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!

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.

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.

With some regularity, conversations come up about what ‘autistic stuff’ J-Man does and doesn’t do. I know some of these are stereotypical traits, but many of these come out of evaluations and the various ways we’ve tried to figure out his diagnosis.

So for the benefit of our readers who are wondering whether their kid is similar to ours, here’s a description of him and what he does, kinda does, or doesn’t really do. We’ve been recompiling this for his upcoming (re-)evaluations and preschool/IEP stuff, so we thought we’d share.

Obvious disclaimer: This isn’t a substitute for having your child evaluated. You are parents and you know your child better than anyone. If you suspect there might be a problem, trust your intuition. We are not advising you on how to evaluate your child. Go get them evaluated. Don’t just rely on some random people on the Internet. You’re smarter than that.

Reminder - he’s a bit over 2 1/2 years old. A doctor (psychologist with a bazillion years of experience at evaluating kids) diagnosed him with an autism spectrum disorder. He said that at J-Man’s current age, labeling him with “mild”, “moderate”, or whatever wasn’t terribly useful and likely to be inaccurate. He’s also been diagnosed with sensory processing (or sensory integration, depending on who you talk to) issues, apraxia, and motor planning issues, among other delays.

Significant issues he has:

• Severe speech delay - Obviously, yes. We figure he’s going on 18 months behind. The belief is that he has apraxia, which isn’t at all unusual in autistic kids.
• Communication problems - Struggles to communicate in other ways, too; sign language, etc. isn’t in his repertoire. Unless he can pick it up and bring it to you, he has a very hard time asking for things. He also will use your hands to do stuff rather than his own, which is something we discovered is a characteristic of autism.
• Rarely points at what he wants - That’s pretty self-explanatory. He tends to use much more broad movements, which are very difficult to figure out.
• Hand/arm flapping - Flaps his arms when he gets excited or overstimulated. Primarily he does this in the car (the moving scenery apparently is too much for him to take in) and in places like the store (especially ones like Target that are bright, busy, and red). It’ll also happen if he’s watching some TV show that gets him excited. Interestingly enough, he usually looks happy while he does it. The suspicion is that this is a lot of ’sensory overflow’ and doing this helps him order and calm his system.
• Learning problems - We don’t know cognitively where he is because he’s hard to engage in those sorts of activities, but he definitely does way better at puzzles and things like that when he’s calmer. We suspect he knows a lot more than he’s shown.
• Eye contact - Pretty poor, but it seems to be getting better lately. We can get a few seconds of it with people he knows well, not so much with strangers. He definitely is better with this when he feels pretty balanced sensory-wise.
• Sensory problems - Oh yeah; feeding, vestibular, proprioceptive are the biggies. We’ve known he’s had sensory integration issues since forever, and they still affect him a lot. The last couple of days he’s taken up sucking his shirt to soaking again. Yuck! He still loves exaggerated movement (throw over your head, swinging outside, bouncing on the exercise ball) and seeks out deep pressure (big hugs, firm back pressure). He also sleeps wedged in the corner of his bed and was a total swaddle baby. He finds sticky or slimy stuff on his hands really icky (finger paint = yuck). He dislikes most food textures, and will gag at ones he really hates. He’ll sometimes gag when he’s sensory overloaded regardless of what negative sense it is.
• Seriously picky eater - Eats just about nothing except toast, chicken nuggets, crunchy stuff like chips, and purees. He also has some reflux, but that’s minor at this point so I doubt it affects much here. No other GI issues have been indicated.
• Lack of imaginary play - He doesn’t really engage any of his toys in this way; he can be playful with others but I wouldn’t really call it imaginary, nor would I call his play with his peers consistent or much like what you’d expect for his age. His level of play is very cause-and-effect, meaning he presses some button and the toy does something back at him. It’s a much more literal way of interacting, which is another common autistic trait.
• Social awareness - He usually doesn’t acknowledge other kids in the room, but he’s pretty good with adult women (he’s pretty flirty). At preschool, he’s typically off doing his own thing.
• Joint attention - The fancy term for wanting to share with you something he finds very interesting. Example: Child sees a car, picks it up, shows it to you, and then looks at the car and then at you to make sure you are seeing it with him. J-Man does this very rarely, which is another characteristic of autism.
• Responsivity to order in learning - This isn’t so much an issue as it is a common strategy for autistic kids, but he responds very well to doing his ‘learning work’ in an orderly environment, at his little desk, doing specific tasks, without a lot of distractions. Imposing structure has dramatically helped out with his learning and growth.
• Travel - One or more nights away sucks; in the car is normally fine; he just won’t sleep well at all anywhere else but home - two nights away is pretty much our limit before everyone is sleep-deprived and mental.
• Fine motor issues - He has a very hard time manipulating certain objects; e.g., hard to feed himself with a spoon without a lot of help, though he has made great strides in the last week.
• Motor planning - He has a hard time figuring out how to accomplish many tasks, and only occasionally will successfully do something you ask him to do. If it requires a sequence of more than a couple of steps, he pretty much can’t do it yet. “If you’re happy and you know it stomp your feet, clap your hands, and shout Hooray!” is incredibly frustrating for him. You can see him trying to work out how to do it, but his body won’t comply. Yes, it really pulls at my heart to watch him struggle like that. We’ve wondered whether this has made sign language nearly impossible for him; we’ve been trying for over two years. That said, he has made great strides (literally) in the last week or so in going up and down steps by holding on to a railing or your hand. This is a major leap forward for him.
• Responding to his name - This is sort of borderline to me, but he doesn’t do this that well; it’s not so bad we can’t work with it, though.
• Walks on his toes - Yep, but usually only in short intervals.
• Poor muscle tone in his trunk/core muscles - In his arms and legs, he is as strong as an ox on steroids, speed, and Starbucks, but he ain’t going to be on 8-Minute Abs any time soon. Related stat: I weigh 225 and he has knocked me flat on my butt from standing.
• “Flight Risk” - If you put him down, he’s usually going to take off running. We’d never be able to set him down in a store or a mall. If we did, he’d be off to the races. This happens outside too. It’s exhausting to say the least.

Issues that aren’t too bad:

• Fixation or attachment to a particular object - He was pretty attached to Glo-worm and his Leap Frog caterpillar early on, and now he’s pretty fixated on his piano keyboard and other things that make music, along with some of his books. He can get pretty zoned out on them, but not so bad that you can’t break him away from it with some effort or that he doesn’t get up eventually and go do something else. We do have to sometimes hide whatever it is so we can keep him focused on us enough to do his therapy work when the zoning out gets to be a problem.
• Emotional awareness - He’s pretty good with understanding people’s emotions, especially when people are laughing or are sad.
• Sensitivity to routine - We do keep a routine, but mostly out of habit from back in the days he wouldn’t sleep and because it helps him learn better; we can vary it without any real issues as long as we’re not out of town and as long as we give him some downtime in the afternoon.
• Needing physical order - It’s very important to him to have all the doors closed wherever he is. This is annoying sometimes, but not a big deal in the grand scheme of things. I’ve noticed that there are a couple of toys he wants in the ‘right place’, but why these few and not all the others is a mystery to me.
• Sleep issues - Rarely naps anymore but does sleep through the night (12 hours on average); this is SUCH an improvement over the first 18 months when he never slept through and often got up every 2-3 hours.
• Gross motor - He was a very late walker (almost 23 months) so this used to be a real problem, but he’s pretty self-reliant with this now even if he’s still a bit behind. He definitely has his own style, but he rarely falls. Going up and down steps upright (though still with a lot of help) is a recent highlight. There are a lot of steep stairs around, and heights freak him out, so this is a real challenge.

Issues we haven’t really seen:

• Regression - His development has been very slow on various fronts, but he still has steadily improved. We have setback weeks from time to time, but our overall trajectory is toward improvement. He didn’t have a bunch of words and skills and then lose them like some.
• Self-destructive behavior / self-injury - He’s smacked himself in the head a few times, but nothing at all that we’ve worried about. I can’t even remember the last time he did this.
• Uncontrollable tantrums - Never; he does a great job dissipating his frustrations and rarely pitches a fit for more than a couple of minutes. He does some pitiful drama and then we move on.
• Repetitive behaviors - Very little except for the hand/arm flapping.
• Lining stuff up/compulsive organizing - Pretty much never. Our house is often a wreck and he doesn’t seem to care. Like I said before, he has a couple of things that seem to have a ‘right place’, but it’s so minor that it barely registers as anything more than a quirk to us.
• Fixation on orderliness - Doesn’t seem to care if we move stuff around.
• Detachment - He’s very attached to us, loves being with us, and often wants to be held. If you’re familiar to him, he’s very loving. He’s hit or miss about strangers, or even acknowledging that they’re there.
• Aggression - We’ve had it repeated to us several times that an aggressive act is not the same as aggresion. He’s so fidgety sometimes that he can be rough as he rolls all over you rather than sitting still. That said, he hasn’t struck out in anger that I know of.
• As far as we know, his hearing and vision are fine based on previous tests.

Phew. Got all that? We’d love to hear how your child is similar or different from this. They don’t call it a ’spectrum’ for nothing, and there’s so much for all of us to learn. I didn’t even cover a bunch of stuff. If you have questions, feel free to ask!.

We took J-man to the doctor yesterday for a physical. The county requires one as part of the paperwork to get him into the school system setting, versus the Early Intervention setting. The office did very well getting us in on time, but the J-man was NOT HAPPY about being there. He certainly knows that the doctor’s office is rarely a fun place for him.

While we were there, the doctor talked to us a good bit about what we were doing in terms of therapies and the like, and what our plans were for the near future. We told her about the special preschool J-man attends, and his speech, developmental, and occupational therapies. We talked about food, and how what he eats is limited by his sensory issues, and she gave us a few tips about getting some extra calcium into him.

She seemed pleased at the progress he is making, and understanding of how far he has come, although he’s still delayed in most areas. J-man wandered around during that portion, so she got to see him not freaking out… and called him adorable. (Of course she did. He IS adorable.)

Then she said, “It’s so great that you are doing this now when he’s
so young. The earlier the therapies start, the better the outcome usually is. You guys are doing a great job.”

It was nice to hear that. It’s especially nice because I never feel like I’m doing enough, but I also have to have a life too, so I’m constantly pulled in two ways. (Or seven…)

When we were finished, and J-man was all dressed again, she asked him if he was ready to go and get in the car. He looked up at her and raised his arms, and said, “GO CAH!”

Go man go!

I promised this post a while back. Sorry I’m just now getting around to it.

For kids who have severe speech delays and are unable for whatever reason to sign, some variation of the Picture Exchange Communication System (PECS) - known more around here as the ‘picture board’ - is a great way to get some sense of what your child wants. The fundamental principle - any kind of communication is good communication. (You can also read the Wikipedia article, though I couldn’t readily find an easy-to-read description of it.)

I use “some variation of” in the above paragraph because the PECS inventors have a specified way of doing it, and I imagine we ain’t following it to the letter. But that’s OK. This is working for us so far and I’ll tell you how we do it.

Standard disclaimer: Again, this is how we do it and isn’t intended to tell you how you should do it (or even whether you should do it) for your child. We’ve worked on adapting this to work for J-Man in concert with his speech therapist. Your speech therapist will be your best resource in developing a plan for your child.

That said, I think this is worth trying out if you aren’t getting communication by voice or sign. It’s worked well for us, and it comes highly recommended for kids with autism, apraxia, and other severe speech delays.

OK, here’s the picture board. Obviously, the board focuses on food. I’ll tell you why in a second.

[Top row - crackers and puree; middle - tea and chicken nuggets; bottom row - cheese toast and puffed veggie sticks]

It’s a simple piece of dark poster board (so the pictures show up better), tacked on to the wall with double-sided sticky stuff. Underneath the pictures are velcro dots, with the opposite part of the velcro on the back of the picture. The pictures were taken with a digital camera, printed on our home printer, and laminated. They can be detached from the board as needed to swap out pictures or use them for something else.

At first we pretty much moved him over to the board, took his hand, touched it to a picture, then handed him that food item. We repeated this routine for a while, but to our excitement he picked it up pretty quickly. We started with just 2-3 pictures and worked our way up to the current six. You definitely want to keep the choices few and simple at first.

The next breakthrough came when he essentially would punch the picture of what he wanted on his own (first big want - corn chips…) and then he would get it from us. He didn’t make a vocal noise to go with it, but he got his point across and everyone was happy.

Even better was when he’d reach for something and we’d say, “use your pictures!” then he would go touch the picture of that something and come back to us to get it. I’ve even seen him hand me something he wanted, go completely across the downstairs to touch the picture, and then come back to get it!

Lately it’s gotten really good. He’s giving us his words (or word approximations) while pointing (we’re tickled stupid when he points with his index finger) to the picture. This nearly knocked us flat the first time he did it. We still sometimes have to prompt him to point to the picture even if we know what he wants. We want to keep reinforcing the pictures, and so far that’s worked very well. In all likelihood, this will be our most effective form of communication for a good while, though clearly we’re seeing great verbal improvement as well.

So we usually get:

(All caps means the stress is on that syllable.)

• Points to tea -> “KUH kuh” (for ‘cup’ - he makes these syllables longer in duration for ‘cup’, which is important since he uses ‘k’ sounds a lot)
• Points to chicken nuggets -> “NUH nuh” (for ‘nuggets’)
• Points to cheese toast -> “CO co” (his word for ‘toast’ since he substitutes ‘c’ sounds in for ‘t’ sounds)
• Points to veggie sticks -> “keh keh” or “k-k” (like two, breathy ‘k’ sounds said quickly - hard to describe - which is what he does to several words that end in ‘k’ or ‘ks’ like ’socks’)

It’s hard to describe what a miracle this is.

Minor variations - for cheese toast, he may do the above and then go to the toaster, reach for it, then say “coco” again. For nuggets, he may do the above, go to the microwave, reach for it, and say “nuh nuh” again.

He’s not been into crackers lately, so that one’s been ignored for a while. When he was on a cracker binge, he pointed to it a lot, I think largely because he was so excited that he could actually say ‘cracker’.

I promised I’d say why we focus on food and not toys and other stuff. The main issue we’re facing is that the pictures represent something literal to him. With food, what’s on the picture is what he gets. It’s a literal representation of that food. Except for one. Bonus question - which one doesn’t work very well and why?

With toys, a picture of a book means I want THAT book, not just any book. This means that if he’s faced with choices on the toy board of a few things he really doesn’t want to play with, he won’t pick any of them. We have a toy board, but it has been a flop so far compared to the food board. The food board has the advantage of that he only will eat a half-dozen actual foods. So literally everything he eats can be captured on that board. Still, we are staying at it on the toy board. Someday it’ll click.

We have been unable to generalize the objects in the pictures, though that’s the long-term goal. Eventually, the idea is to have a picture of just about any food mean “I’m hungry” with the next step being a way to choose what specific food he wants using specific pictures. This creates a sort of decision tree that could be consolidated into a book if need be.

You might be able to see where a system like this starts breaking down. If you need a literal picture for everything your child might want, you could end up with hundreds of them over time spread over picture boards all over the house. You can put them into a ‘picture book’ (basically a portable photo album), but you need to get to some way to work through it without flipping pages all day.

Our therapists have described the eventual goal in these steps: 1) Child picks a broad category of want (food, drink, toy, book, person, etc.), 2) Parent or child flips to the section that shows individual pictures related to that category (let’s keep with food for this example), 3) Child picks specific want from the pictures in the food section (e.g., toast).

It’s step 1 that we can’t get past yet, and that would probably be the case for most anyone starting out with this. J-Man doesn’t generalize from a picture of any food or a picture of any drink to “I’m hungry” or “I’m thirsty.” Choosing a picture means “I want that.”

In addition to those goals, the idea is to transition to other representations of the objects rather than just photos. This could include more cartoonish drawings or even line drawings. Obviously the primary goal is to get him to communicate well verbally, but again, any communication is good communication. If this helps him communicate his needs until speech can someday catch up better, then we’re all for it.

Answer to the bonus question - the puree. Because puree could mean any puree (applesauce, pears, sweet potatoes, whatever), so it’s not literal. Therefore, he pretty much never picks it because it’s too vague a choice.

Someday I’ll try to get a video of this. Whenever we pull out a camera, he either hams it up or stops doing whatever he was doing, so we’ll need to be subtle about it.

In the meantime, if you have questions about how we do it, feel free to ask. We’d love to hear from anyone else using this approach as well. Thanks!

J-Man has made huge leaps forward in his speech lately. This is all relative and he’s still way behind for his age (almost 2 yrs. 8 mos. and is probably close to 18 months behind), but for him this has been a quantum leap forward the past couple of weeks.

For a bit of backstory:

As you probably know, severe speech delays (or non-existent speech) are one of the pillar symptoms of an autism spectrum disorder and are probably the most straightforward way of differentiating autism from Asperger’s (all other things being roughly equal).

ASD kids tend to fall into two general groups: those who never really developed speech or developed it very slowly, and those who had normal speech development and then ‘lost it’. I know next to nothing about the latter and am not going to get into the debate about what brings that about. J-Man falls pretty clearly into the former group, so I’ll talk about what I know.

He has gained and lost some syllables over time in the past, but that problem seems to have faded away now. He’s retaining most of the syllables he’s picking up, which is wonderful. I know it’s not uncommon for kids with apraxia to have ‘lost speech’ problems, and that seems to be the case with him.

For example, about a year or more ago, he said ball (’bah’ or ‘bah-bah’) and duck (’duh’ or ‘duck’ with a very soft ‘ck’ on the end). After doing that for a while, we haven’t heard them much at all since, nor anything else that starts with ‘b’ or ‘d’. One of our therapists said that speech for kids like him has a hard time “locking in” and that this will happen.

Instead of thinking of it as having speech and losing it, it made a lot more sense for his therapies to look at it like him maintaining this sort of Law of Conservation of Total Syllables. On the whole, his total number of syllables remained about the same or increased very, very slowly, but I wouldn’t say he ever regressed for any length of time. This helped us chart his progress better and stay more positive about it. That whole situation was weird to us, but the apraxia diagnosis made sense and still does.

One things he’s done for a long time that is both fascinating and frustrating is that he will out of the blue say a syllable he rarely if ever says (like ’sh’ or ‘ffff’ or ‘ts’), will do that for a minute or less, and then we won’t hear it again for weeks. Apparently this is also common to kids with apraxia, which is itself common for kids with an ASD.

As our readers likely know, we’ve been giving him fish oil for about the last two months. Within the last couple of weeks, we’ve seen marked improvement with his speech. As I said in my last Omega-3 Watch post, I hesitate to put those two sentences together as I have no hard evidence that the fish oil caused the improvements. We have also been focusing on speech therapy intensely at home during that time, and that (or both) could be bringing this about. We don’t know, but we’re going to keep doing both.

What I am convinced is helping tremendously is his patience level. As we’ve been able to withhold things he wants for longer periods of time until he asks for them in some (or any) verbal way, his speech level has improved drastically. It used to be that he would fall apart a half-second after you held something back from him. As that time got longer, things got easier, albeit with not a lot of speech improvement. In a few seconds, he would just get so flustered that we’d lose him. It seemed to me that he was so frustrated that he couldn’t say the word that he got upset.

As his ability to tolerate this withholding has gone up and his patience with himself has increased, this process has gotten much easier. They told us a year ago that this would be the cornerstone of his speech therapy; he had to be willing to be patient and have the ability to tolerate frustration to have a breakthrough. They were right.

They’re basic line: “He has to be ready to do give-and-take or else speech therapy won’t help.” Yep. And all that effort we’ve put into accomplishing that has really paid off.

Here are past and present examples.

Before:

Me: Would you like more to drink? (pause a second and withhold the cup)
J: (nothing, but is looking at me)
Me: More? (pausing a second or two)
J: (nothing, but looking more distressed, maybe reaching toward the cup)
Me: Can you say more?
J: (getting more agitated, whining, no words)

Repeat this a couple of more rounds and he’d get upset and whiny without saying anything word-wise.

Now:

Me: Would you like more drink? (or more cup) - pause a few seconds.
J: (looks at me and the cup but may not say anything in this round)
Me: Do you want more cup? (pause a few more seconds)
J: (Looks for a couple of seconds, then) Mo-mo. (what he says for ‘more’)
Me: More what?
J: (readily says) Kuh-kuh. (what he says for ‘cup’)

Then he gets the cup and drinks. That exchange probably takes about as long as the first one, but he’s expressed his needs verbally, gets what he wants, and we go forward and keep eating.

Interestingly, if he doesn’t really want more of something, he usually just refuses to say it.

This is a quantum leap forward for him.

With apraxic kids, the ability to have your own parental self-control and patience to wait calmly along with your child’s ability to be patient enough to plan out the words and talk are crucial. Our natural tendency is to repeat things quickly or give in. It’s hard to fight that, but J-Man has done much better if we give him several seconds or even longer to think about what he wants to say and plan out how to say it. Now that he’s patient enough for that and we are too, things are going more smoothly.

The benefits of this are carrying over to other therapies as well, so this has been a real positive for him. Yay, man!

Little Man has decided that the WORD for cheese toast is Coco. He can’t say a “t” you understand. He walks over to the counter where the toaster oven sits, and says, “Coco.” That’s right, he SAYS it. Just to make sure I was understanding correctly the first time, I asked him if he could point to the picture of what he wanted… and he ran over to the food pictures posted in our kitchen, and pointed at the toast, with his index finger. Then I fell over into a dead faint and he revived me by sloshing cold tea onto my face and yelling, “COCO!”

For those of you not in the know, index finger pointing is very difficult for the J-Man, and for many autistic kids. They just don’t understand that the finger is pointing towards something. Lately we’ve had index, middle, and thumb pointing. As long as it’s not middle finger pointing at me, I’m for it. I still get him to point at the picture of the cheese toast, just to reinforce that the picture board is another way for him to communicate.

There have been a few days lately where J-Man has had 3 pieces of toast in a day, because I’m so thrilled that he’s asking for something so clearly… and I can’t NOT give it to him. He’s become quite the toast stealer in general – if I have toast for breakfast, I should just go ahead and make an extra piece because I know he’s going to take one of them. Me: “What do you want to be when you grow up?” J-Man: “Coco stealer.” Me: “Getting a head start on it I see…”

And for your listening and viewing pleasure, Heywood Banks and “Toast”:

[ed. Hard drive meltdown = no blogging. Ack!]

We’re behind on Omega-3 / Fish Oil Watch posts. It’s been a rough couple of weeks, as we’ve covered.

I put ‘Talking’ and ‘Omega-3′ together in the post title with no small amount of uncertainty as implying that they are related may be a very big leap. I have no idea. I am not one to attribute improvement to any one thing with certainty without hard data to back it up. And in this case, I don’t have any data to support that his speech improvement this week has anything to do with his Omega-3 / fish oil for the last few weeks, so take it for what it’s worth.

Last night he had the best string of speech and communication we’ve gotten in forever, and that’s saying something after the great week we’ve had. This has definitely been his best speech week.

Last night - without any prompting from us other than “What’s this?” and some pointing - he identified his nose, mouth, eyes, neck, and ears, all right in a row! It was ‘no-no’, ‘mow-mow’ (rhymes with ‘cow’), ‘eye-eye’, ‘neh-neh’, and his version of ‘ears’ that is consistent but pretty far off from the actual word, but it was clear what he meant. Yes!

Then came the big finish. Clear as day, “I love you.” (’I-luh-you’) After a rough day with a melted hard drive and an endless string of personal and work crap to deal with, what an incredible gift! He pretty much melted me where I stood.

I’ve read several books on speech and speech therapy, and I’m not a bit surprised that the goal of many parents in situations like ours is to hear their kids say, “I love you.” It’s impossible for us to take anything like that for granted every time it happens. J-Man has been walking for about eight months after not doing it for almost two years, and I still feel joy watching him run. I know how hard he’s worked at everything, and every little thing is still an achievement even after he does it a few hundred times.

I’m writing this and I still get choked up about it. I am so proud of him!

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

Honestly, if we could figure out a way to use human gas as an energy source, the Flashlight household would never have to pay for electricity or auto fuel again. The J-man excels at passing gas – both loudly, and the silent-but-deadly (SBD) kind. His favorite time to use the SBD weapon is when I’m rocking him and he’s nursing before bed. He turns on his belly and turns his head to nurse, hunches up his little behind… and then it hits me. There have been times that I gagged. For a child who eats next to nothing some days, he can sure be a little stinker! Then, he laughs!

Today’s word was a variation on a previous word of the day: GaGoMaMo – which for those of you who don’t speak J-man-ese, equals, More Go Mama. I heard it a LOT when J-man was out on the swing for an hour this afternoon.

The cough and congestion seemed much worse this morning, but then seemed better this afternoon. He’s still eating very little, and not wanting to eat nuggets at all, so I’m wondering if his throat is hurting. Again, now would be one of those times when you desperately want your child to speak!

As a personal aside, I went into work last week to help out my old team. Annoying Coworker was there, and for some reason feels the need to ask me if I really disliked him when we worked together. He asked me this when we were still working together as well. The answer hadn’t changed… He truly seemed shocked when I told him that I thought he was annoying, and that he seemed to spend a lot of time trying to get under my skin. There was a time when I would have tried to “help him” understand what he had done, but you know, he’s 35 years old. If he hasn’t gotten by now that most women hate sexual innuendo and being told they don’t actually understand what feminism is all about while trying to work on a team of 95% men, he’s not going to get it. So, no, I didn’t like you then, and I don’t like you now. This isn’t going to change!

J-Man has always been a music lover. For a long time, it was the only thing that would help him calm down and relax when he was upset or couldn’t sleep. Singing still helps with certain things, like attempts at teeth brushing, but songs or anything lyrical (like Seuss books) also help engage him into paying attention and doing a little talking.

We have a ridiculous number of music channels on our digital cable. One of them was playing James Brown’s “Living in America”. I would imitate (badly) James Brown’s trademark “ow!” and Little Man started saying “ah-ow” after me. We had a blast! Then came some serious father-son bonding.

The next song was “Brickhouse”. I would sing “Brick! duh, duh, duh, duh… house!” and he would say “ow!”

Mary was in the kitchen rolling her eyes. I was in the floor howling. J-Man thought the whole thing was hysterical. Now all I have to do is say “brick” and he busts out laughing.

There are days you’ll do whatever it takes to get your kid to talk. Might as well have some fun doing it.

Ow!

Because I am a nerd and go in and read Tim’s posts, I went and read Amalah’s blog too, and found this piece that resonated with me.

This was the part that REALLY says what I am thinking.

You know why I’m afraid of autism? Of delays and labels and illness and stuff that just ain’t right with my kid?

Because I am afraid of myself. Of what I am capable of, of what I can handle, and that it won’t be enough. There.

Well, that, and the whole “I wish everything wasn’t so hard for him” thing.

He tries so hard to communicate without words. Now, when we say, “I love you” before bedtime and try to get J-man to say any part of it back, he kisses us instead. And kisses us. And kisses us.

I love you too, Little Man.

The word of the day is MoGo. That’s really two words. It’s a two-word sentence, asking for More of Ready, Set, Go!

My son used a two-word sentence! In response to the question, “What do you want?” when he was in his swing (see the pictures from Tim).

It really is the little things that make parents smile. I know there are a lot of parents out there who think something like “MoGo” isn’t anything to write home about – or to blog about.

It totally is.

MoGo. Word of the day!