Go, Diva!

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?

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

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

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

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

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

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

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

End of disclaimers. Beginning of opinion section—

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

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

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

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

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

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

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

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

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

ASD Recovery Recipe: Coconut French Toast Bites

It’s been a while since I posted a recipe. I can’t take full credit for this one; my friend Stacey (she’s busy recovering her awesome six-year-old) gave me the idea of using Julian Bakery Paleo Bread (coconut) for French toast. I came up with the “coconut” and “bites” innovations, after Martin grew tired of regular French toast. (He hates all things breakfast. I think I’ve mentioned that.)

  • 1 slice Julian Bakery Paleo Bread (coconut), or other acceptable GFCF bread with a traditional texture
  • 1 egg
  • ground cinnamon
  • ground cloves
  • unsweetened shredded coconut
  • coconut oil

In a small bowl, whisk the egg until light and foamy. Add cinnamon and cloves to taste.

Cut the bread slice into squares, approximately ½” in length. Err on the small side when cutting, because the egg and coconut and oil will puff ’em up, and you don’t want “bite-size” to become “gag-size.”

Mix the bread squares into the egg. I let them saturate for a few minutes; this morning the bread soaked in egg while I prepared Adrian’s lunch.

photo 1

Meanwhile, heat coconut oil over medium heat.

Once the bread is full of egg, add some shredded coconut to the bowl and stir gently until the squares are coated with coconut.

photo 2

Fry the bites in coconut oil, flipping once.

photo 4

If you need some extra incentive to sweeten these up, try a few drops of a low-glycemic sweetener like coconut nectar or warmed Manuka honey.

photo 5

Idioms All His Own

We had to wait a few years, and now Martin’s speech skills are finally progressing. He has trouble with more complex formulations, such as asking and answering “why” questions, or narrating a string of events, or using “did” plus the infinitive instead of the past form (“He did went.”). Other than that, he can express almost anything.

On the other hand, when I say Martin can express almost anything, there’s a qualifier: “in his own way.”

Sometimes he’s making up words. I go with it and use the correct term in return:

“Martin, I don’t want you writing on these piano keys.”

“No writing?”


“No marking?” (He means using a marker to write. That’s close.)


“No pencing?”

“Nope, no using a pencil.”

“No craying?”

“Nope, no using a crayon, either.”

Sometimes his formulation leaves me wondering, “What led him to that way of saying it?”:

“Martin, would you stop playing with the telephone?”

He’s in the bedroom, messing around with the bedside phone.


He keeps playing with the phone.

“Hey, get out of the bedroom.”

“Okay. I’m going to go to the room that’s written here.”

He points to the side of the phone, where “family room” is written on the extensions. Then he zooms away to the family room. Most people would have said, “I’m going to the family room,” right? Martin’s choice works just as well.

He likes to make comparisons. Some are natural and make a lot of sense, as when he asked me, “Am I going to have two [Anat Baniel Method] lessons with Miss Sharon today, just like I had two lessons yesterday with Miss Verena?” Or this morning, when he wanted to go to the basement and play the various musical instruments Adrian has relegated there: “I have many instruments in the basement, like a concert.”

Other comparisons—not so natural. Martin likes to drink a kombucha beverage with chia seeds. This morning I asked what he wanted to drink with his (neverending) breakfast. He responded, “I wanted kombucha with a group of seeds in it. Like a singing group.” Chia seeds like a singing group? Does he really think that, or is he experimenting with uses for the word “group”?

I suppose that, as his language continues to improve, Martin will speak more like other people. I’m trying to write down these little Martin-isms now, while we’ve still got them. They represent one more special mile in the recovery marathon.


Breakfast is challenging. Morning is challenging.

I know, I know: Most families with young children probably find it difficult to get them fed, groomed, and out to the school bus on time. Breakfast with Martin presents certain additional factors:

1. Martin doesn’t like his breakfast food options. I’ve given him as many choices as I can, subject to the parameters of what fits his current diet and what I can manage in a smaller window of time. His enthusiasm peaks at “meh.” Certainly nothing gets put in his mouth voluntarily.

2. Martin also needs to take supplements and medications and homeopathic drops (lots of them), which I assemble and administer during the meal, dividing my attention.

3. Mornings, for whatever reason, are Martin’s most distracted time. Often, despite the plate sitting in front of him, he seems to forget even that he’s supposed to be eating. I lob hints and suggestions. (“What’s 9+3, you ask? Try some turkey bacon and we can talk about it.” “Hey Martin, guess what you can use that fork for?”) Occasionally I resort to spooning the food into his mouth. Okay, fine. Often I resort to spooning the food into his mouth.

In order to be ready for the school bus on time, Martin needs to leave the breakfast table and go to the bathroom by 7:25 a.m. He knows this. While asking questions, drawing pictures, and dropping food on his school clothes instead of eating, he counts down the minutes until 7:25. The instant the clock turns, he springs from his chair, remaining food be damned.

If by some miracle Martin finishes his breakfast—or if he manages to bargain me down to some reduced food portion that he’s willing to cram into his mouth in order to escape the table—before 7:25, he’s allowed to go into the family room and play for whatever minutes remain.

One recent morning Martin was drinking a smoothie: coconut kefir, avocado, kiwi, papaya seeds, and strawberries. By 7:18 (the dance is precise) we had finished morning supplements. I headed to the bedrooms for my three minutes of “me time” (pull on jeans, straighten hair, add enough layers to hide pajama top so I can escort him to the school bus). Martin remained at the table, his smoothie glass still half-full.

Typically I would return to the kitchen at 7:21 and devote four minutes to cajoling him to finish breakfast. That morning, however, I returned to the kitchen to find the glass, empty, in the sink waiting to be washed.

“Martin!” I exclaimed. “What happened?”

“I finished my smoothie. I’m playing,” Martin responded from the family room.

I’m no Pollyanna. Quickly I scanned the sink and garbage for evidence that Martin had dumped the smoothie. Nothing. The kid was for real. He’d actually decided just to finish breakfast and go play. I swooned.

And lest you think that’s the only victory of recent days, allow me to say that, this very day, February 21, I asked Martin to get dressed “within five minutes.” After some debate about where he would agree to get dressed—he insisted on standing on my and Adrian’s bed, which apparently offers the best view of our digital clock—Martin completed the task in three minutes flat. Except for his socks. Socks are hard. Also, his underwear and shirt were on backwards, which I considered an improvement, because yesterday his pants were on backwards.

Victories are everywhere.

Martin, assisted by his partner-in-crime, George the Cat, plays in our family room.

Martin, assisted by his partner-in-crime, George the Cat, plays in our family room.