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

[I just got my computer back from Apple Hospital, so finally I can quit half-assing work on my 7-year-old, 12" iBook, workhorse that it still is. ]

It’s been a good day all around except for the ridiculous allergies we’re all dying from. Mary’s parents, sister, and her two kids are visiting. All that and the weather today has been the kind of achingly good spring weather that makes people love North Carolina, except for that whole pollen from hell thing.

Anyway, since I don’t have time yet to post anything terribly interesting while my main computer is restoring from backups, here’s a preview of a few of the major things I’ve been working on topic-wise.

* Book Review: Daniel Isn’t Talking by Marti Lembach - It was the first ‘autistic novel’ I’ve read. What a wild wide it was.

* Turning my two-year-old into a one person case study of an autistic toddler - I’ve joined the parental practice of everyone comparing their autistic children’s traits. In the “normal parent” world, people compare in hopes of proving their child is smarter than yours. In my conversations with other parents of autistic kids, it’s a genuine dialogue about discovering each child’s strengths and weaknesses and comparing notes on how we’ve helped our kids grow. It also gives you a brilliant insight into the diversity in the autism community.

Anyway - I wanted to offer my (very lengthy) description of J-Man using as an outline the most typical (and stereotypical) characteristics for those on the autism spectrum. Maybe you’ll see something in there that helps you understand your child better and you can offer comments on suggestions for us as well.

* How we currently use the Picture Exchange Communication System (PECS) to help us since J-Man uses very few words. If you don’t know what PECS is, you will soon. (or you can click that link)

To give you an idea of where we’re headed with this site, our plans are to add some of what we hope are useful resources to parents going through a variety of issues related to autism, apraxia, sensory processing, speech delays, and so on. We’ll try to keep these as practical as possible and give you our honest opinion about how well various paths and practices have helped J-Man and us.

We’ve been at this in some form for two years. One of the therapists said we’re getting to where we could teach this stuff at Continuing Education workshops. I tell her, we’re just really motivated parents. Maybe we have something interesting for you, and I’m sure you do for us.

We’re working on the technical parts of how to actually show you on video or photos some of what we do during the day with him therapy-wise. We’ll show some of our therapy gear and what all we do with it. This may help the visual learners see in action what they read about in books. That may turn into a shameless excuse to show off his speech progress!

Our big adventure is that we’re going to turn our formal dining room (which we use neither for dining nor anything remotely formal) into a learning and play area for J-Man. We’re basically going to turn it into something like a therapy room you’d see at a pediatric therapy office.

This is going to be fun, and our therapists are brilliant at coming up with entire therapy kits without ever leaving the dollar store. We intend to build something brilliant - mutli-sensory, structured, de-cluttered, but full of free, crazy, creative stuff and so much fun any kind would love it - all on a tight budget that hopefully others can work from for their own houses and kids. We hope you’ll find following that project from beginning to end as fun and useful as we hope for while doing it.

Of course, I’ll be fixing some of the design borkage on the site, increasing the width of the content column, fixing the tag cloud, getting a better banner, and much more.

More to come. We’ll be resuming our normal schedule shortly.

[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…

Dear Son,

How is it possible that you are our child? Just because you look JUST like me, except you have Daddy’s build (and bits), I still think maybe something happened at the hospital (even though one of us was with you the entire time, plus you had the baby lo-jack) and they gave us the wrong baby.

Why would I think that? You don’t nap. Mama and Daddy would kill for a nap most days, while you are quite willing to go weeks without napping. At this point I believe it’s been over 2 weeks since you napped. You just play in your crib, singing along to yourself and, as previously noted, chewing on whatever you can find. If Mama weren’t working, she would absolutely be able to nap while you were playing safely in your crib, but Daddy can’t. (Let’s face it, Mama is a champion at sleeping.)

Noggin is running a theme that talks about how much better the adult world would be if it ran like preschool. There would be naptime!

Anyway, please sleep so you aren’t cranky by 6:00 pm.

Love,
Mama

[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!

[Seriously. This is him standing here typing.]

Ll b

‘;.bh/.///.//,ju…hjum jb

y h nnmnm v c gm,. N b

nbhvhmnnbjjn v b b nb

So there.

Thanks to a UN Resolution (and props to the State of Qatar for leading the charge on this), April 2 will from here on be World Autism Awareness Day.

My first request would be to ask friends and family to observe today by becoming more educated about autism spectrum disorders (ASDs). The media have been cranking out human interest pieces about it for weeks and CNN - and perhaps others - are running comprehensive programming today about ASDs.

One thing to realize is that this is pretty much Autism 101 stuff, but it’s as good a place as any to start. Just keep in mind, sensationalism creeps into media reporting about autism just like everything else. There’s no substitute for researching, researching some more, and applying your BS detector to filter out politics and ego and separate fact from uncertainty from pure fiction.

Reading and research for us has been frustrating so far. There are so many agendas out there that finding good information upon which we can build a plan for J-Man is difficult. There is a lot of conflicting information out there. There is a lot of information based on God-knows-what kind of research. There’s so much the world doesn’t know that the vacuum is being filled by everyone with a theory or just plain wild ideas. The stakes are extremely high. As a result, it’s hard to know which ones to give more weight to than others once you get past the obvious bull.

Joining the ‘autism community’ has been like joining Christianity after living your whole life in another galaxy. It feels like people are dividing themselves up into denominations and beliefs about what causes autism and what will treat it or even cure it. Some hold on to these with the fervor of fundamentalism. This has been the saddest realization for me. We just want to help our son; we don’t need all this other baggage. And we don’t need agendas. And like Christianity, there are some things I don’t think these denominations will ever agree on.

So if I can put this forward for raising awareness, it’s that what you see and hear about autism is only the tip of a very large, very fractured, and very shaky iceberg. There’s no substitute for learning and time. It won’t fit into one day, but it’s a start.

Dear Son,

Yesterday we learned that putting you down to nap (HA!) without a shirt is a bad idea. We already knew that having you wear a shirt only results in you chewing it to the sopping wet point, and then being unable to sleep because your shirt is, well, sopping wet. Yesterday though, we learned that you were able to do something that we thought was impossible for everyone* to do - you tried to nurse from your own chest. The way we knew you had tried this? and tried HARD to do this?

You gave yourself a hickey on your chest.

While the point of hickies given by someone else has always escaped me (hi, you’re bruising me. Can you stop now?), I never would have thought anyone would do that to himself. It doesn’t seem to hurt you, and as long as CPS doesn’t come calling, nobody but us and the one other person who reads this blog will have to know… but seriously? Stop doing that!

Love,
Mama

*yes, yes, I know. I could probably do this. However, since I can also nurse around corners at this point, I truly don’t think I’m the norm.

What an amazing speech day! J-Man had his best speech therapy day by ten orders of magnitude. The last two days he has really been trying to communicate more and more, at a level he hasn’t in as long as we can remember.

One thing to note - his words don’t come out very clear and sometimes he substitutes syllables he can say in for syllables he can’t. The big help here is that how he does it is pretty consistent for a particular word, so we can pretty well figure out what he’s trying to say. The fact that he can adapt this way is wonderful.

Some words we got in some form just today: (our gold standard) more, more color (mor-kuh-kur), toes (sort of ‘ko-ko’, but imagine your tongue farther forward in your mouth), nose (na-no - or something close to that), lots and lots of ‘go’, nuggets (nyah-nyah), no (nah-nah), arm (ah-ar, with the occasional ‘m’ on the end), more cup (essentially more to drink - “mor-kuh-kuh”).

And then the big shockers. During speech therapy, he brought me a cereal box out of the recycle bin and handed it to me. I said ‘thank you’ and I swear to God what he said sounded like ‘thank you’ and then a second later ‘welcome’. I dropped the box and my jaw along with it. The speech therapist was at a loss for words, which is funny in its own right.

He’s been very good the last couple of days with his fill-in-the-blank practice, where we say some phrase or sing part of a song, pausing at some point to let him fill in the next word. This has been extraordinarily helpful to him and us, particularly so because he is much more patient when we withhold something he wants and wait for him to ‘ask’ for it, pretty much in whatever way he can.

We got ‘toes’ and ‘nose’ from “Head, Shoulders, Knees, and Toes” and ‘go’ from “Ready, Set, ____” Also, the fact that he’s waiting for the pause before he says the word is fantastic. He’s showing patience and understanding the cues.

I’ve also gotten ‘more’ plus a word in several different situations, which is just astounding progress. We’ve gotten more toast (or his approximation of it), more nuggets, and more cup just to name a few. He’s realizing what he’s accomplishing and is so proud of himself. He does the ‘victory dance’ (this wild stomping and laughing dance). I tear up every time.

He was so happy during speech therapy yesterday that he nearly fell over laughing. He got the ‘laughing burps’, which is a sign of happy times in our house.

He’s been trying so hard to repeat words we say. They may come out all wonky, but he’s trying his best, and we celebrate every little thing. The last two days have been like watching the sun come out after a very rough two weeks.

In short, it was a very good day!

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.

Ed. I don’t know what the First and Second Kinds of pillow fights actually are, but I bet they’re not as good as the Third.

In a sign of just how exhausted I am, the night before last, I woke up in the middle of the night with a survival-life-or-death kind of instinct that I REALLY needed to yank the pillow out from under Mary’s head and put it back again very quickly - think yanking a tablecloth out from under a bunch of dishes.

I have no earthly idea why I felt like I had to do this or what literally dreamed-up reason was behind it. Apparently, according to Mary, I did it with speed and agility not normally seen in someone who is 99.99% in deep REM sleep.

Mary - whose what-the-hell reflex augmented the sharpness of her memory about this whole episode - says I yanked the pillow out and put it back so fast that her head didn’t have time to fall back down again before I’d stuffed it back under her. I couldn’t do this awake if I tried.

The scary thing is, I actually remember doing it, and then trying to explain to Mary what in the hell I was thinking. I’m sure I made up an eloquent and well-reasoned argument for it, but the obvious truth is, I have no freakin’ idea.

Other than I’m so tired right now that I can doze off while walking.

J-Man uses very few words, and most of those are his version of them. One on-target area of his development for a two-year-old is the ability to say ‘no’. Generally, it comes out ‘nah-nah’, but you don’t need a speech therapist to figure that one out. He’ll occasionally throw in some head-shaking for good measure.

Admittedly, he does tend to say it after we tell him to stop doing something he really wants to do - like trying to erase programs off of our DVR - and often includes some devious grinning to let us know that his inner-stinker is alive and well.

‘Yes’ involves sounds he currently can’t make. He doesn’t ever nod his head either, and sign language is pretty much on par with Sanskrit for him at this point. But he’s learned to compensate with various other forms of basic communication, at least to get across the most essential stuff. This is particularly true for anything he REALLY wants to do, which includes anything outside (spelled O-U-T in all adult conversations in our house) and anything related to Signing Time or Wonder Pets.

This is a new one, though, and it gets me every time.

Me: Do you want to go out in the stroller and walk with me?

J: *kiss*

Me: *reflects on how cool it is to be a dad*

So, he responds affirmatively in the most affirming way he knows how. How cool is that?

Today was one of the few days per month (yes, I said MONTH, people… er… person) that I have to go in to the office. It means I have to wear pants (instead of jeans, you weird people who think I work withou… oh, right) and I tend to try to look nicer by straightening out my hair and wearing make-up.

So I had to get up at the ass-crack of dawn instead of just the plumber’s crack that all women who wear low-rise jeans get whenever they sit down. That was harsh.

The rest of the day though? It was lovely.

My team and I all collaborated on several issues, and it was nice to be able to work with people who don’t feel the need to constantly one-up whatever it is that you are saying/doing. We also documented some highs/lows from the past two weeks, which is why I’m throwing around words like “collaborated” and “documented.”

We were all in funny moods today. The best was when we went to lunch together at a Mexican restaurant and M, my coworker, was talking about getting a combo. He then mentioned that he really liked that song. We were all, “What song?” M: “You remember… Combo Number 5.” He was serious.

For the rest of the day, my coworker R couldn’t look at him because if she did, she would start laughing, and then the rest of us would start laughing… and then eventually someone would snort, and that would make us start laughing again.

Also nice? Having toast with butter and honey for dinner.

It was a lovely day.

Pardon the mess with the tag cloud (on right - scroll down a little). I’m working on adding tags to all the posts, and the cloud looks like crap at the moment. Use the categories on the left to navigate.

Thanks!

When the going gets tough, just remind yourself how freakin’ cute your kid is!

J-Man’s Easter Report:

The Easter Bunny doesn’t bring candy because, well, I won’t eat it. I only eat snacks that are in the tortilla chip food group. I loved my book. I was pretty whatev about the Little People boat and extra pirates. The plastic eggs looked pretty while flying off the couch.

Daddy looked sad. He said he asked the Easter Bunny for a Little People Noah’s Ark with the extra Pirate Pack instead.

Arrrrrrrrr!!! We’re being attacked by a freakin’ giant monkey!