Negotiation 101 *warning: contains yucky stuff*

The Negotiator

My last post was full of disregard for unproven therapies.  I didn't mention that we've been following a gluten free/dairy free diet for about 3 years.  We don't buy into the theories, but Ben is definitely sensitive to something.

The past two weeks have seen multiple birthday parties, a ski trip, a cupcake making event, and two Easter egg hunts - all with treats that were off the diet.  Being too lazy a parent to provide GFCF alternatives, I told Ben's caregivers to go ahead and let him have the same treats as the other kids.  This led to some really icky results.

Potty training has actually been going very well, but we still use a "pull-up" occasionally - especially when he's been off the diet.  I'll spare you the gory details, but I was in the midst of changing one of these super-disgusting gluten/dairy-fueled poo containment units when Ben demonstrated his aptitude for negotiation.

I looked up from the train wreck in Ben's pants to see him with his finger in his mouth.

Me, panicky:               "Ben!  Are you eating something?!"
Ben, enthusiastically:  "I'm eating a booger!"
Me, authoritatively:    "Don't eat boogers!"
Ben, liltingly:             "I'm eating booooogers!"
Me, exasperated:        "DON'T EAT BOOGERS!"

This went on for a while, until Ben dropped the hammer:

Me, pleading:           "please don't eat boogers."
Ben, with finality:      "Give me candy."

Happy Easter!

Groundhog day 2

Let's see now, where was I?  I went to that meeting, and wanted to write about it.  Got distracted, but I will now sit down to write about "finding your voice".

At the previously mentioned public meeting, I got the opportunity to say who I was and make some comments.  I've never been good at speaking in public, and I get verklempt when I say, "My son Benjamin has autism."

I google Leeann Whiffen.  It turns out she wrote a book that describes how she and her family helped get her son past an autism diagnosis.

Errrrkkkk!

Distraction #2:  I immediately grab her book from the library and read it.  It describes how she put together an ABA program for her son that was 4 hours per day and included multiple therapists.  She took a big gamble, seeing as it was extremely expensive and took tons of energy, but it worked!  It also describes the intense feelings experienced by parents of autistic kids, the lack of sleep, the self-doubt...you know -- all that stuff.

Caveat:  I'm jealous as heck that she got her child ABA so early.


This woman didn't just find a program... she put her own program together -- that's being a supermom.

We went through the system with Ben -- we did the state's early intervention program (she did that too, somewhat different in her county).  We had occasional visits with occupational therapists, speech therapists, and developmental specialists.  These were never more than an hour or so at a time, and were at most once per week.  We also had a "structured playgroup" and "kindermusic".

Our doctor also got us into the clinic for Children with Special Health Care Needs.  We saw a speech pathologist and a neurologist and an awesome OT whom I've run into a couple of times since then.   He's offered to write a guest post here, so maybe you'll here from him soon.  Ben's hearing was tested several times.  He's got some weird mid-range hearing loss, but nothing that should affect him more than mildly.

I brought ABA up to a psychologist at this clinic, but he told me that Ben's good eye contact meant that he didn't need it.  He said ABA was for kids deeper into the spectrum.  On his recommendation, we spent a year in the public special ed preschool.  They were nice, but Ben didn't make that much progress, bless their hearts.  I'd say that in the first 2 months of ABA, he made more progress than in the entire year before.

Leeann also tried lots of other stuff -- GFCF diet, lots of supplements, and even chelation.  We've been GFCF for a couple of years now, but I don't know that it helps autism.  We think Ben probably has a food sensitivity that we avoid when we're GFCF.  It's one of the next things I want to figure out for him, because it would be nice to expand the family's diet a bit.

Supplements?  Well, both my kids get omega-3's and a multivitamin and when they're sickly, they get vitamin C.  Ben also gets some extra calcium because it's easy to get a deficiency on the GFCF.  Leeann went quite a bit further, following the advice of Dr. Bryan Jepsoson and  attending DAN conferences.

Chelation therapy?  That's going just a little too far for me. 

Leeann also devotes a goodly number of words to immunizations and hints that her son's autism is related to that.  I had a feeling that would be the case when I saw Jenny McCarthy quoted inside the front cover.  Here's how I feel about that.

I'm curious what Leeann's stance is on immunizations and GFCF and so on now that she's a couple of years past an autism diagnosis.  I will say that I'm impressed as heck at this woman.  She perceived a threat to her child and at great risk to herself and her family, she took a shotgun to it.  One or more pieces of that buckshot did the job and her kid can make his way in society.

To top it off, she hasn't stopped... she's out there advocating for kids.  She and other amazing moms parents that I've met in the past couple of years.  Thank you, Leeann Whiffen.  Thank you, amazing parents.

So much is unknown about autism and it's so complex that I have this nagging feeling that 100 years from now, people will look back and say something like, "little did they know, autism was two separate conditions, one caused by air pollution, Motrin, and a genetic mutation common to fathers over age 35, and another caused by vinyl floors, McDonald's biscuits, and the common cold."  My head in a jar will occasionally shout out "Damn you, McDonald's!  Why did your biscuits have to be so tasty!"

We live in an age where information shoots out of a fire-hose.  It's not just water that comes out of it,  there's snake oil and ... darn it, I don't know where to take that metaphor.  Anyway, if you have a kid with autism, evidence-based is the way to go.  Intensive ABA therapy is currently the only thing that seems to help.

Next up:  Distraction #3.  You may do your homework by googling "what's wrong with autism speaks".  Also download the reddit app for your smartphone.

perfect pizza

We like pizza.  Back in the day, on Fridays, I would make pizza dough from scratch and we would construct our own pizzas.  My older boy liked Pizza Hut thin crust pizza (me too), so my goal was to make one that he liked even better.  I did my internet research and found out how to do it.  I learned to pre-cook my crust (and my toppings too).  I rolled out my dough and poked holes in it.  I got a pizza stone as a gift from my lovely wife, which helped a lot.  Other than that, the thing that made the most difference was high gluten flour.  I had it down!  My oldest proclaimed that he'd rather eat my pizza than Pizza Hut (which is not precisely the same as saying that mine tasted better, but I'll take it).

And that's when it happened...I took the boys to visit my family, back in Tennessee for the holidays.  After a couple of days, my sister let me know that one of her acquaintances had cured her child of autism by switching to a gluten free diet.  Not wanting to appear a slacker in front of my mom, I said "OK, let's do it!.  What's for dinner?"  My mom looked a little panicky, but stepped up to the challenge.  For the rest of Christmas, we had more fruits and vegetables than I had for my entire youth.

A little more research told me that it was not just gluten free, but GFCF...gluten free/casein free that we needed to be. Casein is a protein found in milk, so no dairy.  No cheese grits, no corn bread, no .... pizza.  I don't really grok the theory about why we're supposed to be GFCF, but I will say that his digestive tract seems to be happier when we don't have those things.  When there are occasional issues, we can almost always find something that we can blame it on (Twizzlers have wheat flour in them!).

We've been doing this for almost 2 years now.  Our family eats lots of rice and beans and corn.  Asian and Indian cuisine works pretty well.  There are some pretty good pasta substitutes, using rice or quinoa.

Does it work?  I don't know.  What we really need to do is buckle down and do an elimination diet.  That's hard because he wants to eat what other people are eating, which means either a fight every night, or we all get fascist on our food for a few months.  How about it?  Any of you done an elimination diet?  Any tips for me?

Here's a recipe for ya.  I pulled it off the web and have made it 4 or 5 times, with good success unless I use light coconut milk.

Ingredients

•   2 tablespoons vegetable oil
•   1 medium onion, coarsely chopped
•   2 garlic cloves, minced
•   1 tablespoon minced fresh ginger
•   1 1/2 pounds lean ground lamb
•   1 1/2 tablespoons curry powder
•   1 medium sweet potato (1/2 pound), peeled and cut into 1/2-inch dice
•   One 14-ounce can unsweetened coconut milk, stirred
•   1 cup chicken stock or low-sodium broth
•   Salt and freshly ground pepper
•   1/2 cup frozen baby peas, thawed
•   1/3 cup coarsely chopped cilantro
•   Hot sauce, for serving

Directions

  In a large, deep skillet, heat the oil until shimmering. Add the onion, garlic and ginger and cook over moderately high heat until barely softened, about 4 minutes. Add the lamb and cook over moderately high heat, breaking it up with a wooden spoon, until it starts to brown, about 10 minutes. Add the curry powder and sweet potato and cook for 2 minutes. Add the coconut milk and stock and season with salt and pepper. Cover partially and simmer over moderate heat until the sweet potato is tender, about 15 minutes. Add the peas and cook until heated through. Stir in the cilantro and serve with hot sauce.

Serve with warm naan or white rice.

p.s.  here's anonymous's link from the comments:  Gluten-Free on a Shoestring: 125 Easy Recipes for Eating Well on the Cheap