March 2008

Why We’re Not GF/CF

by Mary on March 31, 2008

Already we have had people suggesting that J-man go on a GFCF diet (that’s gluten-free, casein-free for those who don’t know). Well, here’s the thing… if we started such a diet:

  1. J-man would have no protein, because the only protein he DOES eat is chicken nuggets twice a day (hence, breading) and his daily cheese toast at breakfast. Gluten? Check. Casein? Check, check.
  2. The few vegetables he eats (which are actually soups from the Earth’s Best organic line of baby food) contain both wheat and dairy.
  3. I would also have to go completely GFCF as well, since J-man is still nursing. We’ve done dairy-free before (and it’s way harder than you would think to find food that is truly dairy-free). We’ve done soy-free, dairy-free, which makes it even harder. Rice milk anyone? (Only drinkable if it’s extremely cold, and even then it still smells like rice. Insert the blech emoticon here if you wish.)

We did all that dairy/soy-free for 3 months trying to figure out if J-man had some sort of dairy/soy sensitivity, back when the only thing we worried about was his eating habits and reflux. Guess what? Neither helped. They didn’t help his reflux, and didn’t change his behavior.

So, unless someone can find me a chicken nugget without gluten or dairy that also tastes and feels exactly like Tyson… we’re going to go forward without this one. Unless we can find bread that tastes and feels exactly like Nature’s Own Whole Wheat Bread, and cheese that tastes and feels exactly like premium American cheese (NOT the “cheese food,” people, the cheese), well, we’re stuck.

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The Information Fire Hose

by Tim on March 29, 2008

(Buckle in. This is a long one.)

One thing we’ve already figured out is that once you get an autism diagnosis, whatever the secret code is for the Autism Parents Underground Society gets embedded in you like the security tags they use to keep you from stealing stuff from the store. The big positive with that? You start getting helpful information from people who have been down the road you’re on, instead of just getting information about autism from TV, well-meaning friends and family who also got their information from TV, or Tom Cruise.

Our driving principle: Do whatever it takes for J-Man to realize his full potential and be the best little man he can be, but do so armed with all the possible knowledge and wisdom and feedback we can stuff into our brains. This may mean that he ‘loses his diagnosis’ someday, or it may not. Whatever that will look like eventually, we want to help him discover all of his gifts and talents and loves and then express them as far and wide as he can. This means we have a lot of work to do, and there’s no shortcut to it.

You quickly learn that there are a lot of debates in the ‘autism world’ that remind me of philosophical or religious debates where people argue endlessly and stop talking to people who don’t agree with them. It’s like watching another form of religious fundamentalism.

A few people I’ve met are getting more invested in movements and doctrine than their own child. I understand the emotional investment parents have in their children’s improvements – and thank God for it – but right now I find all of this debating a distraction. If you want to argue cures vs. neurodiversity, that’s fine. Just do it somewhere else for right now. None of that means jack to me when my son is flapping his arms like mad in the back seat of the car. Luckily, the number of people I’ve personally come across in this category are in the minority.

We’ve been reading and researching for two years about feeding issues, sensory integration disorder (or sensory processing disorder depending on who’s talking to you), physical therapy, reflux, speech delays, apraxia, and every freakin’ therapy you can think of around them. This has been great practice for discerning what therapies and ‘cures’ for autism have some potential for success and which are pure excrement. The latter looks to be winning in a rout at the moment, but that’s another story.

Thankfully, the anecdotal suggestions from strangers (“We know a parent who had their kid piss into a strong, North wind every morning for a month and got him cured!”) has been pretty minimal so far. We’ve developed pretty good BS detectors, which is one of the most important skills for a special needs parent to have.

I also classify certain therapies under the heading of ‘well, it couldn’t hurt’, so I’ll try some of them even if some seem a little odd. I’ll give serious consideration to many diets, vitamins, or supplements, even though we’ll do a lot of research into them before we dare try them with J-Man. This will likely mean we’ll dismiss ones that seem invasive, dubious, completely unproven and untested, and anything else suspicious.

I’m skeptical of many vitamins and supplements because, with all of my own ‘issues’, supplements have at best made marginal, imperceptible, or no improvements for me. None have caused me any real harm as far as I can tell, so there was no reason not to try many of them. A couple made me sick to my stomach for a couple of days, but that was about it.

There’s a whole lot of stuff in the Whole Foods home chemistry aisle that appears to lack everything but a salesman on a soapbox. You can’t easily tell what really could be helpful and what would be more cheaply achieved by gnawing on an Amazon.com box. Again, you gotta research. There are no shortcuts.

There’s a lot we don’t know about how supplements work, and some of the ones that involve some fringe-sounding stuff may cause problems for little people with developing brains. If they’ve been tested for all of about a day and a half on ten kids, you have absolutely no idea what good it could do, not to mention the possible long-term harm. You have to read, talk to people you trust, read some more, and then decide.

To me, one of the best ways to do your first pass at weeding out options is to look at two pieces of information about these or any other therapies: 1) Has it been tested on a sample size of more than three neighbors’ kids, and 2) has it been around for longer than a five minutes. Not to be overlooked: Does the person advocating it have a financial stake in it? That should eliminate about 3/4 of the possible therapies right there.

Notice I never said, look for studies where the scientists have medical degrees and lots of acronyms after their names. There may be all sorts of correlations between therapies and improvements in autistic kids (we’ll do ‘correlation vs. causation’ some other day), but degrees and acronyms isn’t one of them. I may not know a whole lot yet about therapies specifically for autism, but I’ve been researching everything else for two years and much wisdom and common sense carries over. The biggest difference is that our emotional investment in improvement is even higher than before, and that’s saying a lot.

Just to be clear, I’m not saying none of them work; I think it’s safe to say that some of them do help at least some kids. I’m saying that I begin with healthy skepticism and then work toward being convinced or unconvinced. I’m not sticking any old thing into my kid’s body unless I have some sound evidence that it might help and it won’t hurt. There’s at least a “first do no harm” principle here.

Some therapies really intrigue me and seem worth a try. Music and auditory therapies might work well for J-Man because he’s such a musical kid. I couldn’t carry a tune in a bucket, but my iPod is like my portable therapy device, so I won’t discount the value of it even if I have no clue how it might work for him.

His OT is trained in one kind of auditory therapy so I’m interested in giving it a try. Getting him to wear the headphones might be the hardest part. Again, this falls under ‘it can’t hurt’. Currently, insurance and Early Intervention are financially supporting much of this part of the effort so now is as good a time as ever to try something like that.

It’s that and we’ve learned that we can truly trust his therapists and preschool teachers because they are smart, caring, and always have J-Man’s best interests in mind. If they tell us something is worth trying, we’ll listen. The best thing you can do is develop a network of professionals, family, and friends whose advice you trust and know is sound. They will help you separate the wheat from the chaff better than just about anything.

All this is to say, we’ve learned a lot over the past two years about how to sort out much of the snake oil, ‘breakthrough cures’, and outright loony crap from the stuff that has some reasonable, scientifically-based chance of working. I’ll even go as far as to say that anything that is sold as easy will be struck from my list of things to try. I’ve learned in life that there are rarely any shortcuts.

I wish there was an autism Santa Claus, but I know better. It’s depressing, but I know I have to make my peace with this.

For someone who has been unable to sleep for almost two weeks, feels emotionally spent, and who thinks beer and ice cream sounds like a good dinner tonight, I feel oddly lucid and confident about our ability to differentiate between hope, helpfulness, histrionics, and horseshit. And the fact that I can string four h-words together right now just astounded me.

I know I haven’t talked about education, behavioral work, and the other therapies in the standard repertoire. I feel confident in the approaches we’re already taking and feel like we’re getting great advice on what else to try. I’m less worried about this. Perhaps I’m approaching this by weeding out all the junk first so we can see what our best options are. Distractions are my nemesis, and God knows there are a lot of them here.

And in case this point wasn’t clear – there are no shortcuts.

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Pillow Fights of the Third Kind

by Tim on March 26, 2008

Ed. I don’t know what the First and Second Kinds of pillow fights actually are, but I bet they’re not as good as the Third.

In a sign of just how exhausted I am, the night before last, I woke up in the middle of the night with a survival-life-or-death kind of instinct that I REALLY needed to yank the pillow out from under Mary’s head and put it back again very quickly – think yanking a tablecloth out from under a bunch of dishes.

I have no earthly idea why I felt like I had to do this or what literally dreamed-up reason was behind it. Apparently, according to Mary, I did it with speed and agility not normally seen in someone who is 99.99% in deep REM sleep.

Mary – whose what-the-hell reflex augmented the sharpness of her memory about this whole episode – says I yanked the pillow out and put it back so fast that her head didn’t have time to fall back down again before I’d stuffed it back under her. I couldn’t do this awake if I tried.

The scary thing is, I actually remember doing it, and then trying to explain to Mary what in the hell I was thinking. I’m sure I made up an eloquent and well-reasoned argument for it, but the obvious truth is, I have no freakin’ idea.

Other than I’m so tired right now that I can doze off while walking.

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The sign for ‘yes’

by Tim on March 26, 2008

J-Man uses very few words, and most of those are his version of them. One on-target area of his development for a two-year-old is the ability to say ‘no’. Generally, it comes out ‘nah-nah’, but you don’t need a speech therapist to figure that one out. He’ll occasionally throw in some head-shaking for good measure.

Admittedly, he does tend to say it after we tell him to stop doing something he really wants to do – like trying to erase programs off of our DVR – and often includes some devious grinning to let us know that his inner-stinker is alive and well.

‘Yes’ involves sounds he currently can’t make. He doesn’t ever nod his head either, and sign language is pretty much on par with Sanskrit for him at this point. But he’s learned to compensate with various other forms of basic communication, at least to get across the most essential stuff. This is particularly true for anything he REALLY wants to do, which includes anything outside (spelled O-U-T in all adult conversations in our house) and anything related to Signing Time or Wonder Pets.

This is a new one, though, and it gets me every time.

Me: Do you want to go out in the stroller and walk with me?

J: *kiss*

Me: *reflects on how cool it is to be a dad*

So, he responds affirmatively in the most affirming way he knows how. How cool is that?

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Lovely Day

by Mary on March 25, 2008

Today was one of the few days per month (yes, I said MONTH, people… er… person) that I have to go in to the office. It means I have to wear pants (instead of jeans, you weird people who think I work withou… oh, right) and I tend to try to look nicer by straightening out my hair and wearing make-up.

So I had to get up at the ass-crack of dawn instead of just the plumber’s crack that all women who wear low-rise jeans get whenever they sit down. That was harsh.

The rest of the day though? It was lovely.

My team and I all collaborated on several issues, and it was nice to be able to work with people who don’t feel the need to constantly one-up whatever it is that you are saying/doing. We also documented some highs/lows from the past two weeks, which is why I’m throwing around words like “collaborated” and “documented.”

We were all in funny moods today. The best was when we went to lunch together at a Mexican restaurant and M, my coworker, was talking about getting a combo. He then mentioned that he really liked that song. We were all, “What song?” M: “You remember… Combo Number 5.” He was serious.

For the rest of the day, my coworker R couldn’t look at him because if she did, she would start laughing, and then the rest of us would start laughing… and then eventually someone would snort, and that would make us start laughing again.

Also nice? Having toast with butter and honey for dinner.

It was a lovely day.

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Tag Cloud

by Tim on March 25, 2008

Pardon the mess with the tag cloud (on right – scroll down a little). I’m working on adding tags to all the posts, and the cloud looks like crap at the moment. Use the categories on the left to navigate.

Thanks!

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Happy Easter!

March 23, 2008

When the going gets tough, just remind yourself how freakin’ cute your kid is! J-Man’s Easter Report: The Easter Bunny doesn’t bring candy because, well, I won’t eat it. I only eat snacks that are in the tortilla chip food group. I loved my book. I was pretty whatev about the Little People boat and […]

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Life lessons from a book

March 22, 2008

We are a very kind and gentle family towards each other in general. We are polite towards each other – we drop “pleases” and “thank yous” around here like they are nothing. If we disagree, we try to discuss the issue rather than scream at each other (although sometimes the discussions can get heated!). Right […]

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