Monthly Archives: March 2014

A Whole Different Animal

Posted on by findingmykid
6

Adrian was supervising bath time this weekend when Martin, from the tub, started describing the stuffed animals in his bed: Curious George the monkey, Maisie the tiger, Mitt Romney the elephant, Boo the dog, Godiva the bear and—an aye-be’el.

“An aye-be’el?” Adrian asked. “You have an aye-be’el?”

“Yes,” Martin answered. “An aye-be’el.”

I happened to be passing through the bathroom. Adrian looked at me, as if I should know what Martin was talking about.

So I asked, “What’s an aye-be’el, Martin? Is that an animal?”

“Yes. An aye-be’el is a whole different animal.”

Martin’s kindergarten teachers have said that he often surprises them by being completely on top of a lesson even when he doesn’t seem to be paying attention. Where Martin appears to be directing his focus, in other words, can be deceptive.

The answer came to Adrian suddenly. “Martin, is that something you heard Daddy say? Did you hear Daddy say that an aye-be’el is a whole different animal?”

“Yes.”

“He means an ABL,” Adrian explained to me. “An ABL is a whole different animal. He was playing on the floor when I was making calls earlier.”

Aha! The puzzle came together. ABL stands for asset-based lending. It describes a specific type of credit agreement—a whole different animal when it comes to credit agreements. Adrian, who is a corporate lawyer, had been on the phone all afternoon, negotiating. Martin had entered periodically to stack his blocks on the big rug in Adrian’s home office. He’d probably heard his father say something like, “They want to talk about an ABL? Oh, no. An ABL is a whole different animal.”

Months ago, on a recovery site, I read a father’s post asking how much ASD children, before they recover, are “with it,” i.e., how much the children absorb and will later recall from the time before they are fully communicative. Martin may not be the best example on this, at least not anymore, because these days he’s reasonably far along in his communication skills. Nonetheless, think about the ABL, and then about this: Martin possesses astounding recall of events that transpired years ago. We sometimes have conversations along these lines:

Martin: “We were on this bridge before.”

Me: “I don’t think so, Martin. Maybe this bridge looks like another one we drive over?”

Martin: “We were on this bridge when we went to the lighthouse.”

Me: “Holy cow, you’re right. We went to the lighthouse where you were two years old. Do you remember that?”

Martin: “The lighthouse is red and white.”

We might have been to that lighthouse shortly after Martin’s diagnosis, before biomed, when he still drifted the perimeter of rooms and ignored his own name. But he remembers. It’s all in that head of his.

A close friend of mine was in an elevator with her five-year-old ASD son, who is making wonderful progress but still mostly pre-verbal. (I’ll call him Jason.) They’d had a horrible morning; because of a snowstorm, Jason’s school bus was delayed, they’d had to return to their apartment to call the bus company, Jason had become too warm in his jacket, and finally they were on their way back down to wait again for the bus. Frustrated, Jason acted out in the elevator.

Jason’s mom, my friend, immediately restrained him and prevented the situation from escalating.

The reaction of any decent person who saw this would have been, “Good catch, Jason’s mom! Way to anticipate and be on top of his behavior!”

The reaction of the one man who was in the elevator with them was to look my friend in the eyes, point to Jason, and say, “You need to get that thing under control.”

There are, of course, a thousand tidbits that gall me about what happened to my friend and her son in that elevator.

The most galling is this: Did the ignoramus who made that comment assume that, because Jason has limited speech, he can’t hear and comprehend? Did he think that an intelligent and creative boy doesn’t know what’s being said about him?

(“Ignoramus” was not the first word that came to my mind. You know that.)

Jason probably didn’t look like he was listening, or understanding. Martin probably didn’t look like he was eavesdropping on Adrian’s phone calls, either.

But they were. They always are.

Addendum

Posted on by findingmykid
2

I’m not much for addenda (except insofar as FindingMyKid.com, by the nature of blogging, is one long series of addenda to its “About” page and initial post). Nevertheless, I simply must add four notes to Saturday’s crappy-to-happy post.

1. I wrote, “It may go without saying that we ended up in a rush to get to [Martin’s] afternoon social program at the JCC, and that I left the kitchen a disaster, and that I didn’t get a chance to feed myself much, and that I was feeling worse by the minute.”

We were rushing to get to the JCC by 2:00 pm. We left home ten minutes late, and then I had to take Martin to the restroom to change into new pants. It was after 2:15 pm when I finally dropped him in the correct room. Still, only one other child had arrived, out of the dozen or so who usually attend. “Small group today?” I asked an instructor. “I don’t think so,” she replied. “They’ll be trickling in.” Relieved that we weren’t the only tardy family, I headed to the library to write.

I posted “From Crappy to Happy” at 4:55 pm, just in time to pick Martin up from the three-hour session. As I arrived at the door, an instructor was saying, “Okay, everyone get your coats.” Still—yes, that’s the second “still” in as many paragraphs, by design—she looked surprised to see me. One girl from the group asked, “Is Martin going home with you?” No other parents had arrived yet. The staff seemed to scramble to gather Martin’s belongings, and one had to chase us down the hall because they’d forgotten to include his art project.

Did any of this strike me as odd? No. I suppose I was spending too much time in my own head, trying to keep a good attitude, planning our evening, debating whether to insist that Martin use the bathroom before we left.

He was getting settled in his car booster seat when I saw the rest of his group, wearing their coats, walking along the parking lot to the outdoor playground.

Because the program meets from 2:30-5:30 pm, not 2:00-5:00 pm.

Because, after more than six months at the JCC, I had the times wrong.

Because we never had been late in the first instance.

I said, “It looks like your friends are going to spend some time at the playground. Would you like to join them?” Martin said yes. I felt pretty dopey as I walked him to the playground and explained my confusion.

2. The first time I picked Martin up, while the staff were scrambling to gather Martin’s belongings, the head instructor told me that Martin had had his best afternoon ever. He had talked and talked, been engaged, and participated in every activity. When I dropped him off (early!), I had explained that, although his swim trunks and towel were in his backpack, he’d been sick all week and should be excused from swimming if he didn’t want to get in the pool. Martin almost never wants to get in the pool, so I expected him to take the excuse and run. Nope. The instructor said that as soon as Martin saw the others getting ready, he asked to get into his swim trunks, too. Not only that, he showed off for the staff, with some trick the instructor called a “froggy move.”

Saturday evening, while Martin was in the bathtub, I asked whether he could show me and Adrian the “froggy move” he’d done in the pool. Without hesitating, Martin shifted so his feet were flat on the bathtub bottom, maneuvered himself into a squat position, and grabbed his knees. “This,” he said earnestly, “is how a froggy looks in the water.”

3. I wrote, “In the end, [Martin] ate the dippin’ plate. The GAPS diet isn’t easy, especially when it comes to packing for school. If Martin accepts a dippin’ plate once or twice more at home, I’ll give it a go for school lunch.”

Sunday afternoon, Martin ate another dippin’ plate, albeit with a little assistance. So that’s what he took for school lunch today: carrots and yellow bell peppers (included because yellow is his favorite color), dip made from avocado and fermented garlic, and a side of pear. (GAPS diet says to do fruit alone, not with a meal. Cut me some slack. I had to fill that last compartment in the lunch container, and rice crackers are out for now.) The dippin’ plate doesn’t really have protein, so he had a protein-heavy breakfast of bone broth and chicken-and-egg bread with ghee, and I sent some sunbutter treats for his morning snack. Here’s hoping the lunch container comes back empty.

4. On the way home from the JCC, late Saturday afternoon, Martin and I heard both My Sweet Lord and Heart of Gold on satellite radio. For me at least, that combination effects at least a 27.5309% improvement in mood.

Saturday turned out quite well.

Martin's school lunch today: a dippin' plate with carrots, yellow bell pepper, avocado-and-fermented-garlic dip, and pear.

Martin’s school lunch today: a dippin’ plate with carrots, yellow bell pepper, avocado-and-fermented-garlic dip, and pear.

From Crappy to Happy

Posted on by findingmykid
1

Remember the post about really crappy days?

Today is a really crappy day!

Stick with me, though. This isn’t going to be an unhappy post. I’ve been doing too much frustration posting lately, like when I used to do too much middle-of-the-night posting. It’s just not healthy. So today, in this post, I’m going to write myself back to happy.

First: the background. A couple weeks ago, Martin wasn’t himself. If you read this blog regularly, you know that. Here’s an excerpt of an email I sent Martin’s biomed doctor March 13:

Most nights he’s taking two hours or more to fall asleep, and waking two or three times between midnight and 5:00 a.m. He is tired all the time. He’s also “floppy” again. He is extremely hyperactive; charcoal tablets, salt/baking soda baths, and clay baths haven’t helped. His teachers have been telling me that he’s inattentive in class and not responding to his name. He had a pee accident at school this week. Sunday afternoon he had a meltdown so severe that my husband was unable to get him out of the car.

We’ve been on nystatin two weeks, and the yeast hasn’t responded, as far as I can tell. Martin remains itchy.

In general, I have an unhappy kid right now, and I feel horrible about it. Obviously, we need to make changes.

Things have got better since I sent that email. I took Martin off nystatin, switched him to full GAPS diet (more on that in a later post), and on the advice of his homeopath, increased some of his “support” drops (Inflamma-Tone and Liver-Tone, among others). He took a turn for the better, in terms of increased awareness, and some reduction in time to fall asleep, and less itchiness.

This past Tuesday afternoon, he got sick. The school nurse called me to retrieve him, and I ended up having to keep him home the rest of the week. If you’re wondering why I haven’t posted much this week, try being housebound with Martin. While sick, Martin had good language and connection, but he slept poorly and was crabby.

Second: this day. Adrian’s alarm woke us at 7:00. Adrian and I got home last night at 11:00 pm from the City. I had to feed the cats and strain Martin’s chicken broth, so it was 12:15 am when I got to bed and 12:40 when I got to sleep. Martin woke three times between then and 7:00 am. He was never up long. Still, each time I had to get up, tuck him back in, and then get myself back to sleep. Figuring 30 minutes for those diversions, I got just under six hours’ sleep, interrupted. This was after a week when I was exhausted from his night waking and unable to nap because he was home with me.

Martin was still sleeping at 7:00 am. I would have preferred to get at least 30-to-45 more minutes myself. Not possible: Adrian had scheduled an early gym visit, because his trainer had something else to do later today. So up we were. I had Adrian fed and out the door before Martin left his bed.

I tried to convince Martin to dress himself. He did, eventually, but required 15 minutes of crying and whining to reach that point, and even then didn’t make it to the socks. He declared breakfast—chicken broth, salmon sausage, and a bit of banana—to be “all things I like!” Still, he dawdled. We ended up rushing to get out the door for his 10:00 am special-ed reading program at the public library. Amidst the hurry, Martin had a meltdown because it was too warm to wear his heavy knit “dog” hat.

We drove to the library. Martin had another meltdown because I said, as I do whenever Curious George comes along, that Curious George had to wait in the car. I delivered Martin, still teary-eyed, to the reading program. Then I walked to FedEx to ship my kid’s stool samples to a lab (biomed parents know that ritual) and proceeded to a coffee shop, where I sat alone, missing the easy camaraderie of the parents from Martin’s old Saturday-morning playgroup in the City.

When I returned to retrieve Martin, he had a meltdown because I hadn’t brought Curious George into the library with me. I suggested that we go to the car, where Curious George was waiting. Martin screamed. In the library. My suggestion, it turns out, was wholly unacceptable because Martin wanted Curious George to “play with him” in the library.

By the time we got home, I could feel myself coming down with whatever’s had Martin sick this week. I told Adrian I needed to lie down for 20 minutes. I climbed in bed and shut my eyes. Within five minutes I opened them again. Martin was running around the house yelling, “Mommy! Mommmm-eeeeee!” I could hear Adrian in his home office, on a call. Not wanting his call disturbed, I said, “Martin, I’m in the bedroom.” Martin ran into the bedroom and jumped on me. I got up. I took ibuprofen for my head, which ached.

For lunch I prepared raw carrots and broccoli florets with avocado-and-fermented-garlic dip. I called Adrian from his home office to come eat with Martin. Because the meal, which I named “dippin’ plate,” was new, I wanted Martin to see that Adrian was eating the same. Martin, however, claimed he needed the potty. He disappeared for 10 minutes, during which Adrian finished his own dippin’ plate and returned to his home office. So much for eating what Daddy is eating.

After I finally got Martin back to the table, he left repeatedly, running to our bedroom, the farthest point in the house, and laughing. It may go without saying that we ended up in a rush to get to his afternoon social program at the JCC, and that I left the kitchen a disaster, and that I didn’t get a chance to feed myself much, and that I was feeling worse by the minute.

When Martin and I finally were at the door, ready to leave, Adrian showed up. He asked, “Why do you seem grouchy today?”

On the way to the JCC, Martin peed himself and lied about it.

Which brings us to this moment. I’m in the JCC library, blogging while Martin enjoys his social program.

Third: the happy. Let’s review this day—

Martin took 15 minutes of crying and whining to get dressed. This was partly my fault. I broke routine by asking him to dress himself as soon as he woke, before he even went to the bathroom or ran around. And yet he still got managed the task. As a bonus, when I asked him to pull his arms inside his shirt, he looked down and said, “Oh, it’s on backwards,” and then cooperated fully.

I’m tired from a long week with Martin at home, plus I’m starting to get his illness. Having unexpected sick days is a hassle. The other days, however, Martin gets to attend a fantastic kindergarten. Adrian and I could hardly be more satisfied with Martin’s special-needs school and his academic progress. I make this point because I’ve seen from autism parenting forums how many families need to consider homeschooling because they have no appropriate placement. We are lucky

Speaking of Martin’s (and now my…?) illness, Martin had a fever! It was the second time he’s had a fever since we moved last summer. Fever is good. Fever is healing. Fever indicates that Martin’s immune system is responding appropriately to illness. That’s progress.

Martin had repeated meltdowns today. There’s a pretty good explanation: He too is tired, and not feeling so hot. (Lest you think I’m dragging a sick kid around town, it was Martin who insisted that he felt better and could go to the library this morning.) Plus, the meltdowns didn’t last long. When he wanted the dog hat, we talked, and he agreed to get Curious George instead. When he screamed in the library, I asked, “Remember last week when you screamed at church and we had to leave?” He took the hint and calmed himself down in exchange for extra playtime at the library. I offered five minutes playtime. He bargained me up to seven minutes. That works.

Martin didn’t eat with Adrian, and then ran away from the table. Each time, I kept my cool. I went to the bedroom where he’d run, took his upper arm, and walked him back to the table without a word. After a couple tries and not getting the attention he wanted, Martin settled down. In the end, he ate the dippin’ plate. The GAPS diet isn’t easy, especially when it comes to packing for school. If Martin accepts a dippin’ plate once or twice more at home, I’ll give it a go for school lunch. Hurray for new stuff.

Martin peed on the way to the JCC. My fault. In our rush to leave home, I didn’t have him sit on the potty. I figured he had just gone during lunch, and I didn’t want to be later than we already were. In the car I could tell he needed to go. When I asked him, he said he could hold it till we got to the JCC. That never works. At least I had spare pants and underwear in his backpack, so the afternoon wasn’t ruined.

I’m getting sick. But the ibuprofen has kicked in.

One of my March Madness brackets is doing fantastic in Adrian’s office pool, with all 16 of its Sweet picks intact. My favorite team plays tonight.

My son is recovering.

And now I’ve written myself happy again.

Martin, sick but managing his iPad.

Martin, sick but managing his iPad.

Curious George lending Martin a hand to recover from illness.

Curious George lending Martin a hand to recover from illness.

 

Link of the Day

Posted on by findingmykid
1

Through the community that is Autism Parenting in the New York City Area (“APNYCA.” I just coined the acronym. You saw it here first.), I know a mother who is a recent and enthusiastic arrival in biomed. She’s started a blog and posted about her son’s experience with hippotherapy. I’ve seen the progress her Jaeden is making, and I like the forum she’s creating. Full Spectrum Essentials—it’s worth a look.

New Sleep, No Crutch

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“You sure you don’t want to try melatonin again?” asked Martin’s doctor, the one supervising the medical side of his recovery.

“No!” I responded. “No, definitely no. That’s one thing we’ve achieved recently. I don’t want to go backwards.”

The days before Martin’s autism diagnosis were dark times: Martin’s neuro-challenges left him so restless, so lost in spatiality, that he could not fall asleep unless physically restrained. Some nights it sufficed to sit next to the bed and hold his ankles to the mattress, so he couldn’t kick. Some nights we had to kneel over him to straddle his body, too. The worst nights, we had to find a way to still his legs, his torso, and his arms—only to watch his head thrash from side to side. No matter what we did, he needed more than an hour to fall asleep. Sometimes two hours. Or three. Even then, we couldn’t let go, or he’d wake.

Martin’s pediatrician, at a loss as sleepless nights became sleepless months, referred us to the chairperson of the department of pediatric sleep disorders at a prestigious university hospital. That “expert” told us to make “picture charts” to help Martin understand what bedtime meant. She also diagnosed “restless leg syndrome” and told us to put Martin on iron supplements, which stained his teeth purple. It was a garish era for photographs of Martin.

Meanwhile, Adrian and I slept in three-hour shifts, one of us trying to rest while the other pinned Martin.

We received Martin’s autism diagnosis in autumn 2010. Once we learned what was really causing his inability to sleep, we purchased a weighted blanket. That did not help, and later was donated to a special-education preschool classmate. Martin’s sleep situation did not change until we started biomed in February 2011. The difference, as far as I can tell, came through (1) restricting Martin’s diet, and (2) melatonin. Melatonin is a hormone that the body produces naturally for sleep regulation, and it can also be made synthetically in a laboratory. The NIH  states, “Taking melatonin by mouth is helpful for disturbed sleep-wake cycles in children and adolescents with intellectual disabilities, autism, and other central nervous system disorders.”

On 31 August 2011, six months into the biomed journey, I posted this:

Almost as soon as we eliminated carbs (and sugar, and starch, and most everything else delectable) from Martin’s diet and added supplements, he began to sleep. As of late March, just for or five weeks into his recovery, Martin was falling asleep in 45 minutes or less and sleeping eleven-to-twelve hours through the night, five or six days a week. We still dealt with night waking one or two days a week, but the compulsive pitching about the bed ceased. Instead, Martin either lay still and chatted to himself or else laughed and acted drunk from his body detoxing.

As of today we more or less count on Martin sleeping through the night. If you’ve been reading this blog regularly, you know that we still have bad nights, and that we sometimes have two or three bad nights in succession, almost always related to Martin lumbering through a detox phase. But by and large, he falls asleep, and he stays asleep.

Until this past October, the sleeping situation, with some variations, remained that way: Martin fell asleep easily, and could be expected to sleep through the night, and when he happened to wake up wouldn’t go down again for three-to-five hours.

Martin takes some prescriptions (among them right now are levocarnatine and compounded piracetem), along with a lot of homeopathic drops and OTC supplements. Whenever possible, I try to eliminate from his daily regimen. So a few months ago, when Martin was on an upswing, I decided to try phasing out melatonin. We’ve made so much progress, I reasoned. Why not investigate whether we’ve resolved some of the issues that made sleep so difficult?

At the time (October), Martin was taking seven drops melatonin before bed. I eliminated one drop every one-to-two weeks. I’d reduce the dose by one drop, endure a few days of Martin taking a hours to fall asleep, wait until he adjusted and fell asleep within 30 minutes, and then reduce by one more drop. By Christmas, I had Martin off melatonin.

Things weren’t perfect. He was taking longer to fall asleep than he had with the melatonin—45 or 60 minutes, instead of 30 or less. But I discovered an unexpected benefit: When Martin woke during the night, he did not stay awake. He fidgeted and called out for me and sought reassurance, and then promptly fell back to sleep. I realized that Martin had been dependent on melatonin to get to sleep. Its absence, at 2:00 or 3:00 am, had prevented him from returning to sleep.

With Martin off melatonin, and capable of getting back to sleep, I’ve been able to attempt something new: nighttime potty training. Until now Adrian and I always left nighttime potty training on a back burner, reasoning that getting up to use the toilet was not worth the hours of wakefulness that would ensue. With that threat gone, we’ve been potty training since the week after Christmas.

As my posts these past few weeks have described, Martin’s been having a tough time. Among other issues, he’s been experiencing evening hyperactivity, and therefore taking hours to fall asleep. That’s why his doctor asked if we’d like to add melatonin again.

The doctor seemed surprised when, in response, I nearly barked my “No!”

Here’s the thing: Melatonin is a crutch. It got us past the long nights while we worked on remedying the underlying causes of Martin’s sleeplessness. Martin no longer needs that crutch. I would rather find and eliminate the cause of the nighttime hyperactivity than use melatonin to mask the hyperactivity’s effects.

The current melatonin situation reflects my overall approach to Martin’s autism. Of course I’m familiar with methylphenidate, amphetamine salts, guanfacine, and so forth—drugs that might improve Martin’s still-abysmal attention span. Maybe one day we’ll turn to such resources (in the end, I remain a pragmatist). But for now, while we have the time and opportunity, I choose to work toward eliminating the cause of his short attention span, instead of using drugs to mask the symptoms.

Biomed. It’s Time

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15

Readers, we’ve known each other a long time now, even if ours is kind of a one-sided relationship. I’ve decided we’ve reached that point where I can shorten “biomedical intervention[s]” to just “biomed.” If you’re new here, or have questions, or detest when people say just “biomed,” then leave a comment, or email FindingMyKid@yahoo.com. Regards!

All Dressed Up

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“Martin, why don’t you go get yourself dressed like a big boy? Want to pick out your own clothes and get dressed?” I asked at nine o’clock yesterday morning. We had all slept late, and Martin was running around the house in jungle-print pajamas.

I didn’t believe that he’d actually get himself dressed. Six months ago, I laid pajamas out on his bed and spent 20 minutes trying to get him to take off his clothes and put on the pajamas. I went away to let him concentrate, returned every two minutes to beg or threaten or cajole, even lost patience (not my finest parenting). Martin continually forgot his task. He rambled about nothing, jumped on the bed, played with Curious George. I absolutely could not get him to focus enough even to remove his clothes.

Not too much has changed since then, except that for the last two weeks Martin has responded to every suggestion, however benign, with a resolute “No!”

Nevertheless, this morning I mentioned getting dressed only once before Martin said, “Okay!” and scampered down the hall to his room.

I went to the kitchen, where Adrian was eating breakfast. “I told him to get dressed,” I said. “I’m not hopeful.”

Barely a minute had passed before I heard Martin running down the hall from the bedrooms, yelling, “Mommy! Mommmmm-meeee!”

I found him standing in the living room, buck naked except for the blue socks he’d worn to bed. He looked straight at me (score!) and asked, “Mommy, am I still five years old?”

“Yes, you’re still five years old. Now don’t forget to change your socks.”

Martin ran back to his bedroom.

I returned to the kitchen. From afar, I heard a familiar sound. Martin’s bedroom dresser has thick metal handles attached to the drawers with leather loops, and when the handles are dropped, they clunk against the wood. The dresser is the last piece of a heavy German bedroom set that my older brothers once shared. As a kid, from my bed at night, I would hear that clunk and know Rudy and Eddie were getting ready to sleep. Now the sound ties Martin to his uncles.

“He opened the dresser,” I reported to Adrian. “I think he’s getting out clothes.”

After another minute Martin came running down the hall again. I met him in the living room. He was wearing clothes.

“You got dressed!” I exclaimed. “You got dressed! Good work! Go show your daddy!”

Martin went to the kitchen through the family room. I went through the dining room and got there first, which gave me a second to throw my fists in the air, jump up and down, and whisper to Adrian, “First time. First time dressed by himself without a reminder.”

Martin arrived. As Adrian picked him up for a hug, I surveyed Martin’s choices. Navy blue sweatpants with CHICAGO printed on one leg. A white sweatshirt with blue stripes. Adrian set Martin down, then snapped the sweatpants waistband to make a confirmation. “You’ve got underwear,” he said.

“Oh dear,” I added. “Martin, you’re doing so well. But you did forget to change the socks. Go change your socks?”

Back down the hall went Martin.

“Am I pushing my luck?” I asked Adrian.

Moments later Martin sauntered back into the kitchen and said, “Actually,”—that’s a favored word right now, the snarky actually—“I’ve decided to wear my sandals today.”

On his feet were Velcro beach sandals, without socks.

It was 34 degrees out.

“Sure, Martin,” I said, content. “Why don’t you wear those sandals until it’s time for church, and then you can put socks and shoes on at the same time.”

I was happy. Adrian was happy. Martin was happy.

Autism, of course, has its ways of changing any day. At church, after the service but still in the sanctuary, I told Martin that he had enough time to run around in the gymnasium but would have to eat his snack in the car. (We had to get to an Anat Baniel Method therapy appointment.) Martin responded by screaming, repeatedly, interrupting the postlude and eliciting annoyance from fellow parishioners. I picked him up and carried him outside. A complete meltdown ensued.

Last night Adrian tucked Martin into bed at 8:00 pm. Martin, who has recently discovered the joy of exiting his bed and running to the living room, went to sleep at 10:45 pm. Unlike Adrian, I cannot fall asleep while Martin is up and chatting. I got to bed after 11:00 pm and was one unhappy camper when 5:00 am rolled around.

Fortunately, as I may have mentioned, yesterday Martin dressed himself without prompts.

Which reinforces this truth: With every new morning comes fresh hope.

Martin plays this weekend in Bedford-Stuyvesent, Brooklyn. I told him he was too big for these baby swings. He responded by putting his "little brother Curious George" in for a ride.

Martin plays this weekend in Bedford-Stuyvesant, Brooklyn. I told him he was too big for these baby swings. He responded by putting his “little brother Curious George” in for a ride.

Diagnosis

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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.

Feel Good

Posted on by findingmykid
2

Feel-good stories fly around social media like air hockey pucks around the table. They go viral: click click click click clack clack click click clack kajing! Goal! All over the internet!

A disproportionate number of these feel-goodies, it seems to me, involve ASD, usually children with ASD. The waitress who brought a new hamburger when an autistic girl thought hers was broken. The garbage man who rewarded an autistic boy obsessed with watching the truck collect dumpsters. The young autistic adult who relates to the world through Disney movies. And so on. You’ve seen them, I’m sure.

A partner to the feel-good stories are the empowering badges, which often appear as Facebook statuses. “This is national autism awareness week. Post this for an hour so that everyone knows autism exists.” “I pledge never to bully anyone with autism. If I don’t see this as your status, I’ll assume you don’t care about bullying or autism.” (I’m exaggerating for effect, but not exaggerating that much.)

I have nothing against feel-goodies or empowerment. On the other hand, when these tidbits are shared by persons outside the ASD community, I feel patronized. Most adults have no inkling what it’s like to live with a person with autism, and cannot fathom how it feels to be responsible for the future of a person with autism. From their hideaways in neurotypicality, they have our token children to help them shed a few tears of gratitude. It’s a catharsis.

I would like to say, please, get your catharsis from fiction. Try Shakespeare, or a melodramatic movie. Or read history, long-ago victories and defeats.

Autism isn’t fiction. It isn’t feel-good. It’s our reality, a reality that’s spreading every day. If you want to feel good about an autistic child, forget the heartwarming videos and articles. Start advocating. Start questioning why autism rates are rocketing skyward and we’re not doing anything to stop the epidemic. Remember that the reason you smile at those feel-good stories is that you don’t have to deal with the non-feel-good moments that fill the rest of the time.

Thanks.

Naysaying

Posted on by findingmykid
1

In Wednesday’s post I included a reference to the “subtle naysayers.” Those are the people who say they support our journey but who often lob jabs or zingers that suggest otherwise. I gave seven examples of statements (e.g., “Is that actually a scientifically accepted principle?”) that, to me at least, translate as, “I think it’s wonderful that you want to help your son, so I’m going to say that I’m rooting for you! Deep down, though, I don’t really think your process of diet, supplementation, and other interventions can recover your son.”

In case yesterday’s post didn’t make the point, here are some other examples of subtle naysaying: “Of course, you need to leave room for Martin just to be a kid. Balance is key. Don’t go overboard.” “I bet there isn’t another mom doing as much as you do!” “Isn’t chelation dangerous?” “I was reading about a family that stopped all supplementation. Their son did even better without it.” “It’s just so hard to believe that mainstream doctors don’t know about this.” “Can you take a break from the diet over vacation?”

And then there’s my, ahem!, favorite: “It’s so great, what you’re trying to do.” What’s wrong with that statement? The word “trying,” which implies lack of success. True champions say, “It’s so great, what you’re doing,” or, “It’s so great to watch Martin’s progress.” Subtle naysayers refer to how hard I’m trying.

In any event, after I drafted yesterday’s post, I spent some time contemplating—that is, I took a shower and had ten minutes to myself—why the subtle naysayers bother me. I won’t mince words: They do bother me! Here’s the reason:

When Martin has a week like this week has been, then at least a dozen times daily the idea of throwing in the towel drops into my head. Yes, I contemplate quitting the recovery process. I hear the little voice that says it would be easier, so much easier, to live according to the traditional notion that autism is a behavioral or communication disorder and therefore should be treated just with behavior therapies.

And when that little voice in my head is speaking, what I need is to hear a bigger, louder voice—preferably outside my head—reminding me that (1) “autism” is the symptoms of an underlying immune disorder, a medical condition that should be treated like any other need to heal; (2) recovery is bound to be a series of ups and downs, and ultimate success is more likely to come from surviving the downs than celebrating the ups; and (3) although it would be easier, right now, to give up biomedical treatment, leaving Martin untreated would be harder in the long run, for him as well as for me and Adrian.

That bigger, louder voice is never going to come from a subtle naysayer. A subtle naysayer looks for cracks, looks for weaknesses, to insert seeds of doubt and coax me away from the “extremes” of the recovery process. A subtle naysayer might think s/he is being helpful: If I’m sleepless, and alternating hope and desperation, and preoccupied with Martin’s special diet and supplementation and everything else, wouldn’t I be happier with none of that to worry about?

So I can’t turn to a subtle naysayer for help. Not even in a week like this, when I need all the support I can get. Indeed, especially not in a week like this, because when I’m at my lowest is when a naysayer is most likely to strike.

Which leaves me with Adrian, other families in recovery, and the few people outside the recovery community who truly understand.

I wish there were more.