Two parents, one autistic toddler, half a clue, and just enough light to see by

J-Man had his appointment with the audiologist today. No one really thought he had any hearing issues; this is just part of the process for getting into the county school system. All this is for preschool and therapy services and completing the umpteen steps required before we have his IEP meeting in August.

The audiologist couldn’t find any problems, said from what she could determine (he didn’t exactly cooperate with some of the tests) that he was within or near normal ranges for hearing at the various frequencies, and cleared him to continue with the next round of evaluation processes. I’m assuming that if they had found anything that they would want to address any hearing issues first before doing other evaluations, which would make sense.

They were very nice and understanding that this wasn’t something he was going to particularly care for. Closing us up in this small, cramped, acoustically-calibrated vault (there were three adults and him in there…) on a 95 degree day wasn’t exactly our idea of a good time. It was at least in the 80s in that room. We were all sweaty and grumpy by the end of it.

We figured they were going to say he was deaf because he pretty much ignored them most of the time, but that would be normal for him during evals. Since he doesn’t really sign or give any readily understandable cue that he understands what you say unless he can go point to a picture or perform some limited action, it wasn’t all that clear what he was doing.

I was prepared for the usual conversation that objective data doesn’t paint the entire picture, blah, blah, that we normally do. As a pre-emptive strike and for good measure, we showed them that he could fill in the blanks for parts of “Old MacDonald” and the ABCs. That perked them up a lot. I think it helped. They realized he does understand stuff.

They couldn’t do a full workup since he was uncooperative at times, but they said his hearing of voices and music were fine (no shock there) and she was good to clear him to go to the next thing in the bureaucratic gauntlet, of which I’m starting to get immune to.

Unintentionally funny moment - She tried sticking the automatic measuring doodad (technical term) in his ear to get more data - more or less the same one they use on babies at the hospital - but that requires him to be both still and quiet. Heh. No chance in Helena of that ever happening when someone is messing with his ears.

We did manage to get enough of a reading for the thing that measures eardrum vibration and any fluid that might be in there. It doesn’t measure hearing, but it does measure that at least the eardrum is moving and fluid isn’t screwing anything up. It doesn’t require him to be quiet, and Mary and I basically sandwiched him into a hug long enough for them to measure both ears. No problems there! Yay!

In a long string of depressing evals, this was a bright spot. On to the next thing (whatever it is). W00t!

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.

As we develop this hybrid of therapy work for us to do at home in between J-Man’s work with his therapists and his time at school, we have been drawing a big blank on one critically important piece of the puzzle. I call it ‘reward pellets’.

The concept comes basically from how they train animals. They do something right, they get some sort of reward. Often, it’s a food pellet.

This may sound completely silly in a conversation about autistic kids, but it’s an important part of the structure and motivational processes needed to keep moving forward. The more you talk about this stuff, the more it sounds like training a schnauzer. But, it is what it is, and you get over it eventually.

If you have an autistic child, this probably isn’t news to you. In certain instances, if your child completes a new task, responds to your question, names an object for the first time, or something along those lines, you’ll give them a special treat or reward of some kind. We tend not to do this quite as often as some therapies lean toward, but we do have “you’ve worked hard, you’ve earned X” as part of the equation.

As part of the home classroom work we’re devising, we’re coming up with a system of ‘picture scheduling’, a way of using visual cues of some sort to illustrate how we’re going to sequence something, whether it be daily activities or the classroom tasks we’ll be doing for that ’session’.

For example, on his desk, we now have three (or four for lengthier sessions) colored shapes (red heart, green square, blue circle, plus yellow star for the fourth) in a row across the top of the desk. Next to him (on his left) is a bookshelf with three (or four) open-top plastic bins with those same shapes in the same order.

Our goal will be to get him to remove the first shape from his desk (red heart) and match it with (stick it on) the red heart on the bin (it’ll stick on with the velcro), do the activity in the bin, put it back in the bin, put the whole thing in the ‘done basket’ (a large clothes basket on the floor), then move on to the next shape and activity, and so on until we’re done.

[I'll get around to posting a picture of this soon.]

Here’s the missing link. At the end of the row of shapes is (or should be in our case) a picture of the ‘reward’ (also known as a ‘reinforcer’ or ‘reinforcing object’ I think). For some kids it might be a picture of an M&M or a favorite toy or something. The idea is that it should be something special and not otherwise part of the classroom routine.

Our main problem? J-Man isn’t really attached to any toy, food, or anything else for that matter. He’s really attached to us, but it’s not like we’re going to reserve hugs for rewards or something.

Our partial solution is to use pictures of his favorite TV shows. When he completes all the tasks, he gets five minutes of a show. This means we have to cue up the DVR to the right place beforehand so that it will just show five minutes and not abruptly end mid-show. Easy enough, though. The hope is that this whole cycle will take about 15 minutes - 10 for the activities and 5 for the ‘reward’ - with the goal of completing four cycles in a row (or an hour total, however that works out). I’m not real jazzed about using TV for this purpose, but we’ve been low on options.

If the end of those activities mean the end of the classroom time for a while (i.e., we’re off for a couple of hours), the picture could be of his swing set, which is NOT something we could do for five minutes without inciting a riot. Plus it’s getting so hot that our ability to use it will get limited soon.

That brings us to our latest discovery, which may very well be the reward we were looking for.

Going on the “keyboards are the best things since cheese toast” revelation, we discovered the LeapFrog ClickStart My First Computer. It’s a regular QWERTY keyboard like ours (he would have noticed if it wasn’t) and the games included on the console can be simplified enough that all he really has to do is sit there and type. Letters appear, it names letters out loud, and generally fun things happen. We think it’s cute.

He thinks it’s so great he’s almost beside himself.

Yay!

To make sure he doesn’t just use it to zone out, we sit there and ask him to type a particular letter (he may or may not), encourage him to try various parts of the keyboard (he’s pretty fixated on ‘K’ because he recognizes it and he can say it), and generally be there to be interactive. He also was getting very excited, which results in lots of hand flapping and general overload, so we’re there to do the normal stuff we do to help him stay centered (deep pressure, massage, singing, etc.)

The obvious question is, if it makes him do that and you have to center him, why do it? Mostly because his best learning takes place in a certain zone (we call it the ’sweet spot’) where he’s not too over or under-stimulated. Under-stimulation is just as stifling to his ability to do anything as the overload is. He can zone out or get overloaded in just about any activity. The ones he’s really excited about do make it hard for him to settle down, but that’s part of the process of things he needs to learn. By being there and being interactive (and not letting him drop out or go into his own world with it), we turn it into a quality activity.

Anyway, looks like Leap Frog has provided our ‘reward pellet’ for now.

Question for the masses, particularly those whose kids are attached to very few things - how do you handle the reward thing?

I originally wasn’t going to weigh in on the recent, reprehensible treatment of Alex Barton by his kindergarten teacher in St. Lucie County, FL because it’s been written and blogged about at length all over the Web. I didn’t really know what I could add to it. But prominent bloggers who write about issues related to autistic children are calling for all who stand with Alex and his mother, Melissa Barton, to post their thoughts and show solidarity both with them and autistic children everywhere.

To briefly catch you up if you missed this, Alex Barton is a five-year-old boy on the autistic spectrum who - I can’t believe I’m writing this - was voted out of his kindergarten classroom after his teacher, Wendy Portillo, polled the class about whether they wanted him removed from class for the day. The class voted for him to leave by a count of 14-2. I wish I was talking about some alternate, bizarro, Survivor-esque universe, but I’m not.

[To catch up on the latest news, here's an article from the Palm Beach Post. There's a great post at Asperger Square 8 that you also must read.]

For what my thoughts are worth, here they are.

One of my biggest fears for J-Man is that other kids will regularly bully him in school just because he is ‘different’. Honestly, I fully expect it, and the hurt I already feel is terrible. He most likely will start preschool in our county’s autistic children’s program this fall. I confess my breathing gets shallower just writing about that. This will be a major transition for him, obviously, and I don’t need the fear of bullies making that worse. But that will be something I’ll have to deal with.

When I read that afterwards Alex kept repeating “I’m not special,” my heart broke. I tried to imagine J-Man sitting in the floor repeating those three words over and over again. I couldn’t. It hurt more than I could bear. Even writing this hurts. I can’t imagine being Melissa Barton right now.

As parents, we need to know that we can count on our children’s teachers, and for the most part, I believe we can. J-Man has had excellent teachers and therapists so far, and we are thankful every day for them. We need to know that people at our schools will be there to help our kids be the best they can be and serve as a voice that counters bullies and other people who might belittle them. We need to know we can count on them to treat our children as special and uniquely wonderful, not fear having to count them among the bullies.

Regardless of what anyone believes about children inherently wanting to rebel against their parents and adults in general, adults still have an incalculably powerful influence on them. When an authority figure teaches children, especially at that age, that excluding people who are ‘different’ from the community is OK, what do you think they are learning? What do you think that will translate into as these kids progress through school and into adult life? What kind of future are we creating as a result?

In a world overflowing with messages to exclude and reject those we do not like, those who are different, and those who ‘make us’ feel uncomfortable, there must be voices that proclaim the inherent and immeasurable worth in each person. We must be those voices.

Every kid needs the authority figures in their lives to accept them where they are. That doesn’t mean we’re not supposed to set boundaries and have rules and expectations. We start with a fundamental acceptance of the truth that every child, regardless of their abilities, has infinite worth. That is the foundation we must build everything else off of.

There are truths in our society that are self-evident and inviolable. We don’t get to put these things up for a psuedo-democratic vote. You don’t get to decide Alex’s or anyone else’s innate worth as a person and member of our society. That kind of world shouldn’t be allowed outside your TV. If you watch that kind of junk and take it seriously as something to emulate in your ‘real’ life, it’s time to go bury your TV.

In case I haven’t made my point clear yet - You don’t get to extinguish his light or anyone else’s. Period.

Shaming like this just leads to greater and deeper shame, creating this endless, horrible, destructive cycle. Kids who have special needs will get enough shaming in their lifetimes to make our hearts ache every day, if not every hour or minute. They need to know we’re sticking up for them.

They need to know that the people who love and value them simply for who they are will be ready and able to champion them no matter what. They need to know that our voices are stronger than those who either through intention or ignorance would tear them down. I hope in some way that my words will help him know this. And I hope every day that I will have the courage of strength and conviction to stand for them, no matter whose children they are.

There are lines you simply do not cross, and in this act, this teacher crossed it. As parents, we must hold that line without compromise against anyone who willfully or ignorantly breaches it. We are the first and last line of defense for our children. If not us, then who will?

What do I think should happen to Ms. Portillo? Schools have zero tolerance policies toward students, and I think teachers should have similar expectations and consequences for such egregious actions. She may just have been poorly trained and made a ridiculous error in judgment. I don’t know. And at the moment, I’m having a hard time caring about the difference between intent and poor decision-making.

Regardless, I think termination of her employment and suspension of her teaching license would be the minimum I would ever accept as a parent. If she finds some way to show by her actions that she has earned the trust needed to be a teacher again, then I believe in reconciliation, but I imagine that will be a long time coming. But my advice to her would be, don’t be surprised if many people neither forgive nor forget. You just don’t mess with our kids, and we won’t take ignorance as an excuse.

I try hard to find something to build from in every situation, no matter how awful the whole thing seems. Here’s what I found to hold on to from all this.

I’m heartened by the overwhelming support and action that has flowed forth from parents and bloggers of every kind from every corner. The world of autism has many factions, many controversies, and much disagreement, but mess with our kids and we will act as one voice. Our children are more important than our differences, and this has reminded us of that.

In the Internet age, we are serving notice. Acts such as these will find the light of day. We will make sure of it. We are watching and listening. We aren’t some tribal council; we are the entire village. We have spoken, we are speaking, and we will continue to speak until our children are treated with respect and dignity.

Given the challenges we face every day, we do not give up easily (or at all) and we have developed incredible endurance. We’ve had to. Autism is an endurance event. It requires all of who we are. We’ve learned that this is what it takes to help our children grow and thrive. And we recommit ourselves to it every day, by both necessity and by choice.

I wish my son didn’t have to work so hard at everything, but he does and does so bravely. He inspires me every day. If I can love him through his challenges by the sheer force of my will, I will. I celebrate him just for who he is. He has become my teacher. Maybe when this teacher decides to become the student for a while and learn what all this means, she will understand what all the Alexes of the world have to offer us.

Also, two kids - for whatever reason - voted against this abominable act. It’s been 30 years since I was in kindergarten, but I don’t recall going against your peers being any more popular then as it probably isn’t now. I don’t know their motivations, reasoning, or feelings about their choice, but I applaud them regardless. My hope for them is that their light of compassion, decency, and their sense of right and wrong is such that no teacher, adult, or peer can ever take that away from them.

I close with two messages.

To Melissa Barton - There’s nothing I can really say that could possibly relieve you of what you have to carry right now, but I will say this. We’ve got your back. You are not alone.

To Alex Barton - You are wonderful and special and perfect just the way you are. You are unique in all the world. Don’t let anyone ever tell you otherwise. Let your light shine. Let it shine, let it shine, let it shine!

You know those days where there are some rotten times (like when the person who was supposed to be helping me closed all my browser windows remotely, even though I had one open to the exact place she ended up going back to, and then saying, “Yeah, this isn’t what I do. You have to call someone else.”), and then there are sweet times?

This is about the sweet times.

The J-man still has this nasty cough, and it seems to get worse when he tries to go to sleep (maybe because of positioning or something), so he really hasn’t slept a lot. He was so tired today before his nap - he essentially snuggled up on Pepaw until I went downstairs for lunch, then snuggled between us for a bit before Pepaw carried him upstairs for his nap. It was lovely and quiet in the nursery, and I nodded off several times, and the J-man was just about out, but he MADE SURE to kiss me before I put him down.

Then, when he couldn’t sleep from the coughing and got upset, Tim went in and rocked him for a very long time. No sleep, but some rest snuggled against Daddy.

Every time I’ve been near the J-man today, he has wanted a hug, or a kiss, or to hold my hand, or something. I could eat him with a spoon if it wasn’t illegal in this state. He smells better than the chocolate/caramel dessert I had yesterday (which I DID in fact eat with a spoon - could possibly be illegal here considering some of NC’s stupid laws). Even when he’s refusing to follow any of our instructions, or being noodle boy, or even when he smacked me with the remote today (on accident people!… uh… person) - he’s still yummy enough to chew on.

The J-man is having one of those days. OK, maybe one of those weeks. He does brilliantly at some things (see also: the typing thing!), and then completely loses it with others (see also: speech therapy today. Whew!). I don’t know if he’s still just off his game from being at the grandparents for the weekend, or if he’s going through a growth spurt or some kind of developmental spurt, or what, but it’s been WILD in the old Flashlight house lately.

First off, little man isn’t sleeping a whole lot. He is spending more and more time kicking the side of the crib instead of sleeping. Second, he’s not listening to directions as well - yes, I know we’re talking about a 2-year-old, but there were still things he would respond to. His eating has been pickier than ever - although cheese toast is still a huge hit, the nuggets aren’t as awesome as they used to be. And, the shirt chewing is back. He essentially is a big ball of stress.

On the plus side though, he knows WAY more of the alphabet than we thought. When we sing it to him, he says, or tries to say, many of the letters, and is learning to recognize them on the keyboard, or in his ABC board books, as well. Go little man! He is pointing to and recognizing more pictures in the book Tim reads him every night at bathtime, and there is nothing so cool as watching your kid point out ALL the flowers on the page when asked where the flowers are - especially when we had only previously pointed out the flowers in the ground that Tigger is watering, not the ones Pooh is holding, or the ones by the fence, or the one that Eeyore is admiring.

He’s also really working on saying “I love you” which will just melt your heart. He’s working hard on climbing and going down steps, and is able to do it holding onto the rail and someone’s hand - occasionally taking “big boy steps” which I don’t think we’ve consciously tried to get him to do yet.

Hopefully, we’ll settle back down soon, since he has a hearing test next week, then (dun dun duuun!) the dentist the week after. Can’t wait.

OK, I’ve heard a lot recently about non or barely verbal autistic children being able to type and communicate like gangbusters. Typically this is for older children, though.

When you start seeing your own speech-struggling, not-terribly-receptive-to-word-games toddler identifying letters on a computer keyboard, that’ll freak you out, in a good way of course.

J-Man LOVES computer keyboards. He doesn’t bang on them at all, just thoughtfully presses keys here and there. I occasionally hand him one from our pile of surplus keyboards, but it doesn’t interest him as much unless it’s attached to a computer he can ‘accidentally’ reboot or delete files from…

In any case, he stood in front of Mary’s laptop and started playing around with the keyboard. Here’s the I’m-not-making-this-up summary.

M: Where’s the ‘K’?
J: (after a few seconds, presses the ‘K’ several times)
M: That’s right! ‘K’!
J: Kay-kay.

M: Where’s the ‘U’?
J: (hunts thoughtfully for about 15 seconds, then presses the ‘U’ many times)
M: That’s right! ‘U’!
J: (something like) uh-ooo!

[Daddy is currently scraping his jaw off the floor.]

[Crowd thinks, surely not another?!]

M: Where’s the ‘Y’?
J: (hunts thoughtfully for a few seconds, then presses the ‘Y’ a few times)
M: That’s right! ‘Y’!
J: (tries to say something like ‘Y’)

We repeat this for ‘M’ too, and after that he says ‘muh-muh’, at which time I’m simultaneously freaked out and dumbfounded and especially proud.

Maybe we should go get him one of those toddler computer-y things that talks back when you press a letter.

Dude. I don’t know what to do with this one yet. Well, except say “Yay!”

After last week’s wild travel adventures and being so far off our schedules that we might as well have been in a different dimension, we didn’t expect a whole lot on the progress front this week. Our goal this week was just to regroup and get back into the routine.

Our sleep has been erratic (and generally too little of it) and we’ve been racing to catch up with all the undone crap around here. We’ve had to do some extra work on a few things with J-Man to get going again, but on the whole it’s been a really positive week.

Talking started off a bit rough this week; getting him to ask for ‘more’ of anything was a total ordeal. Our usual pattern of withholding something until he asks for it - even if we know what he wants - wasn’t going well, and it was obvious he was less patient and getting way more frustrated than usual.

The last couple of days, though, he seems to have gotten back into it and then some. The fill-in-the-blank speech therapy work we do with stories and songs has gone gangbusters all the sudden. It’s clear he knows a lot more about the words in those stories and songs than we thought. He continues to surprise us every day.

We can’t help but do “Old MacDonald” since he fills in “oh-oh” after “E-I-E-I”, “cow-cow” after “and on his farm he had a…”, and then “muh-muh” for the cow sounds in the right places. The first time he did all that, we all teared up. It still doesn’t get the least bit old.

He surprised us even more by filling in some of the letters and words in the ABCs song and words in Dr. Seuss’s ABC book. If he needs a more obvious hint about what comes next, I’ve found that sometimes I can just mouth the word without saying it and he knows what to say. That was a pleasant shock, too!

So, obviously, the fill-in-the-blank work has been fantastic for his speech development.

The other major achievement of the week was that he fed himself almost an entire bowl of applesauce/puree with his spoon a couple of times! Sure it was pretty messy and he dropped some of it on himself because of the, um, unique way he holds a spoon, but I felt amazed watching him do that by himself. This is such a huge achievement for him that I can hardly put it into words.

He’s also branched out some from cheese toast to eating honey and butter toast as well, which seems to have helped the nagging cough he’s had for the past few days. It’s a small step forward into softer, more sticky and squishy textures, but for him every step forward is a hard-earned one.

I was a bit uneasy when I dropped him off at preschool yesterday because he threw a big crying fit, but I stayed with him in the classroom for a few minutes and he calmed down. He went off and did his thing and did well for the rest of the three hours. His teachers said he had much better focus during both art and circle time than usual. Given how fidgety he is and how un-fun he finds art, this made for a banner day!

I read about half of Stanley Greenspan’s Floortime book while on the various flights and have been experimenting with some of his suggestions. The J-Man has responded well to just some basic, low-key engagement, working with him on whatever he’s chosen to do rather than forcing him to do something. We’ve gotten some good eye contact that way and he’s easier to engage.

I’m not a Floortime convert or anything, but I do think it will form a piece of the whole puzzle of stuff we’re devising for him. The county schools use TEACCH here, so Floortime will compliment both that and some ABA activities we’re planning on doing by providing something more relaxed and free-form for him. He does so well with structure, but it does burn him out after a while, so we need something like Floortime to let him do some self-directed, easier stuff.

For those of you who don’t know what the heck I’m talking about, I do have plans to create a vocabulary page at some point.
That’s all from Chez Flashlight for today. Off to rest my strained wrist - my latest fatherhood/lugging around heavy-ass luggage injury.

This is how nerdy I am: in the past 2 days, I have sent email to both Rita from Surrender, Dorothy and Melissa at Shakesville… and both have answered me. Both emails were for technical issues I was having with their sites, and they were both gracious enough to answer me directly. You should have seen my reaction when I got real-true email from those famous people!

I’m considering printing out the emails and bronzing them. Or something.

I set it up so you can subscribe to our blog through FeedBurner. My main reason for the change was to give people a bunch more subscription options and to give me a better way of tracking blog traffic. I’ve been using Google Analytics, which is good for what it does. The old feed address should (hopefully) still work, and if you don’t feel like making the change, no worries at all. I also set it up to work through Technorati, but I haven’t the foggiest idea how to use that yet.

“Does that mean you’re spying on me?!?!”

While it may fill my ego to know we have a growing number of readers, I’m mostly interested in what posts people in general are reading and what search engine terms are used to get here. This helps us get a feel for what people want to know more about.

(BTW - Nothing we see personally identifies you in any way except for whatever you decide to post in a comment. We intentionally set this up so people could be as anonymous as they wanted to be.)

On top of autism-related search terms, we’ve had a lot of hits on speech issues, fish oil, apraxia, and other things related to late talking or non-verbal children. The picture board/PECS discussion was a hit based on visits and searches. Sensory issues are also popular search terms.

Knowing these sorts of things will help us anticipate the kinds of information you’re looking for, and we’ll try to plan future posts accordingly. That won’t stop us from blogging about whatever the heck we feel like blogging about a good chunk of the time, but we are a community of parents who just want to learn how best to help our children. If we can help keep the conversation going, we’ve fulfilled one of our biggest goals.

What I find particularly poignant are the numbers of searches that lead people to us that clearly involve parents just trying to figure out what the hell is going on with their children. I read the aggregated list from Google - which includes words like “flapping arms” and “doesn’t respond to name” - and think, “there are a lot of scared, confused, stressed-out parents out there, and I’m one of them.”

We’ve already (electronically) met some of our readers and those conversations have meant a lot to us. We invite you to say hi and let us know if you have questions. We can be a little slow to respond depending on how crazy things are at The Flashlight House, so we’ll apologize in advance for that.

Again, thanks for reading. Y’all are great!

Someone asked us what brand of fish oil we use for J-Man. It’s Nordic Naturals Children’s DHA. This isn’t so much the result of extensive brand shopping, but rather it’s what Whole Foods had in stock that satisfied some basic requirements.

Upon the recommendation of one of his therapists, we decided to try fish oil based on research that it has helped some autistic and children with speech delays or apraxia. “Helped” was measured primarily by improved cognitive testing scores and speech usage over a 90-day period. Because of its widespread use (I take capsules myself) and researched benefits for a variety of things - not to mention there doesn’t seem to be any indication that it does any harm - we decided to give it a try.

There are a lot of questionable products and practices out there involving supplements and other related treatments for autism. Fish oil seems at worst benign. First do no harm should be the rule for everything we try for our kids.

I don’t recall exactly what we paid for it, but 4 fl oz bottle of this brand (it’s berry-flavored liquid) should run about $14-15; an 8 oz will run about $25 or so. By my rough figuring, this is about 50 and 100 doses respectively. A dose is 2.5ml or 1/2 tsp.

From their product page, one dose contains:

EPA: 205 mg
DHA: 313 mg
Other Omega-3s: 113 mg

500 ish milligrams for EPA + DHA appears to be a fairly accepted sweet spot for fish oil for autistic and speech delayed kids in the couple of studies I read. Keep up with the research as best you can to see how this evolves. Largely they are taking educated guesses at this point.

Here are the requirements we set when we looked for fish oil:

• It had to be as pure and free of toxins and crap that are in low-quality fish oil as much as humanly possible. (generally this is down to fractions of parts per zillion)
• It had to be in liquid form because of J-Man’s severe oral defensiveness and lack of interest in eating anything weird or having it mixed in his food.
• It had to hit that 500 mg ’sweet spot’ (see above).
• A dose had to involve 1 tsp or less of liquid (i.e. 5ml or less) because giving him much more liquid than that in an oral syringe is extremely difficult. Hell would freeze over before he took liquid medicine from a spoon.
• We had to be able to get it fairly easily and not order it from Outer Mongolia.
• It had to not taste or smell like fish ass.

The Nordic Naturals stuff succeeded on all but the last count, though I don’t readily know what a fish’s ass tastes or smells like. I imagine liquid fish oil is a close approximation if nothing else. We realized pretty much no product is going to taste that great. I put a little on my tongue and found it tolerable. Mary found it disgusting, but she has Super Sensitive Nose so there was no hope there to begin with.

An important thing to note about this and other fish oil products is that many of them also contain Vitamin A. If your child is getting a significant amount of Vitamin A from other sources and supplements, be aware of this. Vitamin A in higher than recommend doses can be toxic. If you decide you need to give your kid a double dose to get to that 500mg point, make sure you aren’t doubling the Vitamin A into an unsafe range.

Like I said, fish oil in any non-capsule form - which is the fate of most of us with younger kids - can easily taste and smell like Charlie the Tuna’s feet, or worse. Even in its other ‘child-friendly’ forms (flavored chews, mix in their food type stuff, etc.), it’s pretty unpleasant. The feedback I’ve read is that fruit-flavored versions are generally the most palatable. One brand I saw somewhere has chocolate-flavored chews. Just thinking about this sends me running for the mental floss.

Here’s a link to the Nordic Naturals product page, if you’re curious. I get nothing out of this if you buy some, in case you’re wondering.

Standard disclaimer: Talk with your doctor, therapists, and other qualified professionals before giving your kid anything. I am not qualified to tell you anything other than what we are doing with our son. I’m not endorsing this brand nor are we advising you to give your kid fish oil nor are we claiming it will help your kid at all nor am I claiming that superstring theory is correct. With autism, there’s so much we don’t know. Treat all advice you get from people with that principle in mind. A recording this is. Yoda, yoda, yoda.

Seriously, I am tired. I mean, tired tired. I’m having trouble keeping my eyes open, and I managed to hit snooze 5 times this morning and didn’t realize I was doing it. So here I sit in my pajamas, since I didn’t have time to shower before starting work. Um, ewwww.

I have a lot to say, but really am fighting the urge to start a huge post when I have a meeting in 20 minutes (which I didn’t schedule, and where I’m supposed to teach something I don’t know well to people who have English as a 3rd language). Maybe I’ll go make another cup of tea. My blood-caffeine level is too low.

As I’m writing this, Mary and I are sitting in the Seattle airport waiting for our red-eye flight to George Bush Houston-tinental Whatever Airport, where we’re be long enough to eat and pee and get on the plane to our real destination - home.

Well, our REAL destination is wherever J-Man is. Her parents are bringing him to meet us at the airport when we arrive, about nine hours from when I’m writing this. We’ve missed him terribly over the past three days - to put it mildly - even though I’ve felt less mental about it than I thought I would.

Every child under age five we’ve seen has reminded us of him. (Mary just ‘awww-ed’ at a child going by us at the gate…) It’s been hard seeing other parents with their kids out traveling, but we’ve gotten through it well enough. Besides, there’s no way in this world he would have lasted more than a few minutes on a plane.

We’ve called home a couple of times a day to check in on J-Man, who - according to Grammy - has done swimmingly well. So either, 1) he’s been doing swimmingly well, or 2) she’s trying to reassure us while he’s swinging from the furniture and frothing from the mouth. For the sake of our own sanity, we’ll assume it’s the former until proven otherwise.

We had a great time at The Wedding - Part Deux, even though it was downright tropical by Seattle standards (upper 80s) and no one here has air conditioning. Luckily, we wore guayaberas for the wedding, which are worn in tropical climates for an important reason - they are loose, breathable, and very comfy when it’s hot. The happy, twice-united couple should be off in Hawaii by now drinking in the sun, sand, and alcohol. Meanwhile, we have a lot of laundry to do when we get home.

We had fun visiting with Mary’s best friend’s family, too. We all went to high school together, frighteningly enough. Special thanks to their kids for de-aging us a few years by getting everyone in the Ford Focus POS rental to headbang to whatever was playing on their scary phones while I was also trying to dodge dead Raccoons-of-Unusual-Size roadkill and follow their mom to the pizza place. They should also get bonus points for attempting to teach me how to play Guitar Hero, which by the way seems to have set off a wave of arthritis in me after failing badly at playing Metallica. My dork score was off the scale there.

I think the lesson here is that it really is good to get away and get a break for a few days. Mary and I have enjoyed being together as just us, crappy plane seats and all. I’ve missed us just being an ‘us’.

We’re probably idiots for flying overnight back to Charlotte and then driving three hours home instead of going 45 minutes to Mary’s parents’ house, sleeping, and trying it again tomorrow, but we just want to get home. I want to sleep in my own bed for once. It’s been nearly a week. Most of all, we just want to see our kid. Of course, we’ll probably go bat-crazy when he see him and be so full of adrenaline and parenting chemicals that it’ll fuel us all the way home.

More trip post-mortem-ering when we get home. (Gee thanks, Alex. Have some Chap Stick. )

We’ll be back to normal programming soon, I hope.

Greetings from 30,000 feet above the East Coast of the US! I don’t know whether there’s a Mile High Blogging Club, but let’s not go there.

I’m on my way home from Boston and the wedding of my best friend - second only to the person I’m married to, of course. I was best man in the wedding. What a great ceremony it was, filled with wonderful people who celebrated like few weddings I’ve ever been to. The outpouring of support was moving, and I especially appreciated the free rides that liberated me from the ridiculous tolls and travails around Boston’s airport, plus a futon to crash on!

It was a bilingual service (English and Spanish), and of course being the lame American that I am, I don’t know Spanish at all. One thing I learned is that there are those moments when you don’t need to know a language to understand the power of the meaning behind them. When my best friend’s now mother-in-law put a double lasso rosary necklace (el lazo - not so great pictures of it here) - a family heirloom of great significance - around their necks to join them together, I had no idea what she was saying, but I knew it was beautiful. I could see the pride and the blessing in her eyes.

Of course, all weddings remind me of ours. It was good to be reminded of what we felt like then and how far we have come since. That’s a mighty long way, baby!

After six hours of sleep over the past two days, I am borderline incoherent, though I’m sure many people think I’m usually that way. Two mornings in a row getting up before 4:00AM has been a bit rough. We’ll be off to Seattle and The Wedding - Part II tomorrow morning. With family and friends spread out all over the country, I suppose no one can have just one wedding anymore.

The Boston trip was a solo for me, but Mary and I are going to Seattle together. The hardest part of all this isn’t the lack of sleep - a few lattes, some sugar, and various other jolting chemicals can artificially keep you awake long enough - it’s traveling without J-Man.

There’s no way on earth he could have handled the wild travel hours, the plane ride and having to stay in a seat that long, the air pressure changes in flight, the noise and the people, and (not) sleeping in strange places. I don’t like flying either so I can imagine what it would be like for him.

(Currently, I’m cruising six miles up in a metallic paper towel roll with wings that was constructed entirely by people under four feet tall…I could just see him in here…)

So after I limp back into the house today, I’m going to shower, eat, dump out the Boston pile from the suitcase and replace it with the Seattle pile, then we’re driving to Charlotte to Mary’s parents’ house. We’re going to leave J-Man with them, fly from Charlotte to Seattle in the morning, then return overnight Sunday night on the red-eye. If we actually come through all that with some measure of alertness and our blood latte level is high enough, we’ll meet her parents and J-Man at the airport, transfer the car seat and luggage, and drive the 3 1/2 hours back home. I may sleep for a month after that.

He’s in good hands with the ‘outlaws’ (just kidding!) as Mary’s parents are hard-wired for grandkid spoilage and do their jobs incredibly well. Lord knows what they’ll have gotten him by the time we come home!

Still, it’s so hard to leave him. I was talking with one of the moms at the wedding and she told me about her - now adult - special needs son. We talked about how hard it is to be with your child most every hour of every day and work so intensely with him and then have to switch all that completely off when you leave for a few days. It feels to me like throwing a speeding car suddenly into reverse.

I saw other toddlers at the wedding and felt terribly homesick. I only last saw him about 36 hours ago, but I couldn’t help but look at his pictures and watch a little bit of a home movie on my iPod on the plane.

When I called home last night to tell him goodnight, I sang him Old MacDonald (one of our new favorites), he pitifully said ‘oh-oh’ after I did “e-i-e-i”, and Mary said he stuck his bottom lip out after that and started crying. She also said he wandered over to my side of the bed and patted it, looking around for me. Let me tell you just how hard that is. Well, some of you probably already know.

We all need breaks, but I also feel like part of me is missing. It’s like leaving home without your car keys, wallet, phone, shoes, and half your clothes, only ten times stronger. After the intense, day-to-day life at home, I realize I don’t know how to switch it off.

I say I worry about how he’ll handle all the normal away-from-home anxiety he has without us around. We’ve never tried it before. In all likelihood, that’s my way of making an excuse for my own feelings. I’ve gone mental about leaving him and my worry about how he’ll handle it is just a good excuse. I’m just going to be one of those parents, and I’m alright with that. It’s a learning curve, that’s all.

Since typing in this tin can of a plane is like trying to line dance in a closet, it’s time to wrap this up. Expect a “holy crap, I miss my kid!” post at some point on the next leg of the journey. Otherwise, we’ll be quiet for a few more days.

All that said, we’ll have even more joyous celebrating to do in Seattle and I expect that will fill us again with a renewed sense of who we are as husband and wife as well as daddy and mommy. Given the stress of recent weeks, that may be exactly the best possible thing for us right now.

“I love you just as you are. I accept you as a blessing from God. I join with you today to be the partner of all my days, to be the mother of our children, to be the companion of my house; we shall keep together what share of trouble and sorrow our lives may lay upon us, and we shall hold together our store of goodness and plenty and love.

When our way becomes difficult, I promise to stand by you and uplift you, so that through our union we can accomplish more than we could alone. I promise to honor and care for you, to speak the truth to you in love, and to cherish and encourage your own fulfillment through all the changes of our lives. I will stand beside you in joy or in sorrow, in ease and in conflict, putting the commitment we make today above any obstacle that we may face.

This is my solemn vow.”

These are the vows I made to my wife almost six years ago.

In the midst of all the strains of all the effort all of us put forth for our children, reminding yourself of the vows you made to your spouse can help you reclaim some perspective - on this day in particular for me. We can give so much to our children and all the day-to-day administrivia of our lives that everything turns into effort. It’s easy to lose track of joy.

When you’re ear-deep in evaluations, preschool planning, therapies, preschools, research, reading, phone calls and e-mails, work, home therapies and activities, and God-knows-what-else, and then you lack enough sleep and energy to make sense of even half of it, it’s easy to assume marriage will just work itself out along the way.

This is not a healthy assumption. There’s a reason why the divorce rate for people with special needs children are so high. It’s very hard, very consuming work, and it’s easy to lose track of your relationship in the middle of it. This is one of the essential parts of Mother’s Day they tend to forget on the cards.

Today, I give eternal thanks that I was able to marry my best friend in all the world to be the mother of our perfect little boy, and that together we have been given all the gifts and joys he brings to our life together.

I give even more thanks for the joy she brought to my life before he was born, and how that joy has multiplied each day since.

When I see her hold him, I get goose-bumps - every time. I see him kiss her and I know everything is right with the world.

I would also be remiss if I did not celebrate the fact that 2 1/2 years ago, this Wonder Woman gave birth ‘the old-fashioned way’ to a 9 lb 4 oz, 21 1/2″ long, 99.99th percentile head-sized boy. After he was out, she did everything but jump on the table and flex her biceps. I’m still in awe.

Today I commit to work harder to not be an ass so much of the time.

Today I vow to do a better job remembering that we are literally three-in-one, that you are the partner of all my days, the mother of our children, the companion of my house. I will stand beside you in joy or in sorrow, in ease and in conflict, putting the commitment we make today and every day above any obstacle that we may face.

This is my solemn vow.