Tag Archives: recovery

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.

 

New Sleep, No Crutch

Posted on by findingmykid
5

“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

Posted on by findingmykid
16

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

Posted on by findingmykid
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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.

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

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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.

Let’s Talk Honestly About Really Crappy Days

Posted on by findingmykid
6

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.

For better or for worse, he’s my guy.

Autism-Blind

Posted on by findingmykid
2

Martin was ignored yesterday.

The church that we attend now—much more traditional than the young, edgy congregation we left behind in Manhattan—includes a “children’s time” in the service. Children younger than age 10 are invited to gather near the chancel, where the pastor engages them with a few questions and tells a Bible-related story. Martin goes, too. The pastor, to his credit, usually calls Martin by name and addresses him once or twice, even if no response it forthcoming. I can’t say that Martin participates fully in the experience. I can say that he likes being included; he runs forward without hesitation.

Yesterday, the regular pastor was away, so children’s time was headed by a choir member who is also an elementary-school principal. Eight children participated. The principal began by greeting several (not all) of the children other than Martin by name. Then, without making eye contact with Martin or calling his attention in any way, she launched into her lesson. Martin, who is unfocussed and irritable this week (see the reference to nystatin in Saturday’s post), responded by fidgeting, lying on the floor, and turning away from the chancel to face the congregation, wearing a goofy smile. Finally, he stood up and drifted toward the organ, which fascinates him.

The principal probably could have halted 90% of Martin’s behavior by catching his attention and saying, “Martin, let’s sit and listen now,” or even just asking him a question about the Bible lesson.

Instead, she ignored him. Talked to the other children. Pretended like nothing was happening.

From being in the church choir, which sits only a few feet away from the chancel where the children gather, the principal must know that Martin sometimes needs extra help. I suppose that, once she was in charge of the group, she might have thought that I wouldn’t want Martin “called out.” In truth, I’d much rather have him called out briefly by an adult than allowed to call himself out with five minutes of inappropriate behavior. Or maybe she just didn’t know what to do, which would be disappointing in an elementary-school principal. In any event, children’s time was unproductive for Martin and uncomfortable for me.

Which brings me to one of those moments when I realize that Martin’s autism has taught me something without my noticing it.

A dozen years ago, a friend of mine mentioned (I have no recollection of how the subject matter arose) Dwayne “The Rock” Johnson being half-black.

“He is?” I asked. “What’s the other half?”

“Asian Pacific Islander. Why? What did you think he is?”

“I don’t know. A white guy, I guess,” I answered, honestly. “Maybe I never really thought about it.”

My friend, who is African-American, laughed. “I guess it’s good if you’re color-blind,” she said. “But I’m not sure thinking that everyone is ‘a white guy’ is the way to go.”

This morning at church brought that moment to mind. It is tempting to believe that the great equalizer is pretending that we are all the same. We are not the same. A person who is black, who practices Orthodox Judaism, who is male, who has a wife instead of a husband, who is single, who uses a wheelchair, whose English language skills are limited, who lacks formal education, or who [insert any of six billion variations here] does not have the same needs I have. It is not good to be color-blind, or physical-challenge-blind, or hyperactivity-blind, or autism-blind.

When your child has autism, you don’t get to ignore difference. Difference follows you around, speaking too loud and out of turn. It demands your attention. I am far more likely, today, to consider whether any trait, from intelligence to handicap to race, is influencing how an individual perceives his environment. I am far more likely, today, to ask myself what I can do to help.

I no longer act like the best course is pretending we’re all the same.

Lest it seem like church yesterday was a wholly disappointing experience, I am happy to report that other parents in the congregation get it. I was worried about Martin’s antics. As I glanced around I saw no disapprobation, only encouraging expressions ranging from, “Calm down. Martin’s with the other kids and he’s happy,” to, “He might be over there checking out the organ, but, hey, at least he isn’t playing it.”

The principal’s mistake notwithstanding, I think lots of us are marching toward embracing myriad needs.

Otherwise

Posted on by findingmykid
2

Are you wondering what Martin said last night?

Last night Martin said, “Otherwise.” He came up with the word. He used it properly and in context.

You’re thrilled? You can’t believe it? Here’s what happened:

Adrian and I put Martin in bed at 8:00 p.m. Martin was all worked up, absolutely could not go to sleep. We are fighting yeast again (Martin versus yeast overgrowth, round IV, get your tickets now) and started nystatin on Friday. Martin’s doctor warned me that we might have a difficult week with yeast die-off; so far, our “difficult week” has entailed diminished attention and focus, fleeting eye contact, and unrelenting hyperactivity. Fabulous.

After an hour of bouncing on his mattress and (needlessly) visiting the potty, Martin started yelling the he wanted to go in “the big bed”—my and Adrian’s bed, where Martin is allowed only in the morning, to wake up. Adrian, exasperated, suggested that we let Martin fall asleep in our bed and then move him back to his room. I agreed but said it had to appear to be Adrian’s idea alone, so Martin wouldn’t start thinking he can bug me for big-bed access.

Adrian called Martin to the family room, where we were watching House of Cards. I hid behind the sofa (Adrian’s idea alone!) and listened. Adrian told Martin that he could take a stuffed animal and climb into our bed, on one condition: that he settle down and go to sleep. Did he understand?

“Yes,” answered Martin. “I will go to sleep. Otherwise I will have to go back to my bed.”

That was it! No prompts, no hearing anyone else say it first, nothing. Martin casually lobbed “otherwise” into the conversation, as if it were an everyday word.

As if he’d never once tested in the bottom third percentile for expressive language skills.

Now, if only he’d settled down and gone to sleep….

Go, Diva!

Posted on by findingmykid
Reply

For the week between Christmas and New Year’s, we rented a condominium in a Florida Keys resort. (That’s the way our family rolls, with Martin’s dietary restrictions—vacationing only where we have a fully equipped kitchen to use and organic groceries nearby.) Martin was allowed to bring two stuffed animals. He chose (1) “Boo,” a preposterous Santa-hat-wearing dog he received for Christmas, and (2) a brown bear that had arrived in a lovely gift basket for the family.

“Martin,” I asked as we drove to LaGuardia, “what is the bear’s name?” Martin sat in his booster seat, clutching both stuffed animals. I figured he should get first crack at naming the bear.

To my surprise, Martin had an immediate response. “Goadie Va,” he said, or something similar. Goat Eva? Go, Diva? Was he talking to me? Am I a diva?

“Goadie Va?” Adrian asked, from the driver’s seat.

“Goadie Va,” Martin replied, with certainty. 

Adrian and I looked at each other. I made a who-the-hell-knows kind of shrug and said, “Okay, the bear’s name is Goadie Va.” No further discussion on the name was had, as our family, Boo and Goadie Va in tow, headed south. 

Behavioral therapy for autism often stresses acting neurotypical and giving a child the tools for participating, even marginally, in a neurotypical-dominant world. Certainly that was my experience with ABA, a technique that only frustrated Martin. Although Martin spent only a couple months in ABA—I found the therapy almost useless (for us), and we abandoned it for RDI—I may have internalized too much of the message that Martin should be instructed to act a certain way. To this day, I find myself saying, “Let’s try that again,” until Martin evinces a satisfactorily neurotypical effort.

“Martin, that man said hi to you. How should you respond? I’m sorry? Let’s try that again.”

“Martin, you walk through the doorway. You don’t flop through it. Let’s stand up and try that again.”

“Martin, you sit at the dinner table. No leaving your seat to jump up and down or touch the clock. Let’s try that again.”

There are approaches to treating ASD premised on the idea of joining an autistic child in his own worldview. The best-known among these approaches is probably The Son-Rise Program®. Son-Rise is not a therapy we’ve tried, so what I know comes from reading and from communicating with families who do participate in the program.

According to the Son-Rise website, “Joining in a child’s repetitive and ritualistic behaviors supplies the key to unlocking the mystery of these behaviors and facilitates eye contact, social development and the inclusion of others in play.” In the midst of my over-used “Let’s try that again” orders, I ponder the Son-Rise argument. Take, for instance, my telling Martin not to run from the family room to the front hall, touch the front door, run back to the family room, fall onto the sofa, and then start over again. Would Martin and I better enjoy our time together if, instead, I ran with him from the family room to the front hall, and touched the front door, and ran back to the family room, and fell onto the sofa, and then started over again, all by his side? Would he trust me more? Would I be more his ally, and less a monotonous dictator?

Martin hauled Boo and Goadie Va all over the Florida Keys, from the Hemingway House to parasailing in Islamorada. He slept with them every night, and provided regular updates on their preferences, such as, “Goadie Va wants to wait in the car. Boo will come in the store.” Never once did he call the bear anything other than Goadie Va. I chalked it up to Martin finding a quirky sound (“Goadie Va. Go, diva!”) and fixating on the sound.

Near the end of our trip, for the first time, I noticed Goadie Va’s right paw. Stitched on the paw pad, clearly and adorably, was the name “Godiva.” Of course, Godiva. Goadie Va had arrived in a Godiva gift basket at Christmas. Martin can read. If a bear has a name stitched on his paw, obviously—duh!—that’s the bear’s name.

I almost never spend time in Martin’s world, almost never try to adopt his black-and-white Weltanschauung. I wonder: In my relentless advocacy for neurotypical behavior, how much am I missing?