The Never-Ending Story

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

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

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

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

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

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

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

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

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

Curse the Night

Christmas Day, 1:30 am.

I lie, awake, next to Martin, in his bed. He too is awake. Christmas Eve he went to bed about 8:30 pm, eager to get to sleep so that Santa could come, and dropped off immediately. Adrian was seeing Star Wars: The Force Awakens with my father and brothers, so I had time to finish wrapping gifts and even bake some ginger spice cookies, which turned out terrific. I thought about updating my Facebook status with some ditty about the peace and tranquility of Christmas Eve.

At 11:40 pm, just as Adrian and I had gone to bed, Martin woke. Night waking, like bedwetting, is so rare nowadays that I can’t remember the last time it happened. Martin can still take a while to fall asleep, but once he does, he’s out till morning. Tonight, he called out, saying he thought he saw it getting light outside, and asking whether Santa had come. I told him that it wasn’t even midnight yet, and that he could go back to sleep.

He hasn’t gone back to sleep. He is so concerned with getting back to sleep for Santa Claus that he’s worked himself into an anxiety attack, crying and wheezing. Adrian spent some time trying to comfort him, to no avail. Since 1:15 am, I’ve been here, in Martin’s bed, soothing him, hoping for sleep of my own, wondering what Christmas Day will be like when I’m exhausted.

Here’s the thing about being awake in the middle of the night: When I’m lying in the darkness, all my fears grow. Every single fear. From work deadlines to household finances to body image—they get worse. Problems loom insurmountable. I think about this issue and that issue, this concern and that concern, until finally I crash into the unmentionable fear: that if Martin never recovers fully, this will be my life forever. Autism will be my life forever. There will never be a time when my child achieves independence. There will never be a time when I can turn back to my non-Martin goals, to what I want to achieve for me.

Why do I call that fear “unmentionable”? Because it is selfish. Because it borders on blaming Martin for my own shortcomings. Because it affixes my personal journey to factors that depend on Martin but over which he has no control. Because my official position is that Martin will recover fully, and it’s only in the wee hours that doubt makes inroads. It’s only when I want to be sleeping, or reading, or writing, or even working, or anything other than lying next to a boy who can’t stop fidgeting, crying, laughing—only then do I think, “What if he’s done getting better? What if this is as good as it gets?”

It’s just better not to mention it.

Christmas Day, noon.

I must have dozed off, in Martin’s bed, sometime after 2:00 am. I woke at 3:50 am to find him asleep, finally, and then I returned to my own bed.

I woke again at 7:45 am, to the breathtaking melody of Martin, down the hall, conversing with my father, who is visiting. (Yes. Conversing. Answering questions and asking them in turn. How old are you, Poppa? That’s old. I’m seven. What year was it when you were seven? Grandma was already born then. Are you older than Grandma?) We had left one special gift unwrapped by the tree, and Martin played with that until everyone was up and ready to open gifts. Once all the gifts were unwrapped, Martin asked:

“Is there another gift to me from Santa?”

I realized right away what he wanted. The trombone. When he’d made his Christmas list, he’d included a trombone. At the time, the trombone seemed no more desired than the other gifts, most of which he received. In the day or two before Christmas, long after all gifts had been purchased, the trombone acquired new gravitas. Martin began to speak frequently of the trombone Santa was bringing him, and how he planned to learn to play the trombone, and how he would become good enough to play in a marching band by high school. Trombone, trombone, trombone. But seriously, I was not going to interrupt all other plans to procure a toy trombone.

“No, honey. I think that’s all that Santa brought you.”

Martin started to cry. “‘You get what you get?’ You just get what you get?” He was quoting our pastor, who upon assigning parts for the Christmas pageant had told the kids, “No complaining. You get what you get.”

I conveyed to Adrian why Martin was upset—I mimed playing the trombone—and Adrian moved in to comfort him, explaining that Santa might have thought that he is still too young to learn the trombone and needs to wait another year.

And then—Martin pulled it together. He was still upset, but he stopped the tears and moved to pouting and whining instead. No full-blown meltdown. No screaming. He asked, “Santa thinks I’m too young? Maybe next year?” All in all, the response seemed more age-appropriate than autism-indicative.

It’s noon now. Everyone has eaten a special Christmas breakfast, which was gluten-free French toast with cranberry compote. Martin played with his new gifts (he’s favoring a set of Beatles figures, and also a “play the trombone” app I downloaded hastily to his iPad) and then accompanied Adrian to the gym. My brothers are playing backgammon. My father is napping. The house is quiet. I’m starting to prepare Christmas dinner: cannellini-bean latkes, roasted Brussels sprouts leaves, and quinoa pilaf. Last night’s fears are last night’s fears.

I’m thinking about updating my Facebook status with some ditty about the peace and tranquility of Christmas Day.

Naysaying

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

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.

Seven Things You Didn’t Know About Me. No, Wait. Most of Them You’ve Probably Guessed

1.

I wish I could take more credit. Last week I enjoyed a drink with a former work colleague, a mother of three young boys, who does not know that Martin has autism. She and her husband are both lawyers, full-time. (I don’t know how they do it.) She was complaining that none of their kids can fall asleep alone; her husband stays with the older two, while she falls asleep, and usually spends the entire night, in the youngest’s bed. Does Martin fall asleep by himself? she asked. Yes, I responded. I can put him in bed and leave. “You are so lucky!” my former colleague said. She’s right: I am lucky. Still, I wanted to say, “Yes, he falls asleep by himself, but he also has autism, and curing his autism has taken over my life. Would you choose that deal?” I wanted to take credit for doing more than standard mom tasks, especially since my conversation partner works while I don’t, and has three kids to my one. Instead, I let her think I have it easy.

2.

When I hear about other ASD kids making more progress, or faster progress, than Martin, it gives me hope. It also makes me angry and resentful. Why not our turn? Why not yet? What more do I have to do?

3.

I suspect that some of the interventions we do are just so much hocus-pocus.

4.

I am angry that we “did everything right” and Martin still has autism. While I was pregnant with Martin I avoided alcohol, watched my protein and nutrient intake, chose organic foods, refused to get my hair highlighted, had Adrian clean the cats’ litter boxes, exercised without jostling my belly, and got ample rest. (The good old days.) I breastfed Martin for six months exclusively, and 21 months total. We soothed him by the Happiest Baby method, ensured a proper sleep environment, read to him, played with him, coddled him. When I see a parent on the subway, at midnight, unjustifiably yelling at toddlers who are clutching Doritos and Mountain Dew, I think, “Really? You get the neurotypical kids, while mine has autism? That’s fair.” I try to redirect that ugly thought by remembering that, however unfair my lot feels, those sleep-deprived, junk-food-fueled kids have it worse. And thank goodness they don’t have autism added to their burdens. The redirection succeeds, but I can’t deny that the initial thought happens.

5.

I become impatient with Martin over behaviors that I want him to control, even though I know they are symptoms of his ASD and not in any way his “fault.” Skipping. Chewing on a straw in the corner of his mouth. Letting himself fall slack. Taking 20 minutes to manage any task, even to pull up his pants after using the toilet. Worst, I get annoyed when he doesn’t pay attention to what I’m saying, or to what he’s doing, or to what’s going on around him. I know I shouldn’t. I try hard not to. Most of the time I can stop myself. When I can’t, I console myself by remembering that plenty parents of neurotypical four-year-olds lose patience because their children are acting like—four-year-olds.

6.

I have doubts about whether we’ll get there. I have them often.

7.

I love the BeeGees, the Doobie Brothers, Peter Gabriel, and Edith Piaf. That’s not related to Martin’s autism. It’s just kind of quirky.

Wandering? It’s the direction that counts.