl on that yellow notepad, ten months after the conversation, I hear in Annie’s words exactly what I would tell a parent if one were to call me today.)

Annie told me about RDI therapy instead of ABA. (She had pulled her son out of traditional one-on-one ABA therapy, a decision I also made some months later.) She told me about the Yasko profile, Generation Rescue, genetic mutations, hormone treatments, available therapies. My head was spinning. The key, Annie concluded, was to find a doctor with strong traditional medical strengths who nonetheless would ride the cutting edge of new treatments. She gave me the name of a doctor halfway across the country, an associate of the excellent Track Two doctor we now use for Martin.

I hung up the phone in a different place than I’d been an hour earlier. I spent the afternoon chasing down websites and phone numbers. I printed pages and pages. By the time Adrian arrived home that evening, I had a full presentation prepared for him.

I began with, “This is what we’re going to do.”

Finding My Kid

A parent's real-time blog of autism recovery. Start-point is a diagnosis of ASD. End-point is unknown.

Category Archives: Autism Community