Tuesday we tried something with J-Man’s OT called “Therapeutic Listening” (officially, it’s a trademarked term by somebody). You may have come across this under terms like ‘auditory therapy’, ‘auditory training’, ‘listening therapy’, and a host of other terms. I don’t understand how all this works very well at all, and there are different approaches to make things more complicated in learning about it. Here are some sites that give you an overview. I’d suggest reading them in this order: Vital Links (about Therapeutic Listening ®), Tomatis, Berard AIT, and Samonas (whose website layout is a mess, but that’s another matter).

From what I gather, the above methods vary some from one to the other. The following describes what we did for Therapeutic Listening on Tuesday. Any similarities between my description and the actual science and technical bases for any of these methods may be pure luck on my part. Like I said, this is new to me. It’s the end result that left me astonished, and plenty fascinated to learn more about this.

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As you transition from Early Intervention to your county school system’s services and preschool programs, there comes a time when you have to subject your child to a bunch of evaluations in order to determine his or her eligibility for services. Yesterday was our turn.

I should preface all this by saying that this sounds like things are worse than they really are, though there have been a number of issues to be sure. We’ve been frustrated, and that’s been made worse by us just being plain exhausted lately.

We haven’t exactly made it a secret that we haven’t been particularly enjoying this process. Early Intervention was a lot more laid back for us. One thing we’ve learned is that getting specifics from anyone in the IEP development process is a chore. (link to Wikipedia for those who don’t know what this is) There’s a straightforward enough explanation for this. Anything they say could be used against them at a later date if a child doesn’t get the services the parent wants. However, when all that butt covering gets in the way of actually getting any real information about what is going on, I don’t give a rodent’s posterior about one’s need to keep one’s legal issues covered.

So we’ve had to push back - not hard, but we’ve been firm about some things. Reading the tea leaves, it appears that our concerns were escalated to the next level up. This has led to a lot more clarity (at least on our part) and a sense that we’re all on more equal footing, which is how it’s supposed to be.

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I’m one of the first people to encourage other parents to chuck the milestones books out the window. The ones that tell you what your child should be doing at 75.34 weeks to me do little except make you increase your antacid budget every month. The obvious exception to this is that if you suspect that your child is very delayed in one or more areas, go figure that out both through reading and with your pediatrician and other professionals. There’s a big difference between being 1.8 weeks behind and 18 months behind.

This is probably a blinding flash of the obvious for parents of kids with delays, but after a few months in Early Intervention and therapies and whatnot, you completely lose touch with what ‘developmentally normal’ is. It really is a time warp. At this point, I would have a hard time telling you how far behind our son is. We’re doing things on J-Man Daylight Time and ignoring how most of the rest of the planet tells time. He’ll do it when he does it, has become our motto (at least on our good days).

With J-Man showing some exceptional skills in some areas in the midst of being very delayed on most everything else, we’ve felt the need to go back and figure out what ‘normal’ is for an almost-three-year-old. At a parenting level, I’m not sure how much I’m concerned about this at this point. Like I said, he’ll get there when he gets there, at least I keep telling myself that. However, for purposes of getting him into preschool and doing his IEP, we need to get some handle on where he is (that Present Levels of Performance thing - with the wonderful acronym PLOP).

It’s hard to find to milestones charts that translate well into autism-ese. The obvious problem is that your autistic toddler could easily be two or more years plus or minus what is developmentally ‘normal’ for a three-year-old on these charts. He or she will likely be scattered all over the chart. You have to transpose quite a bit with them, but after thinking through it a bit, I still could get a rough idea.

At the bottom of this post are some links I found to help us get started. Hopefully they’re useful to you as well. I can’t vouch for their complete accuracy or anything, but they’re consistent enough with each other for what I was looking for.

I did discover that J-Man’s letter identification is probably on par with a level of 4-5 years old (he’ll be 3 in a couple of months if you just got here), just minus the ability to say some of them. If he’s in a relaxed state, he can point to any letter you ask for. Lowercase still confuses him for a good half of the letters, but that’s understandable. He’s getting there with numbers and has consistently identified five colors (again, when he’s in a relaxed state). With colors, I usually give him three to choose from (solid-color, construction paper squares) and ask him to point to ‘red’ or whatever. If he goes 10/10, he’ll get the proverbial gold star and we’ll start trying to identify colors in other contexts.

[Worth nothing that if you say something like "point to the green frog" he just stares at the floor. Combining a color and an object - 'green frog' - is too much to sort through as he has to figure out what's green and what's a frog at the same time. So, we just do "point to green" at this point.]

The key is the ‘relaxed state’. If he’s calm, he can do this stuff one to two years beyond age level. Otherwise, it’s a lost cause. Hitting that sweet spot is hard, which is as much the battle as anything. This is totally a sensory processing issue, which we’re working on constantly.

OK, enough of my rambling on. Here are the links I stumbled on. These center on speech, language, and literacy milestones. If you know of others, let us know.

http://www.capitolent.net/speech-milestones.htm

http://www.horizonspeechcenter.com/milestones.html

http://www.madison.k12.wi.us/tnl/lilm/early_literacy/preschool/milestones3-5.html

http://www.childcarelounge.com/articles/xlearningleteracy.htm

We got through it. Anything that can be described like that is a victory.

The dentist was really good. Turns out his wife used to work for the doctor who did the autism evaluation, hence the referral I assume. Regardless, he was calm, skilled, listened to us, understood the situation perfectly, and best of all, was quick. Can’t beat that!

I rarely drop the word “autism” into a conversation with a stranger about our son unless the conversation is actually about that. People’s automatic prejudices about that really get to me and only serve to piss me off, and if he’s acting a bit destructively - which is rare - I don’t want to be one of those parents who makes excuses for their kids. If I’ve heard “Oh, he’s just that way; he has ADD” while their child is rampaging around the playground knocking kids down and taking stuff from them, I’ve heard it a thousand times. I don’t care if J-Man is autistic or purple; I want to have the same boundaries and rules and expectations that I hope other parents have for their own.

He jogged laps around the waiting room and entertained everyone. He did many of his usual array of things others may find quirky, but since I find them endearing, I had a great time watching him. There was a ramp into the kids’ play area that he would take a step up, change his mind, and come back down. He did this at least two dozen times. He has this thing about inclines. He’ll do steps now with some help, but put a ramp in front of him and his wires seem to get crossed sometimes. He was his usual cute self and everyone responded accordingly, with adoration of our son like they’re supposed to.

That preamble has a point. I figured they had a “special room” at the dentist’s office somewhere. The office is enormous and there’s a fairly open area with dentists’ chairs all over the place. I knew we’d have to do some wrestling with him to get this done and I’d rather not do it in public, freak him out even more, and then freak out the other kids - many of whom were very young and a couple who looked like it was their first time at the dentist and wouldn’t understand why this boy was screaming while some large adult (namely, me) was piled on top of him. So I sprinkled “autism” in a couple of places during our initial conversation with the hygienist. We got the “special room”. I usually don’t work a conversation like this, but it turned out to make life much more manageable for everyone.

The hygienist made little headway into checking his teeth so we all waited on the dentist for a few minutes. Singing and letting him explore the common area helped him calm down and pass the time. He never sits still in a new place so we let him work off some of that until the dentist was ready. He talked to us for a few minutes about concerns we had, was very understanding, knew completely what to do, and generally made us all feel better. His usual bag of tricks (e.g. show the kid the little dental mirror and let them play with it before using it) was pretty much pointless, but I appreciate the sentiment. J-Man was in the process of going over the edge at that point.

Like everything else, the winning plan is to be quick. I sat him in my lap facing me, then we tilted him back with his head into the dentist’s lap, Mary took one arm and the hygienist the other, and the dentist worked his magic. He managed to get a good visual exam in during all the commotion. Good for him. Verdict - no problems with his teeth!

He did have some staining on his upper, front teeth, mostly because all he’ll drink is iced tea. The dentist said a little pumice on the rotating brushy thing dentists use (no clue what it’s called) would clean that right up. It would take about 30 seconds. We figured we could survive anything for that long and it would look a lot better. So, we decided to do it.

Reinforcements were waiting by the exam room door (an extra hygienist if needed). I literally laid across him (useful side effect is that deep pressure helps) to hold his body and feet, everybody grabbed an arm, and 30 seconds later, voila! He got some serious crud off. Ewww. Verdict - Stain gone, everyone survived, good enough.

J-Man recovered well (which is normal for him). I held him and walked him around for a few minutes and we sang a few rounds of Old MacDonald. By the time we got to the car, he was pretty good with life again. He was pretty subdued, but an OK kind of subdued.

Some things we learned:

• Preparation is 9/10 of everything. We tried to get mentally and logistically prepared before we even got there. We planned the whole day around it, timing meals, giving him some extra chill out time, letting him watch a little extra TV, lots of loving attention, etc. Best call of the day - put the soft shoes back on in place of the big boy shoes in case he kicked because they hurt less!
• Learn from prior meltdowns and keep trying to figure out the best way to get through something like this. Fifteen progressively worse haircuts were great lessons. Still, probably a lot more we can learn.
• Skilled, understanding professionals are worth their weight in gold. They really made it as easy as they could. Again, speed is everything.
• Ask around, get referrals, ask around some more. This is going to be stressful, shopping around for the best person is worth the time. We relied on the referral of someone we trusted and it worked out well. We will definitely be going back there.

Final financial damage - $68, and see you in six months. We’ll take it!

I claim my own sensory issues. I really don’t like dentists. I’m being very diplomatic in saying that. If J-Man takes after me, the end of the world may be nigh.

So, now we have to take him to the dentist tomorrow for the first time ever. It originally took months of therapy just to get him to let us near his mouth and to eat table food of any kind, then it took us months to get him to let us into his mouth with spoons, washcloths, etc., and then it took a while to get him to put a toothbrush in his mouth. He still fights us brushing his teeth with a brush (we usually use a textured washcloth), but he will sorta brush his own teeth with one (emphasis on ’sorta’).

So, we know his teeth need cleaning. He seems to have an overbite too. Nothing good can come of this when a dentist gets involved.

Autistic kids often have problems with their teeth, primarily because it’s hard to negotiate with a kid about dental hygiene when having someone pillaging around in their mouths when they’re sensory-sensitive anyway isn’t really on their favorite activities list. It’s not like “go get your toothbrush and brush your teeth” is a practical course of action either at this point.

Here are some other things compounding the problem.

• Our dental insurance has no pediatric dentists in network. How dumb is that? So, this is out of pocket. Great.
• I fully expect him to fight to the death in the chair. Remember, this is the kid who required five people (and me of 225 lbs practically sitting on him) plus an entertainment committee and his favorite video to sort of get his hair cut. This time some stranger is going into his mouth with shiny, sharp, scary-looking instruments. You must be joking.
• Distractions are pretty much useless with him after a certain point. Once he slides past that point of no return, ain’t nothing you can do to get him back except wrestle or take him home. In really stressful situations, honestly the distractions don’t much work regardless. It’s more how long you can delay the inevitable.
• I also fully expect them to give up and say “you’ll have to come back and we’ll need to sedate him. By the way, go ahead and leave your wallet with the receptionist.”
• I personally hate dentists. This does not give off good vibes to J-Man I’m sure.
• It never gets easy watching him go through something this hard on him. It kills me every time.
• If he has cavities, I may start drinking heavily when we get home. There’s a ‘package store’ two exits before ours.

The one good thing - the doctor comes recommended by the person who did his autism evaluation. So, let’s hope for the best.

Urf. We’ll let you know…

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!

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.

Today I went to the doctor because I’m still tired, and not really able to concentrate, and have no stamina, and have NO initiative to either start anything or finish whatever I feebly started.

She told me to eat right, exercise, get more sleep, and take time for myself. I wanted to cry right there in the office. I asked if there couldn’t be a drug for me - she said that drugs were a short-term solution, and that I needed to look at the long-term and take better care of myself physically, or I simply wasn’t going to get better. I told her what my day consists of, and how there isn’t time for me to do all those things. She said I would have to make time. Uh huh. She suggested I hire someone to do the stuff that takes up my time, because “since you don’t do anything except work, you must have all this money sitting around.” No really, she said that.

So J-man, instead of working with you in the evenings, and instead of cooking, or doing laundry, or whatever, I’m just going to take that time for myself. Instead of paying for (I don’t know) our mortgage, and car payment, and Tim’s student loans, and therapy bills, and utilities, and groceries, I’m just going to hire someone to be my personal servant.

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!

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!

[This unintended blog hiatus has been brought to you by a dead Western Digital hard drive. Thank you... Now on with the show via the second-string computer.]

Well, we got the autism evaluation report back yesterday, and while the official-ness of it is still hard, the report contained no surprises.

(For some background history, read “Autism Evaluation - Round One” and “Three letters that change your life”.)

As we’ve said before, the evaluation was done in two parts: an interview with just Mary and me, and then an evaluation with both J-Man and us. In the final report, he scored above the autism threshold in every area.

There are two things worth noting here.

1) Since J-Man’s only 2 1/2, the doctor said he doesn’t assign degrees to evaluations at that age. So no “mild”, “moderate”, etc. in this report. I think that’s fair. It’s just too early to get something like that. We understand that.

2) This doctor doesn’t give out PDD-NOS as a diagnosis. I respect that. Especially at this age, PDD-NOS is like saying, “hell if I know?” In his opinion, either you’re above the threshold or you’re not. There’s no “kinda” in this case. I appreciate his willingness to take a firm position and not leave it hanging in the air.

For people hedging on shelling out the money for a private autism evaluation, here are some of my brief thoughts after a day’s worth of hindsight.

• I feel like we got our money’s worth. We paid $1,400 for five hours of evaluation, feedback, and question time, so at that level of money, that should tell you that I was satisfied with the quality of the expertise we got.
• I feel like the report is an accurate assessment of where J-Man is right now. I also believe the report was well-written and will be just what we need when his IEP time rolls around.
• The doctor was straight up with us, and I appreciate that. I didn’t want to hear the outcome, but he was direct and honest with us. As we make our peace with it, that will help J-Man get what he needs. In the end, that’s what matters.
• Getting an impartial, outside opinion was essential - something we understand much better now than when we started this part of the process. Mary and I, our families, his therapists, our friends, and everyone else we know are just too close to him and us to give that kind of honest, impartial evaluation and opinion. Going completely outside that to get an unbiased, straight up opinion was completely the right decision.
• The report doesn’t change a damn thing about how we feel about him or look at him. Instead, we love him even more - how is that possible? - for how bravely he has faced his challenges so far. And that makes us more determined than ever to do everything we can to help him be the best person he can be.

Final verdict - if you think something is going on with your child, do what we did and get an evaluation. What you get out of it is an investment in both the short-term and long-term future for your child and your family.

I’m still working through a LOT of emotions about all this, but I feel strangely calm at the moment. This has been a rough few weeks, and sometimes I feel so tired I can’t focus my eyes. I’ve spent a few nights in bed staring at the ceiling, feeling panic coming on. I’ve been all over the place with it. I may feel determined, but that doesn’t mean I don’t have enough anxiety to kill an elephant sometimes.

That’s the news for now. More in the coming days and weeks, especially after I get my real computer back…

[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!

(Buckle in. This is a long one.)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We have a diagnosis - ASD.

As our readers know, we had Jonas’s autism evaluation yesterday and the doctor didn’t even need to score the evaluation to tell us that Jonas has an autism spectrum disorder (ASD).

That spectrum includes a wide and diverse range of things so the more exact diagnosis won’t be clear until we get the full write-up back in three weeks. Given the discussion at the end of our appointment, it appears that we’re looking at something significant. Either way, the wait is pretty much over.

I want to believe it’s inaccurate, but the rational part of me knows it’s correct. I know I’ve been in denial for a while. I didn’t want to believe it, and I still don’t. Jonas didn’t much care for the evaluation, but I thought it was still a fair snapshot of where he is right now. I have enough confidence in the doctor to believe his assessment is medically valid.

We’re not really in the right mental place to talk about this yet. At one level, nothing is any different than Tuesday. He’s still the same, wonderful, beautiful, life-filled, wondrous boy he’s always been.

The reality is that the road ahead looks a lot more uncertain. Yesterday was a very bad day. I went to Barnes and Noble this morning to do what I do to cope with things like this - I bought books about autism. I sat at the reading tables and looked through them. It was all I could do to not start crying again. And I do mean again.

That said, I know we will be fine. We just need to process this for a little while.

To all those who have supported us and continue to do so, we love you.

That’s all for now. More to come.

J-Man’s autism evaluation is tomorrow morning. My brain still hurts from the preliminary conversation we had today with the county about his transition from Early Intervention to preschool in six months. I don’t even know where to start with the fire hose of information that entails.

In any case, time to switch gears to our big day tomorrow. What we’re hoping for tomorrow is an evaluation that accurately describes where he is in his life right now so he can get whatever he needs to be the best Little Man he can be. We have confidence in the evaluator; our hope is just that he feels comfortable enough to be himself during the evaluation. He really struggled with the Early Intervention evaluations, but those were some time back and with evaluators we had less confidence in. Hopefully this one will be easier for him.

He gets frustrated with himself pretty easily now, though, and watching your child struggle through that is one of the hardest emotions a parent can bear. If you’re going through this, you already know what I mean. And you also know how much you or I would do if we could just carry some our children’s struggles for them, even for a little while.

I’ve said this to our various evaluators and teams before, and I think it’s worth repeating here. When we get the results of an evaluation, we don’t want to think we know; we want to know we know. I know that’s a lot to ask at this point, but it’s the standard I’ve set for us to work toward.

I know the reality is that there’s a lot of educated guessing at this stage. It’s the professionals who admit that and make their best call from that who I respect. It’s the ones that swoop in for an hour and pronounce judgments who I don’t. We have plenty of reason to believe that tomorrow we’ll be getting the best possible evaluation we can get at this time.

In three weeks, we’ll get the results of tomorrow’s session. That’ll be a long wait. It’ll still be a relief to get to noon tomorrow and have this behind us. We’ll cross that next bridge when we get there.