“Green is the prime color of the world, and that from which its loveliness arises.” — Pedro Calderon de la Barca

Sorry to be light on posting the last few days. We’ve all been feeling under it this week. I’m also working on a few improvements to the blog, which I’ll hopefully get done this weekend along with some posting.

In the meantime, here’s another achievement to celebrate! Even though J-Man has felt bad all week, had all sorts of weird sleep patterns, and has decided that this would be a nice time to assume the role of terrible-almost-threes-tantrum-monster, we did have a big positive. He decided to color!!

To make a long back story short, he has never enjoyed using crayons because of his sensory issues and fine motor control problems. It seems like he can’t figure out how to use the crayon, it somehow feels icky in his hand, or both. He tends to hold slender objects (like spoons, crayons, pens, etc.) at the very end with as little finger skin as he can get away with. (see first picture below) This obviously makes it very hard for him to self-feed from a spoon.

I had him ’sign’ a birthday card for my sister the other day with a crayon. Usually if we get a couple of dots and a random line, we’re happy. Even that takes a lot of effort usually. This time, he kept running the crayon back and forth and I had to take it from him so she could still read the card.

Night before last, he took one of his bathtub crayons (easy clean-up!) - very specifically the green one - and colored the edge of the tub for a good ten minutes. He has NEVER done this. He even held it some of the time in a ‘normal’ writing grasp (see second picture). Woo hoo!

After a couple of years of occupational therapy, we have coloring! On the one hand, I guess that could be depressing. But every victory is hard fought, and you gladly take every one of them regardless of cost. As you can tell in the last picture, he’s so proud of himself. That makes EVERYTHING worth it.

Some days, the best you can aim for is to make it to bedtime and hope that nobody pees on the carpet, and even that is negotiable. I’ve been so dead tired lately that even typing this is a real effort. I’ve got all the classic signs of being way over-stressed. And I think I just stared blankly at the screen for five minutes before writing this sentence.

Some have encouraged me to write down a few good things J-Man has accomplished even in the midst of the really bad days. Since I wouldn’t call him having digestive issues and whining constantly for the last several days worth celebrating, I had to try a bit harder. I just feel like wallowing in self-pity, and the sage advice I received once that “when life gives you lemons, remember to lead your targets and follow through with your throws” seems a lot more appropriate. Regardless of your strategy, whatever works is good enough.

In OT today, I watched him actually ride a plastic rocking horse for the first time. He pushed back and forth a few times and leaned along with it some to build up a little momentum, too. For him to coordinate all of the motor functions needed to rock that thing on the floor by himself was quite an achievement. He even sat on one of those pushable riding toys and pushed it around in reverse using his feet. He hates those things, so again, this was a real achievement. It was only a few minutes of the day (though he did well in OT overall today too) but it has gotten me through most of it.

It’s not really despair or hopelessness by any stretch. I think it’s just sheer exhaustion with the gravity of knowing that we have a couple of very busy, very stressful months to go before it lets up much at all. I look at all the to-do lists for preparing for his IEP, all the people we need to contact, all the stuff we need to write up, all the day-to-day stuff we need to do, all the projects on my work lists, all the stuff that needs fixing or cleaning around the house, the weed-infested yard in front of our house, some green junk growing on our deck, all the lint stuck in the dryer exhaust which vents out from the roof, and God knows what else, and in the moment it all feels like too much. I notice a loose toilet paper roll holder and feel like sobbing. That’s just how it’s been.

It’s like getting to mile 17 of a marathon and realizing you just hit the wall, except you can’t just turn right, get in the car, and go home. Deciding not to run isn’t an option. In our area of the world, people often call it being ‘bone-tired’. That sounds about right.

If you go looking for it, some nugget of something will pop up and hopefully nudge you a while longer. I forget who it was, but someone once said something to the effect of, “We can only see in the dark with our headlights a few feet in front of us, but we can make the whole trip that way.” From some recess of my brain, that came up and bumped me along a little bit. I guess getting through the day is sometimes just about driving a couple of feet at a time.

Not long after, I read this quote in a book about typography of all things (it was an example in the book - no idea who said it): “Today’s mighty oak is just yesterday’s nut that held its ground.”

I guess sometimes feeling like a nut isn’t so bad. Good thing. I’d still prefer some other way.

Yesterday and today, J-man wore what we call “big boy shoes.” That means shoes with a sole that is NOT simply a piece of leather. Yes, shoes with rubber soles. Shoes that are made for running around outside. Shoes like big boys wear!

The first time, the OT put them on him. I understand it involved essentially sitting with him on the floor, and holding one of his legs down with her leg, while shoving the other foot into a shoe. (I’m imagining some sort of professional wrestling pretzel-type move.) I understand it wasn’t a pleasant experience, and I expected that to be the case when we tried it later. However, the Wonder Pets (best show ever) was on, and it was pretty darn simple. Today, on the other hand, the first time I tried it I ended up throwing one of the shoes across the rug in frustration! Then, something like 10 minutes later, I tried it again, and Voila! Easy peasy. Who knows what tomorrow will bring? (Only the Shadow knows…)

Also, the J-man slept for 13 straight hours last night. I think that has happened once before in his entire life, and I think he was recovering from an illness then. Since he hadn’t napped in forever, I guess last night was a catch-up night. I was totally for it.

Tomorrow we have Speech Therapy, and we have the appointment at the audiologist. The appointment is right when we normally put the J-man down for his nap. Good times. Good times.

(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.

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.

Because of some potent fertility drug they pump through the water fountains at the therapy office, our occupational therapist (OT, for the uninitiated) recently went on maternity leave. We had our first session with our new OT this week and J-Man did extraordinarily well.

For the past few months, the OT sessions have been ‘home visits’ (therapy in your ‘natural environment’ - a.k.a. home where all the toys are), but we’ll be having sessions at the preschool until a home visit slot opens up with her. We shoved a session into the crazy schedule so he wouldn’t have to wait all the way until the 17th before we get into the new routine.

There was so much stuff in that kinda small room that I thought it would unnerve him, but he had a really good time. It helped that she didn’t make him do any eating work. It was motion stuff (vestibular and proprioceptive for those of you who know what that’s all about), which he’s been doing well with of late.

I was really impressed by how well he took to her and all the good eye contact he made with her. He’s doing pretty well with new people - and he loves him the ladies - which is a relief for us (the eye contact and comfort level more than the lady-lovin’). She read him well - a skill we always appreciate - and seemed to intuit well when to push him and when not to.

Hopefully she drinks bottled water. The new and expectant demographic there is impressive!