Category Archives: Progress

This Again

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Months have passed since I had to write a post like this one. I had hoped to be done with them forever.

It’s 4:58 a.m., Monday. I haven’t slept yet. I’ve dozed, a few minutes at a time, mostly on Martin’s bedroom floor. One of these catnaps cut circulation to my left arm, and I snapped awake with stinging-nettle pain from shoulder to fingertips. I mean, hey, it’s a floor.

Now I’ve given up trying to sleep. I’m sitting in a chair next to Martin’s bed, using my right hand to restrain his ankles and my left hand to tap on an iPad I’ve shielded from his view. I’m right-handed. Typing with my left is taking forever.

Granted, at this moment I have no shortage of time.

Martin was exhausted yesterday. (Seems strange to call Sunday “yesterday,” because for me it’s one continuous day.) In addition to recent lethargy, he’s been foggy and tired since our Thursday visit to his Track Two doctor; we hit some delays, resulting in Martin’s being awake until 11:00 p.m., and then again from 1:30-2:15 a.m., and he hasn’t got back on track yet. He went to sleep last night by 7:30 p.m., with a sitter. Adrian and I were dining with friends. We arrived home at 10:45 p.m. Martin woke at 11:30 p.m., before Adrian and I could get to bed. We took turns sitting with Martin for an hour, then left him alone to find his own way back to sleep.

No such luck.

He spoke, called to us, and griped from his bed, keeping me from any meaningful rest. At 2:35 a.m. he appeared in my and Adrian’s room, demanding attention. I led him back to bed and camped out on his floor, hoping my presence would help. It hasn’t. Martin has alternated chatting (“the Empire State Building,” “bunny rabbit,” “Mommy is sleeping on the floor!”) and singing (the Battle Hymn of the Republic, scattered Johnny Cash lyrics), in constant motion—legs a-kickin’, tiny hands tapping the headboard.

Now it’s 5:40 a.m. (I told you this typing was taking forever), so Martin’s been awake more than six hours. He doesn’t mind my restraining his ankles. Nor does it seem to be helping. He’s downright jolly, wide awake.

He’ll have to stay home with me today; I can’t dispatch him to school on four or five hours’ sleep. Yesterday, Sunday, I was tired enough to feel confused and mildly depressed. I’m not looking forward to a Monday on no sleep, unable to touch accumulated office work and rearranging all plans to entertain a crabby boy.

I think he’s beginning to nod off, at long last. His breathing has regularized, his sing-song faded. Still, I feel his ankles bounce under my right hand. Martin is simply unable to settle. Even as he dozes, his mind sends energy jolts.

What is perhaps most frustrating is that sleep—Martin’s sleep—was both our clearest indicator of progress and the biggest single lifestyle improvement for our family. When he sleeps, we sleep, at least a little more.

If we lose the sleeping, I don’t know what I’ll do.

Not Going So Well

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Promises do nothing for me.

I don’t believe anyone who assures me s/he can achieve a particular goal with Martin. I’ve admitted that I’m a skeptic. Hearing that a treatment definitely will help Martin, or that Martin certainly will recover, increases that skepticism. Team Martin has no room for promisors.

This week we visited Martin’s excellent Track Two doctor, and—though I of course prefer upbeat news—it was not unwelcome when she admitted that Martin seems less physically healthy, and more autistic, than he did during our August visit. Indeed, her words confirmed my own observations (as I’ve written); any other assessment would have left me suspicious. She even pointed out some symptoms I’d not yet noticed, such as visual self-stimming.

I have nothing against reality. I can’t hope to coordinate Martin’s recovery if I don’t see the bad and the ugly infringing the good.

Here’s an uncensored account of where we stand: According to the doctor, Martin exhibits less “spark” than over the summer. His eye contact has faded along with his name responsiveness. His belly, which had flattened, is distended again. What I thought were self-inflicted scratches resulting from yeasty itchiness (which also is present) instead appears to be a rash, possibly from exuding toxins/pathogens through the skin. He is self-stimming more, his muscle tone has slackened, and he’s again cycling in and out of lethargy.

Yeah.

I’m relieved to report that the doctor’s evaluation included an action plan along with the bummer news. We got the yeast under control earlier this year; we may have taken Martin off the yeast-fighters too early. He’s going back on them now. For the next few months, we’re going to concentrate on annihilating yeast overgrowth again, and on starting bio-film work. Martin’s tests have revealed bajillions of pathogens in his gut. They’re suspected to be hiding in and below bio-film, the pissant little bastards. I wish I had a teeny-tiny Lilliputian-to-a-Lilliputian Glock with which I could take out yeast flora and gut pathogens. Alas, instead I have the likes of Yeast Aid and saccharomyces boulardii.

So that’s where we stand, warts and all.

Am I discouraged? Daily. Am I encouraged? With every glimpse of where we can get to.

However infrequent, right now, those glimpses may be.

One More Memory, to Add to the Others

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I found one more journal entry that’s proving especially helpful as we wage this second great battle against yeast overgrowth in Martin’s belly. It’s dated 16 February 2011, not long after we started biomedical recovery:

Martin has been—autistic. Like, really bad. Worse than Asperger’s Syndrome, way below high-functioning. His sing-song self-assurance speech has come back, he walks on his toes, he has no focus, the percentage of times he responds to his name has tanked, and the nights have been hell. Just hell. He’s up for hours at a time, unpredictably. Sometimes 1:30-4:50 a.m.. Sometimes 3:20-5:45 a.m. Sometimes he wakes at 5:05 a.m., and that’s it. He’s up. Adrian and I are beyond exhausted. Last Saturday the hopelessness set in, and I broke down, weeping at my desk as Adrian promised that it would get better. That it had to. (Since then Adrian has taken more of the burden at night, and I’ve rebounded. Not a finally-getting-back-to-the-gym kind of rebound, but I make it through the day without tears. That’s what this fight does to me. Some days there are tears, and better days there aren’t.)

I would be freaking out about Martin’s apparent regression, but I remember the process Kathleen mentioned once before. It’s called die-off. Martin has yeast overgrowth in his belly. Our first goal is to starve the yeast, to kill it off through attrition. That’s why we’ve cut sugar, such as juice, from his diet, and why we’re drastically reducing carbohydrates, which break down into sugar. The medium-chain triglyceride oils he takes are intended to help kill yeast. When the yeast begins starving, it flares up and causes a temporary spike in autistic symptoms. That’s die-off.

It’s been two-and-a-half weeks since we cut all gluten and soy from Martin’s diet, and one week since we started giving him the MCT oils. In response to my desperate questions, Kathleen assures that enough time has passed for die-off to start. I am skeptical. Two-and-a-half weeks? Before we’ve cut all grains? I can’t believe it’s so easy to reach the die-off stage. I had assumed a longer, more arduous route.

It is absolutely possible, Kathleen says. These are signs of die-off. We’re making progress.

Memories. Shoot, Now I’m Glad I Wrote Them Down

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Before I started blogging in August, I kept a computer “journal” of sorts, wherein I jotted notes of how we were doing, in case I ever did want to start documenting the process. I haven’t opened that file since early August. This morning, however, I dug out the relevant USB storage device to search for a few paragraphs I remember drafting on the topic of maintaining friendships. (Look for that post for later in the week.)

My readers know I’ve been frustrated lately, feeling stuck. Reading what I wrote earlier this year provides perspective. These entries, from my own journal, stunned me:

4/20/11. Parent interview at [Big Imposing Hospital]. Martin’s scores range from 1st percentile fine motor skills to 97th percentile school readiness (letters, numbers).

4/25/11. Martin is not as good as he was over the weekend. He’s a little out of it. In the late afternoon, after Samara leaves, he becomes fussy, whiny, irritable. Finally, just before 6:00 pm he has massive foul diarrhea, and I recall that he has not pooped since Saturday morning.

4/26/11. Martin isn’t having a great day. No desire to work with [his ABA therapist]. [His PT] calls him “weak.”

4/30/11. In the mail come [the Track Two doctor’s] notes from our call. Among them is written, “Mother getting discouraged.” I’ve got to do a better job with keeping upbeat.

5/1/11. Take Martin to church with chips, books, toys. He hides under my maxi-dress, and his seltzer with kombucha squirts all over newcomer in front of us. Throws a tantrum leaving church. [A friend] patiently holds my purse and his bags as I strap screaming child into car. Then I shut door and—silence. He’s locked inside. [My friend] nods in salute to the silence and hugs me.

5/2/11. Martin is hot in defiance phase. Hates every change. Doesn’t know what he wants. Refuses even what he loves, like coconut oil.

5/3/11. At 7:40 pm (during bedtime) he unloads three days’ worth of poop, mostly undigested food. I consider the irony of seeing my carefully prepared concoctions emerge from the other end in more or less the same form.

5/6/11. Through the grapevine I hear about a typically developing playmate of Martin who has not succeeded in getting a pre-school placement for next fall. She will stay at the New York Kids’ Club instead. I feel some schadenfreude creeping in. I tell myself that under the circumstances, schadenfreude does not make me a bad person. At least, not that much.

5/9/11. Horrible bedtime. Martin is so worked up, and he fell asleep on the school bus coming home. For the first time in weeks I have to restrain him. He struggles and cries. I miss a business call at 8:00 pm.

6/6/11. A disaster of a day. Martin is awake since 1:40 a.m. He is miserable, whining, crying all day. [His babysitter] cannot get him to nap. Nor does he sleep even in the school bus. I am running on two hours’ sleep. Call with Kathleen is unfocused, wandering. I express doubts. I wonder if we’re making progress. School report says Martin was in “more of a daze than usual” during circle time.

It’s November now. Martin sleeps, eats, and poops well. He engages in only limited self-stimming behavior, such as running back and forth. He walks heel-to-toe. He possesses sufficient body control and proprioceptive awareness that he rarely stumbles. My big complaints these days are continued poor attention, especially in group settings; echolalia and language delay, including the inability to ask questions; and fussiness when we deviate from plans or Martin doesn’t get what he wants.

I’m finding it helpful to recall the days when I had to worry about screaming fits, inability to sleep or digest food, and a craving for secure space that had Martin hiding under my dress.

I’m finding it very helpful.

Feelings, Nothing More Than Feelings

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Twelve years ago, I brought my cat William to the veterinarian and said something was wrong with him.

“Is he eating?” the vet asked.

“Same as usual,” I said.

“Using the litter box?”

“Yes.”

The vet slid her hands along William’s sides, under his belly. “How’s he acting?”

“Seems fine.”

She bent back William’s ears and peered inside and finally asked, “Well, what’s the problem?”

I told her I didn’t know what the problem was. I couldn’t identify anything particularly different about William. I just had a feeling that something wasn’t right.

I find myself operating on the “feeling” principle a lot these days. This morning, after Martin left for school, I had a feeling that he is improved, howsoever marginally. (“Improved” meaning “closer to neurotypical.”) I can’t say why. We didn’t have an outstanding breakfast; he refused to eat anything but the pear chunks from his bowl of buckwheat cereal, pre-soaked walnuts, and pear. (I make gluten-free cereal twice per week, under the “needs a few carbs” rule.) He was mostly quiet, he didn’t want to use the potty, and he resisted his HANDLE exercises.

We did have a breakthrough on Saturday. Friends had brought their daughter, who is a few years older than Martin, over to play. At some point the little girl got hold of her father’s iPhone and opened an app by which she could tap the screen to play music. She tapped away, and the iPhone sang a disjointed cacophony of notes. Martin, sitting nearby, watched the activity with interest but also seemed confused. Twice he turned his gaze toward me, to read my facial expression about the iPhone performance. One symptom of autism (and a symptom that Martin shows) is lacking ability to read facial expressions, and/or lacking interest in doing so. Martin looked to me twice, not once. It was no accident.

Funny, though, I didn’t have a feeling on Saturday that Martin was improved.

Today I do.

Who knows? It’s easy to attack intuition. On a rational level, I can discredit my sense that Martin may be improved. On a gut level, the feeling colors my whole day. I feel like Martin’s doing well, so I do well.

Twelve years ago, the vet found nothing wrong with William by appearance or outward physical condition. Only with her stethoscope did she discover that, by her estimation, William’s heart was beating more than 400 times a minute. My hunch had led us to the misfire between the upper and lower chambers of William’s heart that that eventually would kill him.

When it comes to kids—human or feline—I think I know my own. I hope.

So Do I Still Have to Be Honest?

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This was to be the day. I’ve been thinking about it all week, and today I was going to post a disclosure—a confession. It would have read something like this:

We’re not making progress, at least not that I perceive. We got off to an explosive start: Martin zoomed from restlessness to sleep, from lethargy to energy, from drifting to engagement, from low muscle tone to standard body-type. Then, late in summer, the advances dwindled, and Martin backslid in attention and language.

It’s almost winter now, and I’m wondering if we’ll get back on track and whether the burden of an ASD recovery journey really makes sense. I’m even ready to admit that, had I felt this way in August, I would not have started blogging. It’s too difficult, exposing your own aspirations and vulnerabilities on-line (even if anonymously) when the very subject you’re blogging has beaten you into the gutter. Back in August, when I wrote my first post, we weren’t chugging along like we once had been, but it just felt like we’d pulled into a rest stop on the recovery highway. A check of the map, maybe a snack, and we’d be back on our way.

But then the ignition refused to turn. Two or three months later, the biomedical car remains stalled, and Triple-A has not shown. I’m stuck.

 That’s approximately the ode to frustration I had in mind to post.

By now, if I’ve set this up properly, you’re asking why I say what “was to be.” Why am I quoting the ode to frustration, instead of posting it directly?

The answer is that Martin climbed out of bed this morning and said, “Hello, Mommy.” When I plopped into the chair in his room and asked if he’d like to sit on me, he responded, “Sit on you,” getting the preposition correct if not the idiom. He asked to use the potty and did his business without clawing at his legs, which he’s been scratching raw from yeast itch. When I helped him get dressed, he put his arms into his sleeves and then—instead of letting the shirt stay bunch around his chest, as usual—he tugged the hem down over his belly, looking like any neurotypical three-year-old getting dressed. He glanced down with each step as we descended the stairs to the kitchen. He ate his waffle with a fork. When I asked if he wanted more, he said, “I want more waffle.”

It was a good morning.

True, it was just one good morning, and later this afternoon Martin got spacier.

As it turns out, for now, one good morning was enough. I decided not to let my icky desperation take the starring role in today’s post.

Still, I had to reveal what I’d thought about writing. That’s my commitment to honesty here.

This morning I thought I heard the engine try to turn. I can’t wait for tomorrow. We may leave this rest stop yet.

Stupid Yeast

Posted on by findingmykid
9

We’re battling a renewed outbreak of yeast. That’s why Martin’s attention has dipped so low. I’m certain now. All the signs point to yeast. He’s scratching his legs. He’s grinding his teeth. His pee stinks. His energy flags. He has trouble settling to sleep. He giggles drunkenly.

Finally realizing that yeast is at work here (again) stirs mixed emotions. On one hand, I’m beyond frustrated. We started fighting yeast in February, and by the beginning of summer we had it under control. I even allowed more carbohydrates to sneak into Martin’s diet. Not many, but more—quinoa pitas, rice crackers, banana muffins. On my mental checklist, “balance yeast” had thick line through it. But now yeast is out of whack again, and I’m learning that as soon as one strain is defeated, another may flourish.

On the other hand, I’ve expended so much attention on Martin’s diminished attention without knowing the cause. I’m relieved that we have a culprit now. The yeast realization provides a roadmap. We conquered yeast once before, and we’ll do it again, adjusting diet and anti-yeast supplements (sac boulardii, &c.) as necessary.

Indeed, pinpointing yeast helps me filter Martin’s current issues. Yeast clearly does no favors for attention, energy, or language; I’ll call those the “yeastier areas,” and admit that they’re in bad shape. Yeast doesn’t seem to affect body control or mood as much. I posted several days ago about what’s going right, even now. To that list I will add that Martin is steady on his feet, engaging in few self-stimming behaviors, transitioning well, and more or less happy. I’ll call those the “less-yeasty areas,” and hope that their current chart-topping performance means we’re making progress despite the yeast flare.

I’ve said before: It’s an amorphous enemy, this autism. ASD is defined by symptoms, not causes. The causes may differ for every child, and they may change within one child.

Then again, every child—neurotypical or otherwise—is different, too, and every child changes throughout life. When we’ve finally wiped out autism, Martin will create some new worry to keep me up at night.

Well, bring it on.

It’s Like a Cruise Ship, But This Ain’t No Pleasure Cruise

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I’ve expressed some frustration at feeling stalled lately. I’m looking for the leaps of progress we saw early in Martin’s recovery, when we sped from not sleeping to sleeping, from low muscle tone to good muscle tone, from lethargy to energy. Nothing so monumental has happened for a few months. Since before I started blogging, in fact.

For my own sanity, I need to talk about what’s heading in the right direction. We’ve got the answers to open-ended questions, as I posted yesterday. At Martin’s bedtime this evening, he and I exchanged a few words in a manner that mildly resembled a “How was your day?” conversation. His joint attention is flourishing; frequently he checks my face to see if I’m listening. (When he wants me to be listening, that is. Often enough he chats for his own amusement, no audience desired.) His relationship-understanding may have improved lately. He’s taking better notice—I won’t claim obedience—when I speak sternly (“No! No going in Mommy’s office.”). And earlier today, I took advantage of the Muppet Honkers performing “Honk Around the Clock” to make up a silly dance. Martin diverted his gaze away from Sesame Street (victory!) to me (victory!), understood that I was joking (victory!) and laughed (victory!).

Amidst these tiny successes, what bothers me is the big deal: the lack of general attention. Name responsiveness remains low for the moment, and Martin is rarely “with you” unless it’s a one-on-one situation. His teachers say he needs constant monitoring to stay focused in class. When he and I are playing, I find him about half the time talking to me, and about half the time just talking.

Over the past couple days I’ve sensed some inkling that the attention might be changing direction, maneuvering ever so slowly. It’s too soon, though, to get my hopes up, so I’ll just leave that notion on the table and follow up in a later post.

Remember the movie Titanic? Bill Paxton’s character Brock Lovett says something like, “The ship’s too big with too small a rudder. It doesn’t corner worth a damn.” We’re caught these days in oceanic currents of environmental toxins, EMF’s, chemicals, induced labor, processed mush disguised as food. And here come Adrian and I, trying to divert all that with our little toolbox of therapies, supplements, and organic foods.

It feels like steering a cruise ship with a rowboat paddle.

Got Questions? Martin Has Answers

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Adrian reported yesterday that Martin has been giving substantive answers to questions. That’s not a skill I know Martin to have. Martin can repeat questions. He can respond yes or no to a yes-or-no inquiry. (That’s a recent development; Martin added “yes” to his vocabulary only this year.) He can express a preference when presented with two alternatives, such as, “Do you want to watch Ernie, or Big Bird?” And he can provide a concrete, expected response when presented with a known scenario—What song is this? Which instrument is this? But he cannot yet answer an open-ended question with various possible responses.

At least, I didn’t think he can. I was suspicious when Adrian said otherwise. According to Adrian, he had asked Martin, “What’s the name of a teacher at school who plays the guitar?” and got a name. He also had asked Martin, “What did you do today with Miss Jenny [a babysitter]?” and got a response that involved the playground and a merry-go-round.

Lucky shots, I thought.

Still, I decided to test the claims. Samara was sick today, so I picked Martin up from school and took him for a walk. After suitable time had passed, I knelt to catch his attention.

“Martin! What did you do in school?”

Martin made eye contact and responded, “What did you do in school?”

“That’s right. Can you tell me what you did?”

“Gym.”

“Gym? You had gym? You went to the gym?” Gym. That’s a real answer. I was giddy.

Thus egged on, Martin expanded his answer: “Class—gym class.”

Gym class! Although I had no idea whether in fact Martin did have gym class today, those two words provided sufficient proof for my standards. Martin can answer questions. I wonder how long this has been going on.

I’m going to keep pushing the skill. Martin had better get himself ready for plenty of open-ended questions.

Heck, maybe by Christmas we can achieve something as advanced as nodding his head for yes.

It’s in There

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I’m frustrated, insofar as I feel like we haven’t made any significant progress since mid-summer or so. Things are trending upward, yes, since the bad month of September. Still, I feel stalled. Anxious. I wonder whether we will meet our goal of making Martin neurotypical by age six or so. I wonder whether we will ever meet our goal.

Adrian is quick to point out that I may be too close to the situation. We have made progress, he says. Martin’s proprioceptive awareness has improved, to the point where he consistently looks downward when descending stairs. And just this weekend Martin demonstrative excellent pacing, walking at our speed while holding hands with us, stopping when we stopped.

That’s all true. But I see continued—even, perhaps, increased—echolalia. I see lower name responsiveness than over the summer. I even see some scratching and messy visits to the potty, signs of yeast overgrowth. Yeast! I thought we were done fighting yeast months ago.

In times like these, I take comfort where I can find it. Adrian and I had the opportunity last week to speak with Martin’s school instructors. His speech therapist said this: “Martin has his good days and his bad. Some mornings I feel like I’m not reaching him at all. Other mornings he comes in, greets me by name, and sits down, ready to work.” That reflects our experience at home. Some afternoons Martin flits from toy to book to floor to window, unable to settle, deaf to his own name. Other afternoons he plays contentedly with his Thomas trains assembled on the coffee table, indistinguishable (except for limited language) from a typically developing peer.

That’s the comfort. So long as Martin sometimes behaves like other three-year-olds, even if it happens only when the blue moon rises, I know he has that capability. I know that the attention and sociability and self-awareness exist within him, and that the only hurdle is discovering the combination to unlock those skills.

I gaze upon him and think: Neurotypicality. It’s in there.