Posts from — March 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.

(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.

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.

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?

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.

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!

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 extra pirates. The plastic eggs looked pretty while flying off the couch.

Daddy looked sad. He said he asked the Easter Bunny for a Little People Noah’s Ark with the extra Pirate Pack instead.

Arrrrrrrrr!!! We’re being attacked by a freakin’ giant monkey!

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 now, we aren’t being as kind and gentle toward each other. We’re sniping and being sarcastic during the day, although at night when we lie in bed and talk, we are very sensitive to the other’s needs.

As I have mentioned, I read a lot. I’m re-reading old favorites – books that I know will comfort me. I know where the hard parts of the stories are, and I can easily skip to the good parts. How I wish that life could be like that sometimes. I’m sure everyone does.

Right now, I’m re-reading Betsy’s Wedding* and have gotten to the place where Betsy is writing her Rules for Married Life. “Always, always, be gentle and loving. No matter if you’re tired or feeling cross.” That’s something we have to remember right now.

It’s very easy to let ourselves take out our anger and frustration on each other, and I’ve decided I will not let that happen.

(*Betsy’s Wedding is the final book in the Betsy-Tacy series by Maud Hart Lovelace. They are books describing a girl growing up in an idealized early 1900s Minnesota. They are wonderful escapism if you like “happily ever after” types of books.)

This pretty much sums it up.

“I’d piss on a spark plug if I thought it’d do any good!” - General Beringer from the movie War Games.

While I’m trying not to act like the above title (10 points if you know where it’s from. 20 if you sing it!), it’s a little glum around the ol’ Flashlight house these days. We’re still trying to work our way through the stages of grief everyone talks about – and I’m stuck in the anger/despair part.

Really, why does this have to be so hard? I, like all parents, want my child to have an easier life than I have had. I want him to have the good things from my life: to grow up loving to learn, go to college because it’s just what we do, find a wonderful partner like I have, and have beautiful children that I can spoil someday. It reminds me of that line from Steel Magnolias where Julia Roberts’s character says, “I want to sit on the front porch, covered in grandchildren, and say ‘No,’ and ‘Stop that.’” I want him to skip the bad things…

Instead, his life will be immeasurably harder than mine. He will have to work harder at EVERYTHING than I had to. Everything (ok, except peeing while standing up, which I still can’t do unless in the shower… it’s OK, I’m the one who cleans the bathroom).

This changes our lives for the long term. It changes our plans for ourselves (second baby? Moving to the mountains someday?) and our plans for him (doctor? Lawyer? POTUS!?).

Interestingly enough, it doesn’t change our lives for the short term. J-man will still have the same therapies he had before, since he was already in developmental, occupational, and speech therapies. He will still attend the special preschool. He will still pull us to the back door to go out and swing every day. He will still continue to delight us with his smiles and giggles and sense of mischief. He will still be the wonderful boy we know. He will not know the difference that 3 letters can make.

We will though.

In its own way, it seems fitting that today is Good Friday. There are symbols and themes that go along with this day that speak to how I feel about everything going on with us.

People either skip over Good Friday on the way to Easter or don’t bother to contemplate what that Friday was really like before anyone ever knew there would be an Easter.

It’s not about what will happen but what has happened and what that feels like right now.

Good Friday is about believing that things have turned out in the worst way you could imagine. It’s about once having all of this hope and then feeling like everything fell apart. It’s about being told it would happen and not believing it until you saw it with your own eyes. It’s about people’s entire view of the world and their role in it one day abruptly ending, left instead to wander aimlessly and reinvent your life. It’s about believing you were promised one thing and then having it taken from you. It’s about feeling you’re going to be shunned from this day on by society. It’s about believing from now on, you’re on your own.

It’s about the story not ending like it’s supposed to.

I think most of theology can be summed up in one word - ‘but’. I’m a writer, so I tend to see things through the lens of language. Today, I see God as the Great Conjunction.

I once believed our lives would follow a certain path, but instead a different one lies before us.

On that first Good Friday, everything fell apart, but the sun came up that Saturday, and then that Sunday, and then that Monday, and every day since.

One of the most powerful forms of speech in the Bible (depending on the version you read) goes like this: “You have heard it said that… but I say unto you…” Things will be transformed, but we’re not there yet. I’m still carrying around a lot of anger.

Good Friday is about being in the moment before the ‘but’, long before there is any hope that it will come. I may be stuck on Friday for a while.

I completely broke down Wednesday when I was giving J-Man a hug and said “I-IIIIIII… Looooooooooove” and then he gave me a kiss. I barely got the “you” out before I choked on tears.

I believe J-Man will be a living example of how to put things back together again. As frustrated as he gets, I know his stubborn, determined streak. If there is a way, he will find it. Right now I’m having a hard time believing in much, but I know I believe in him. And for now, that is enough.

If he could talk, I could see him saying, “You may say that there will be things I can’t do, but I’ll have something else to say about that.”

We have a diagnosis - ASD.

As our readers know, we had Jonas’s autism evaluation yesterday and the doctor didn’t even need to score the evaluation to tell us that Jonas has an autism spectrum disorder (ASD).

That spectrum includes a wide and diverse range of things so the more exact diagnosis won’t be clear until we get the full write-up back in three weeks. Given the discussion at the end of our appointment, it appears that we’re looking at something significant. Either way, the wait is pretty much over.

I want to believe it’s inaccurate, but the rational part of me knows it’s correct. I know I’ve been in denial for a while. I didn’t want to believe it, and I still don’t. Jonas didn’t much care for the evaluation, but I thought it was still a fair snapshot of where he is right now. I have enough confidence in the doctor to believe his assessment is medically valid.

We’re not really in the right mental place to talk about this yet. At one level, nothing is any different than Tuesday. He’s still the same, wonderful, beautiful, life-filled, wondrous boy he’s always been.

The reality is that the road ahead looks a lot more uncertain. Yesterday was a very bad day. I went to Barnes and Noble this morning to do what I do to cope with things like this - I bought books about autism. I sat at the reading tables and looked through them. It was all I could do to not start crying again. And I do mean again.

That said, I know we will be fine. We just need to process this for a little while.

To all those who have supported us and continue to do so, we love you.

That’s all for now. More to come.

I had a rough night last night. It was one of those cumulative sort of episodes where you stockpile stress and worry and get to the point where you have to empty some of what’s in that bucket to get to the next day. I’m sure that means I need to focus on better ways to deal with that.

Part of this is not paying enough attention to all the positives that happen every day. So before our big appointment today, let me tell you one.

Yesterday, he ate a mouthful of a peanut butter and jelly sandwich.

This may sound utterly trivial to a lot of parents, but this is the equivalent of me orbiting the earth without a spaceship. There are a number of textures in a PB&J that normally make him gag (the literal, retching kind). He didn’t look terribly excited by what he ate, but he chewed it and swallowed it - no taking it out of his mouth and handing it back to us in a panic.

He earns every triumph, and every one is cause for celebration. I needed to be reminded of that yesterday.

J-Man’s autism evaluation is tomorrow morning. My brain still hurts from the preliminary conversation we had today with the county about his transition from Early Intervention to preschool in six months. I don’t even know where to start with the fire hose of information that entails.

In any case, time to switch gears to our big day tomorrow. What we’re hoping for tomorrow is an evaluation that accurately describes where he is in his life right now so he can get whatever he needs to be the best Little Man he can be. We have confidence in the evaluator; our hope is just that he feels comfortable enough to be himself during the evaluation. He really struggled with the Early Intervention evaluations, but those were some time back and with evaluators we had less confidence in. Hopefully this one will be easier for him.

He gets frustrated with himself pretty easily now, though, and watching your child struggle through that is one of the hardest emotions a parent can bear. If you’re going through this, you already know what I mean. And you also know how much you or I would do if we could just carry some our children’s struggles for them, even for a little while.

I’ve said this to our various evaluators and teams before, and I think it’s worth repeating here. When we get the results of an evaluation, we don’t want to think we know; we want to know we know. I know that’s a lot to ask at this point, but it’s the standard I’ve set for us to work toward.

I know the reality is that there’s a lot of educated guessing at this stage. It’s the professionals who admit that and make their best call from that who I respect. It’s the ones that swoop in for an hour and pronounce judgments who I don’t. We have plenty of reason to believe that tomorrow we’ll be getting the best possible evaluation we can get at this time.

In three weeks, we’ll get the results of tomorrow’s session. That’ll be a long wait. It’ll still be a relief to get to noon tomorrow and have this behind us. We’ll cross that next bridge when we get there.

One of the things J-Man’s therapists have noted is how good he has been at figuring out on his own some techniques that will help him deal with certain ’sensory situations’. This is apparently a pretty advanced skill for someone in his situation.

Part of the problem is that he has a very hard time communicating what’s bothering him, and while we have the standard assortment of ’sensory organizing’ things we do, it’s a lot of trial and error since we often can do nothing more than guess.

What’s particularly interesting is that it’s common for him to use some of the techniques he’s invented for a while, and then just drop them, I suppose when they no longer do much for him.

Here are some of the things he’s tried over time.

• Rubbing his head on the floor - either just laying there and doing it or by crawling and rubbing his head that way
• Pushing our wooden kitchen chairs everywhere
• Teeth grinding
• Chewing his shirt until it’s soaked through and then pretty much not stopping until we stop him
• Kicking his high chair rhythmically, which basically serves to vibrate the chair
• Pushing on doors
• Licking salt
• Spinning in circles

The consistent theme here is that he generally seeks strong input. More on why this works in a later issue.

And the stuff he’d seek out us to do with him.

• Lie flat on the floor to get “smushed” - essentially flat palms on his back and pushing down with the force roughly that of a strong hug
• Get one of us to take him outside and swing
• Get one of us to lift him over our heads repeatedly
• Ask (in his own way) for ‘horsie’ - basically getting me to bounce him around singing the theme song to “Bonanza”
• Get us to tickle him

When he was a baby, he either had to be nursed, swaddled, held, or driven around in a car to go to sleep. In hindsight, this isn’t any surprise since that heavy pressure around him is very soothing to him even now. At the time, it regularly sucked, made us mental from exhaustion, pinched a couple of back nerves, and did a fair amount of damage to the environment. That’s how it goes sometimes.

An intriguing path we’ll likely head down in the near future is looking at what role music and sound could play in his therapy. We do it informally now since he loves playing on his keyboard, listening to about any kind of music, having us sing to him, and so on. That gets us through a lot of therapy sessions. Singing coupled with all the nursing, swaddling, holding, and driving is what got us through those 16 months of not sleeping through the night.

There are more formal therapies around this that sound encouraging. More on that in a future issue.

More on sensory stuff in a future installment, too. Speaking of sleep, I need some.