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!

[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!

Already we have had people suggesting that J-man go on a GFCF diet (that’s gluten-free, casein-free for those who don’t know). Well, here’s the thing… if we started such a diet:

1. J-man would have no protein, because the only protein he DOES eat is chicken nuggets twice a day (hence, breading) and his daily cheese toast at breakfast. Gluten? Check. Casein? Check, check.
2. The few vegetables he eats (which are actually soups from the Earth’s Best organic line of baby food) contain both wheat and dairy.
3. I would also have to go completely GFCF as well, since J-man is still nursing. We’ve done dairy-free before (and it’s way harder than you would think to find food that is truly dairy-free). We’ve done soy-free, dairy-free, which makes it even harder. Rice milk anyone? (Only drinkable if it’s extremely cold, and even then it still smells like rice. Insert the blech emoticon here if you wish.)

We did all that dairy/soy-free for 3 months trying to figure out if J-man had some sort of dairy/soy sensitivity, back when the only thing we worried about was his eating habits and reflux. Guess what? Neither helped. They didn’t help his reflux, and didn’t change his behavior.

So, unless someone can find me a chicken nugget without gluten or dairy that also tastes and feels exactly like Tyson… we’re going to go forward without this one. Unless we can find bread that tastes and feels exactly like Nature’s Own Whole Wheat Bread, and cheese that tastes and feels exactly like premium American cheese (NOT the “cheese food,” people, the cheese), well, we’re stuck.

(Buckle in. This is a long one.)

One thing we’ve already figured out is that once you get an autism diagnosis, whatever the secret code is for the Autism Parents Underground Society gets embedded in you like the security tags they use to keep you from stealing stuff from the store. The big positive with that? You start getting helpful information from people who have been down the road you’re on, instead of just getting information about autism from TV, well-meaning friends and family who also got their information from TV, or Tom Cruise.

Our driving principle: Do whatever it takes for J-Man to realize his full potential and be the best little man he can be, but do so armed with all the possible knowledge and wisdom and feedback we can stuff into our brains. This may mean that he ‘loses his diagnosis’ someday, or it may not. Whatever that will look like eventually, we want to help him discover all of his gifts and talents and loves and then express them as far and wide as he can. This means we have a lot of work to do, and there’s no shortcut to it.

You quickly learn that there are a lot of debates in the ‘autism world’ that remind me of philosophical or religious debates where people argue endlessly and stop talking to people who don’t agree with them. It’s like watching another form of religious fundamentalism.

A few people I’ve met are getting more invested in movements and doctrine than their own child. I understand the emotional investment parents have in their children’s improvements - and thank God for it - but right now I find all of this debating a distraction. If you want to argue cures vs. neurodiversity, that’s fine. Just do it somewhere else for right now. None of that means jack to me when my son is flapping his arms like mad in the back seat of the car. Luckily, the number of people I’ve personally come across in this category are in the minority.

We’ve been reading and researching for two years about feeding issues, sensory integration disorder (or sensory processing disorder depending on who’s talking to you), physical therapy, reflux, speech delays, apraxia, and every freakin’ therapy you can think of around them. This has been great practice for discerning what therapies and ‘cures’ for autism have some potential for success and which are pure excrement. The latter looks to be winning in a rout at the moment, but that’s another story.

Thankfully, the anecdotal suggestions from strangers (”We know a parent who had their kid piss into a strong, North wind every morning for a month and got him cured!”) has been pretty minimal so far. We’ve developed pretty good BS detectors, which is one of the most important skills for a special needs parent to have.

I also classify certain therapies under the heading of ‘well, it couldn’t hurt’, so I’ll try some of them even if some seem a little odd. I’ll give serious consideration to many diets, vitamins, or supplements, even though we’ll do a lot of research into them before we dare try them with J-Man. This will likely mean we’ll dismiss ones that seem invasive, dubious, completely unproven and untested, and anything else suspicious.

I’m skeptical of many vitamins and supplements because, with all of my own ‘issues’, supplements have at best made marginal, imperceptible, or no improvements for me. None have caused me any real harm as far as I can tell, so there was no reason not to try many of them. A couple made me sick to my stomach for a couple of days, but that was about it.

There’s a whole lot of stuff in the Whole Foods home chemistry aisle that appears to lack everything but a salesman on a soapbox. You can’t easily tell what really could be helpful and what would be more cheaply achieved by gnawing on an Amazon.com box. Again, you gotta research. There are no shortcuts.

There’s a lot we don’t know about how supplements work, and some of the ones that involve some fringe-sounding stuff may cause problems for little people with developing brains. If they’ve been tested for all of about a day and a half on ten kids, you have absolutely no idea what good it could do, not to mention the possible long-term harm. You have to read, talk to people you trust, read some more, and then decide.

To me, one of the best ways to do your first pass at weeding out options is to look at two pieces of information about these or any other therapies: 1) Has it been tested on a sample size of more than three neighbors’ kids, and 2) has it been around for longer than a five minutes. Not to be overlooked: Does the person advocating it have a financial stake in it? That should eliminate about 3/4 of the possible therapies right there.

Notice I never said, look for studies where the scientists have medical degrees and lots of acronyms after their names. There may be all sorts of correlations between therapies and improvements in autistic kids (we’ll do ‘correlation vs. causation’ some other day), but degrees and acronyms isn’t one of them. I may not know a whole lot yet about therapies specifically for autism, but I’ve been researching everything else for two years and much wisdom and common sense carries over. The biggest difference is that our emotional investment in improvement is even higher than before, and that’s saying a lot.

Just to be clear, I’m not saying none of them work; I think it’s safe to say that some of them do help at least some kids. I’m saying that I begin with healthy skepticism and then work toward being convinced or unconvinced. I’m not sticking any old thing into my kid’s body unless I have some sound evidence that it might help and it won’t hurt. There’s at least a “first do no harm” principle here.

Some therapies really intrigue me and seem worth a try. Music and auditory therapies might work well for J-Man because he’s such a musical kid. I couldn’t carry a tune in a bucket, but my iPod is like my portable therapy device, so I won’t discount the value of it even if I have no clue how it might work for him.

His OT is trained in one kind of auditory therapy so I’m interested in giving it a try. Getting him to wear the headphones might be the hardest part. Again, this falls under ‘it can’t hurt’. Currently, insurance and Early Intervention are financially supporting much of this part of the effort so now is as good a time as ever to try something like that.

It’s that and we’ve learned that we can truly trust his therapists and preschool teachers because they are smart, caring, and always have J-Man’s best interests in mind. If they tell us something is worth trying, we’ll listen. The best thing you can do is develop a network of professionals, family, and friends whose advice you trust and know is sound. They will help you separate the wheat from the chaff better than just about anything.

All this is to say, we’ve learned a lot over the past two years about how to sort out much of the snake oil, ‘breakthrough cures’, and outright loony crap from the stuff that has some reasonable, scientifically-based chance of working. I’ll even go as far as to say that anything that is sold as easy will be struck from my list of things to try. I’ve learned in life that there are rarely any shortcuts.

I wish there was an autism Santa Claus, but I know better. It’s depressing, but I know I have to make my peace with this.

For someone who has been unable to sleep for almost two weeks, feels emotionally spent, and who thinks beer and ice cream sounds like a good dinner tonight, I feel oddly lucid and confident about our ability to differentiate between hope, helpfulness, histrionics, and horseshit. And the fact that I can string four h-words together right now just astounded me.

I know I haven’t talked about education, behavioral work, and the other therapies in the standard repertoire. I feel confident in the approaches we’re already taking and feel like we’re getting great advice on what else to try. I’m less worried about this. Perhaps I’m approaching this by weeding out all the junk first so we can see what our best options are. Distractions are my nemesis, and God knows there are a lot of them here.

And in case this point wasn’t clear - there are no shortcuts.

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

No, I’m not talking about Tim.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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