(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.

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.

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.

It’s been 3+ weeks on the fish oil now. It’s probably still too soon to determine what, if anything, it’s doing. And this week hasn’t been ideal at all for making any judgments. He’s felt like varying degrees of dirt for most of the week, and everything usually takes a step backward during weeks like this.

Here are a couple of things I’ve noticed improving lately, though whether it’s attributable to fish oil or what he would normally be doing is hard to tell.

* Eye contact continues to improve
* He did really well with his new OT, so score one for comfort with strangers
* He’s following some instructions a bit better
* He’s asking for things with ‘more’ on his own without as much prompting
* He goes to his high chair when he’s hungry (or drags the chair around with him) - i.e. the high chair is a good place
* His tantrums, at least in my opinion, have actually been better the last several days, though I didn’t think they were that bad to begin with

Odd mannerisms of the week:

* He REALLY likes Jeopardy
* It’s not unusual for him to refuse to get OUT of his high chair - a problem we’ve never had

We’re just going to write off the downers for the week as due to him feeling ill (a lot more sensory defensiveness, decreased speech) and move on. We’ve cut back on the ‘homework’ this week to let him recuperate. This round of yuck has been short-lived for his usual coughs and colds (which are fairly rare anyway), so that’s a good sign.

Let’s hope next week gets us back on track.

For previous installments:

Day 14
Day 7
Day 1

We see a lot of medical professionals here at Chez Flashlight. Many of them are great. I hereby declare my now former dentist not one of them.

As I was having Thai noodles - yes NOODLES and not even the crunchy kind that go on salads - for lunch, which I later chased with a few corn chips, I suddenly felt something very crunchy that even steel-reinforced Fritos couldn’t achieve. I had no idea what it was until about ten seconds later when I realized my back molar was missing about a quarter of its toothiness.

I’ve had this filling for barely more than six months. Last I checked, they’re supposed to last longer than that…

I cursed the name of my dentist and demanded a hearing before the Court of All Deities One Might Call Out to In a Time of Great Need so that I would have all of my divine smiting needs covered. I’ll never know whether my pleas were heard and smiting properly carried out - unless it shows up on the news - but I think my request that he at least be cursed with endless tobacco-chewing, halitosis patients through all eternity will be granted readily enough.

Perhaps he was upset with me for wondering out loud why someone would root around in someone’s wet, stinky mouth all day regardless of how much they got paid for it. There’s a reason why every modern horror movie has a dentist’s chair in it.

I rank the “Top Medical Specialization Choices I Don’t Understand At All” as:

* Dentists
* Proctologists
* Male Gynecologists

Tonight, as I keep feeling that giant, gaping place where part of my back molar used to be, I’ve realized one important, common trait between those three groups.

They are all ‘orifice doctors’. That’s all I got for you there.

Deep thoughts from a guy with a literal hole in his head.

On the plus side, J-Man is a lot better today. I guess I’m the Yang to his Yin, or however that works.

J-Man has some sort of chest congestion/cough thing going on so we rescheduled the autism evaluation for next week. He’s been dragging around today so we knew there was no way he’d be up to it, especially given how much he loves evaluations in general. [insert sarcasm]

Everybody seems to have bad mojo today. I have felt, as we say around here, “urfy” today and even our Civic is marooned at the dealership tonight to have the wheel bearings replaced.

Unfortunately, it’s the only thing still under warranty…

No, I’m not talking about Tim.

J-man seems to be getting some sort of illness. Please let it NOT be the flu. I want him to be as well as possible for Tuesday’s evaluation. Of course, I should be used to this by now – every evaluation he’s ever had was prefaced by some sort of viral attack!

Coughing and whining. Whining and coughing. I’m not hungry. I’m starving! I need to sleep. I don’t ever want to see the inside of my crib again. Hold me and don’t put me down even when you desperately need to pee. I want to sit in my highchair all evening and will cry if you take me out.

Like sands through the hourglass, these are the days of our lives.

I went to Whole Paycheck today to stock up on J-man food. I bought 6 bags of Veggie Sticks. Yep, six bags. If WP were a 30 minutes minimum drive from your house, you would play the stock-up-game too. I also bought 459082371526 jars of organic baby food, but not the 2 soups that I was looking for, because they were out. Son, I would like for you to eat real food sometime soon. Like last Thursday.

What a difference a week makes! J-Man has gotten into his medicine groove with the fish oil! This has been the ritual with everything else he’s taken in the past - several days of karate and fighting it and then a grim acceptance. He never likes it, but makes his peace with it. Of course, none of his other medicine smelled like a fish camp.

So it looks like that part of the equation is good for the duration. I can’t say as we’ve seen any major improvements, though it does seem that his eye contact and interaction are getting better. As Mary says in the above post, we may be seeing a trend toward improved communication!

Again, this is by no means a scientific report and we don’t have any foolproof method of charting his progress. We don’t have any standard by which to measure what ’success’ means here either. I guess we’ll just know it when we see it.

For me, “I love you, Daddy” will be more than enough.

You’ll be pleased to know that the guide to eligible expenses that can be taken out of your flexible spending account has clarified some important social and theological issues.

Glad they cleared that up. This probably saved them from having to cover potato chips and cheesy poofs, too.

I particularly liked the theological implications of the next one.

I guess Tom Cruise didn’t yell hard enough.

All humor aside, breastfeeding supplies are not covered under flexible spending plans. We already knew this, but it still chaps our collective butts. God forbid we encourage breastfeeding even though every medical and child-oriented organization on earth recommends it. So working moms have to eat $300 plus the cost of supplies (at least, after you throw in a power supply every year and replacement parts on top of everything else) to pump milk for their kids while they’re at work even though doing so has shown that their kids will incur fewer medical expenses over time. But we’re not bitter. [end rant]

We had our first session with the doctor doing J’s autism evaluation. While spending two hours talking about all the things your kid struggles with isn’t exactly our idea of a fun morning, we were impressed with him and the interview. What a difference it is from the evaluations we’ve had with the county!

J-Man stayed home with my dad this morning while Mary and I took the 30-minute drive to his office. We’re so rarely without him that it was like this surreal date.

Anyway, the interview was based on what’s called the ADI-R - the Autism Diagnostic Interview - Revised. A pretty readable description of it is available here. What I liked about it is that it has a standardized structure to it, but it’s not a purely formal ‘test’. It felt like a conversation the entire time, and we were able to talk about things in whatever way or order we felt comfortable with. Again, what a huge difference from previous evaluations! The ‘test booklet’ was the size of an average magazine, so it was thorough. At the end of the main interview, there was very little we hadn’t covered.

The big positive in my book was that he listened. It’s that simple. The one thing he did that I noticed immediately was how often he said, “earlier I heard you talk about…” and then would move into a follow-up question that clearly demonstrated that he was paying attention to us. I don’t think we had to repeat ourselves at all unless we wanted to. He seemed to get it all the first time. If you’ve ever had to repeat your child’s story over and over again, especially to really dense people, you know how great it feels to be heard the first time.

The doctor will review the results of this session and score it before he sees J-Man so as to ensure a completely independent evaluation from the next round. This should give us some confidence in the final results if everything matches up.

So in two weeks, we’ll have our big day. Right now, I dread it, but I have a lot more confidence after meeting with the doctor. This is so hard on J, but he’s brave, more so than us oftentimes. I just want this to get easier for him. This hasn’t been the best couple of weeks, but then out of the blue he runs up and tackles me cackling so hard he snorts. Those are the times we know it’ll be OK.

We had to be at the doctor’s by 8:00 so we had to get J up way too early. As a result, by his 12:30 speech therapy he was toast. It was not a good session, but to her credit, his speech therapist coaxed some words out of him. The new one was “Boom!” You know, after all this, every new word makes up for whatever else goes on. Yesterday was rough, but last night he said bubbles (’buh-buh!’) while playing with his bubbling bath toy in the tub and that washed the whole day’s difficulties away.

It’s the little victories, one at a time, that make all the difference.

What started out as a manageable-enough process of giving him fish oil in an oral syringe turned into full combat after the first couple of days. If I knew a martial art it might have been easier, but I doubt it.

The last couple of days have been a bit better - a relative concept. It has made giving him his other reflux meds harder as he distrusts everything we give him now. He holds a long grudge about these things. I personally don’t blame him. It’s not the most pleasant stuff in the world to take.

So far, no noticeable improvements in speech or otherwise as far as I can tell, though he has seemed more chatty in the last few days. I didn’t do an in-depth statistical analysis or anything, but I think he’s been using syllables a bit more often rather than his normal R2-D2-like moans and grunts. I haven’t seen any physical side effects so far, so that’s a big positive.

It’s supposed to take a while to notice much in the way of improvements with Omega-3s. It’s hard to be patient when you pray everyday that something will work. But it’s a lot less messy than offering animal sacrifices, so we’ll hang with it.

As Mary said, next Tuesday begins a three-part, private evaluation to see whether J-Man has something on the autism spectrum.

After reading endless books on the subject, he doesn’t seem to fit any of the categories for ASDs, but he does fit some of the characteristics of some of them. The DSM-IV (the Gospel According to Mental Medicine) requires kids to meet some number of criteria within a particular diagnosis in order for that diagnosis to be, um, diagnosed. As best we can tell, he doesn’t cross that threshold for any of them. I suppose if it’s any of them, PDD-NOS (a.k.a. “um, we don’t know”) is the most likely one, but who knows.

In case you’re wondering why we’re having this evaluation done - and paying for it out of our own pockets no less - even though we don’t think he is on the spectrum, the truth is that we want to either rule it out or keep it in play based on a thorough evaluation, not the drive-by evals we’ve gotten through Early Intervention (EI). We might as well shake a Magic 8-Ball for all the good those evals have done us.

Don’t get me wrong. We have plenty of good things to say about EI; this just isn’t one of them.

The evaluation will take place over three sessions over a four-week period. The first is just for the parents to be interviewed, listened to, and go over the very long, and pretty depressing, questionnaire we’re filling out. Thank God an evaluator is finally listening to what we think! The second - two weeks later - will be us and Mister Man. The third one I guess is to go over the results.

He absolutely hates evaluations. He doesn’t “test well” apparently. Of course, the Dart Throwing Diagnostic Indicator tests we’ve had so far probably account for a lot of that. If he had the fine motor planning control to flip them off, he probably would have. In the end, it felt like an episode of Dance Fever (”Your moves were sluggish and off the beat. I give it a 42.”) with about as much statistical relevance.

Anyway, this private practice comes highly recommended. We’re finding J-Man’s diagnoses by process of elimination as much as confirmation, so we hope this gives us something definitive one way or the other. In many ways, this won’t change his therapies, but it will give us something more to work with when he graduates into the school system’s programs in a few months.

We’ll keep you posted.

On Tuesday, we have our first meeting with a doctor who is going to do an autism evaluation for the J-man. I’m of 2 minds about this: I’m afraid to go forward, because I worry that he will come back with a diagnosis of autism… but I’m also looking forward to it, because one way or another, we will know something at the end. The first meeting is actually just for the parents – it’s not until March that J-man will actually meet up with the doctor for a two-hour evaluation. We haven’t had the best luck with the county evaluators at this point – one that occurred in our home had the doctor actually yelling at my son. That’s part of the reason we’re going with a private practice this time, even though that means we have to pay $1400 out-of-pocket.

I’m afraid, and I’m excited. Reminds me of worrying about labor…

Last year’s health care spending orgy will stand another year as the fastest ever to our $2,200 deductible. J-Man’s two-day hospital visit for the norovirus vomit-fest last February assured its place in history.

That said, we’re pretty close already. We’re doing Rx roulette right now to figure out the right order to submit our prescriptions to get the least out-of-pocket costs. Once we go over the deductible, $600 medications suddenly turn into $35. Woot! (pathetic as that is…)

Thank God for flexible spending accounts. We’re essentially borrowing against future contributions into it at no interest. It’s sad that we fully expect to soak our $5,000 annual contribution to it well before the end of the year.

Next week’s autism evaluation should help that out…

We’ve read and been told by a handful of people that giving kids with severe speech delays (and other developmental issues) fish oil supplements can make a world of difference. Sometimes we wonder about the wonder-drug-like claims made about Omega-3 fatty acids, but at this point we’d face a strong north gale and pee into it if we thought it would do any good.

So after doing our typical obsessive amount of online research, I went to Whole Foods and picked up some fish oil in liquid form. There is no way in hell and Georgia that J-Man is going to take pills or eat those chewy things that some egghead thought kids would actually ingest. Unless they can bake it into a tortilla chip, eating it is out.

I lucked out and found a liquid that required only 2.5ml (half a teaspoon) to get to what is generally considered a therapeutic range for toddlers. That’s less than the Reglan (reflux med) he takes, so we were hopeful we could get it in. About 5ml is his breaking point we’ve discovered.

Supposedly, the therapeutic dose for toddlers is about 500mg of combined DHA and EPA per day, though there are no definitive studies about this. God knows I’m not a doctor, so talk to your pediatrician first, preferably one that has a clue about supplements. I did learn to be careful about one thing, though. Some Omega-3 supplements contain Vitamins A and D, so be careful since above-recommended levels of those can be toxic.

The first couple of days we tried masking it in his applesauce but that was a total bust. He is super-sensitive to taste, and probably smell too. The shove-it-in-before-he-has-time-to-fight-it method looked to be our only shot.

Yesterday, I got the fish oil into an oral syringe (thank you Target for our endless supply of them) and got it in him, though not without some ju-jitsu from both of us. It’s strawberry-flavored and it doesn’t smell or taste that bad to me. Mary thinks it smells like an abandoned fish market. It does have an aftertaste, but ‘after’ is the operative word there. After it’s in him, I don’t much care. I gave him some iced tea to wash it down and he seemed OK with it (which is all relative).

It’ll take a while to see any difference, assuming we do. If it doesn’t, I guess we’re on to burnt offerings and word-saying. Let’s hope it doesn’t get to that. It’s probably against our HOA covenant.