Two parents, one autistic toddler, half a clue, and just enough light to see by
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What’s Your Autistic Toddler Like?

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

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

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

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

Significant issues he has:

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

Issues that aren’t too bad:

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

Issues we haven’t really seen:

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

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

May 7, 2008   No Comments

Parental Validation

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!

May 1, 2008   No Comments

Weird behavior of the week

Lately J-Man has been trying to stick small objects, particularly little bits of food, into his ears or up his nose. Normally this involves small bits or crumbs of chicken nuggets or toast. I don’t think he’s ever tried to stick anything sharp up there.

Let me just say that pulling a little fragment of chicken nugget out of your kid’s nostril is an experience better left unshared.

Anybody see this in their kid? This came out of nowhere and has stumped us. He doesn’t seem to have an ear problems and he doesn’t otherwise pick at his ears.

Anyone have any insight into this?

April 25, 2008   4 Comments

The Big Cook: Adventures in the Kitchen

This is a VERY LONG post about cooking. The only thing it has to do with autism is this: when your child is self-entertaining, it’s easier to cook while he’s around, because you don’t have to worry about him being all on top of you - because he can entertain himself (although there was a point Saturday night when I was in bed trying to figure out what the song running through my head was, and realized it was from the keyboard that played in the background all day).

Luckily, Tim realized it was ‘The Big Cook’ weekend, and planned his work accordingly so he could spend extra time with the J-Man. Oh, and that sometimes we run out of time to make a ‘fresh’ dinner because we’re running around with therapies and whatnot, and that’s when it’s great to be able to pull out something frozen and quickly reheat it. I love the microwave for that.

This past weekend, I did what we call ‘The Big Cook.’ It’s the reason we have two cabinets full of Gladware individual serving containers. Here’s how it works:

* The week before: sit down with a yellow note pad and come up with a list of foods you want to make. These should all be easily divisible into portion sizes and freeze and thaw well. Write down ingredients needed for each recipe, then add like together. For example, I ended up needing NINE POUNDS of ground beef total!

* Thursday night: make lists - we made the Costco list, the Super Target list, and the Harris Teeter list. We knew we could get meats and some larger sizes of canned goods at Costco, but didn’t want to buy a flat of 12 cans of diced tomatoes for example. That’s what the Super Target list was for. The Harris Teeter list was for the things we couldn’t get at the other two stores. HT is much more expensive, so I go there last.

* Friday immediately after work: load up into the car and go to Costco, list in hand. Buy most meats, that 105 oz can of crushed tomatoes, a new monitor for me, laundry and dishwasher detergents, and the best thing ever found at Costco: a red stapler.

* Friday night after putting J-man down: go to Super Target and get that list’s worth of stuff.

* Friday night after Super Target: Divide hamburger into portions needed for recipes, freezing the other 3 lbs in bags for later use, using your new digital kitchen scale. Rhapsodize about how much you like your new scale.

* Chop onions and garlic, and fry with 4 lbs of hamburger; drain. Add to giant stock pot, along with 105 oz can of crushed tomatoes, plus another 28 oz can, and lots of Italian spices (oregano, basil, parsley). Taste. Add more salt. Have Tim taste. Add a few cubes of frozen homemade pesto. Portion into many containers, label, and have Tim take out to the deep freeze in the garage, because the garage is also home to the giant cockroach, and seeing it skitter makes me shivery. WASH THE POTS.

* Saturday morning: instead of sleeping in, get up and start cooking again! Take one of the two chickens, and put into the giant stock pot. Cover with water. Put on the back burner, and let it boil for an hour or so.

  1. While that’s cooking, chop onions, garlic, and green peppers for sloppy joes, hotdog chili, chicken chili, and penne bake.
  2. Put onions, garlic, chicken broth, spices, hot sauce, and frozen chicken thighs into crock pot for chicken chili. Turn on and forget about it.
  3. Brown hamburger, onions, garlic, and green peppers for sloppy joes; transfer to other stock pot, and add tomato sauce ingredients to it.
  4. Brown hamburger, onions, and garlic for penne bake; drain. Put that into a container and into the fridge.
  5. Brown hamburger and onions for hotdog chili; drain. Make hotdog chili while sloppy joes mix is simmering.
  6. Remove chicken from stock pot, and refrigerate. Pour off chicken stock into big containers. Repeat process with the second chicken!
  7. SHOWER, you stinky person!
  8. Containerize (OK, seriously, Word thinks ‘containerize’ is an actual word,) both the sloppy joe mix, and the hotdog chili, and place in garage freezer. Clean out garage freezer so more can fit. Make SURE you label everything - we just use masking tape and a pen.
  9. Make the first batch of chicken and dumplings. This is a long and arduous process that I hate, but we love chicken and dumplings, so I make them, but only on The Big Cook weekends.
  10. Wash the pot, so you can use it for chicken chili: dump everything from the crock pot into it, shred the chicken, then add 4 assorted cans of beans, 2 cans of corn, and lots of cilantro. Stir and containerize.
  11. Eat PB&J for dinner. Never want to look at cooked food again.
  12. Put J-man down for the night - and have Tim separate the meats you bought at Costco into individual servings - freeze those as well.
  13. Make the other batch of chicken and dumplings. Force Tim to come downstairs and help with the dumplings. Containerize everything and make Tim take them out to the garage. Realize we are now out of individual-size containers. Put one giant container in the fridge. Cram pots into dishwasher and run it.
  14. Moan about feet hurting until Tim rubs them. Sleep like death.

* Sunday morning: up to make the 3 pans of penne bake. Reheat container of hamburger mix you refrigerated yesterday - add mushrooms you just chopped, and diced tomatoes and spices and let simmer.

  1. Fire up the giant stock pot to make 8 cups of penne. While that’s cooking, go ahead and chop the onions, celery, and green peppers for gumbo, and the onions and garlic for spinach/onion quiche.
  2. Freeze the gumbo veggies in freezer bags since you don’t have any more individual containers, so the gumbo will have to wait, but now you’ve done the hard part.
  3. Make cheese sauce for penne bake. Put 3 pans of penne bake in the oven.
  4. SHOWER, stinky!
  5. Containerize the penne bake in bigger containers, consoling yourself that you’ll probably have that for dinners, so won’t need the individual-size containers.
  6. Chop up the ‘meat for stew’ into smaller pieces, and freeze in bags for later. We throw a couple pounds into a crock pot with some soups, cook all day, and serve over rice. It doesn’t have to be cooked beforehand since it’s so easy.
  7. Make spinach/onion quiche and bake. Cool, slice, and freeze 2 slices each in freezer bags for quick lunches. (I was going to make a ‘quickie/quiche’ joke, but figured you had already thought of it.)
  8. Marvel at the state of the freezer. It’s FULL!
  9. Take a couple containers of food over to a friend’s house - three of the four of them (including both adults) are sick, or have wrist issues that preclude cooking.
  10. Make marinade for ham, and put it together with the ham in the fridge for overnight.

* Collapse on couch. Fold four loads of laundry done during the cooking ‘downtime.’

* Get J-man ready for bed.

* Soak feet. Even though you knew to wear shoes all day, your feet are still killing you.

Today I still need to bake the ham, and I truly would have made gumbo if we weren’t out of containers. I thought about going to buy some more, but just couldn’t do it. At least ham is easily freezable in freezer bags. I was also going to make 10 lbs worth of garlic/onion mashed potatoes, but again, no containers. I actually MAY go buy some, since potatoes will go bad. What? You didn’t think you could freeze potatoes? The only issue people have with that is the texture, and since in this case they are mashed, the texture isn’t affected.

That, my friend, is ‘The Big Cook.’ It will be a LONG TIME before I cook anything complicated again, and that’s the beauty of it.

Hints for your own big cook:

  • WEAR SHOES. Your feet will hurt less.
  • Clear the counters and make sure all the pots are clean the night before. You will need the room!
  • Double, even triple, recipes. (Or in the case of spaghetti sauce, quadruple) It doesn’t take much longer to chop two onions instead of one, and saves you from having to do a big cook that much longer.
  • Be able to multi-task.
  • Label everything. Trust me: hotdog chili looks like spaghetti sauce, which looks like chili with beans, and they all sort of look like veggie soup.
  • Use pockets of time where something is cooking to accomplish other things, like doing laundry, or chopping onions/garlic/green peppers for other recipes. Or, use a chopper/food processor. I didn’t use my mini chopper this time, because I knew I would only have room on the counters for a few things at a time, and anyway, I kind of like chopping,
  • Wash as you go.
  • Have someone available to rub your feet at the end of the day.

April 22, 2008   1 Comment

Yeah Toast!

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

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

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

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

April 13, 2008   No Comments

Why We’re Not GF/CF

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.

March 31, 2008   No Comments

The Information Fire Hose

(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.

March 29, 2008   No Comments

Accentuate the Positive

I had a rough night last night. It was one of those cumulative sort of episodes where you stockpile stress and worry and get to the point where you have to empty some of what’s in that bucket to get to the next day. I’m sure that means I need to focus on better ways to deal with that.

Part of this is not paying enough attention to all the positives that happen every day. So before our big appointment today, let me tell you one.

Yesterday, he ate a mouthful of a peanut butter and jelly sandwich.

This may sound utterly trivial to a lot of parents, but this is the equivalent of me orbiting the earth without a spaceship. There are a number of textures in a PB&J that normally make him gag (the literal, retching kind). He didn’t look terribly excited by what he ate, but he chewed it and swallowed it - no taking it out of his mouth and handing it back to us in a panic.

He earns every triumph, and every one is cause for celebration. I needed to be reminded of that yesterday.

March 19, 2008   No Comments

Coughing and whining

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.

March 8, 2008   2 Comments

Party Animal? Only if it’s a mouse…

We went to our friends’ little boy’s first birthday party today. Of course, it was scheduled for almost exactly when we try to the J-man down for his nap (not that he sleeps every day, but we try!). He had a good time running around their open floor plan house, although in the beginning, he felt it necessary to drag me along too.

There were probably 10 other kids there. I would say maybe 2 of them were near J-man’s age. They talked, maybe not clearly, but with actual words. They ate real food. They played with the toys provided, and even to a certain extent with the other kids.

My kid? He walked around and around, and played with the front door and the chair-rail on the wall. Other than that, one of us was holding him. I don’t believe there was any voluntary interaction on his part. Yes, if someone were in J-man’s way on his trips around the downstairs, he would push them out of the way. There was a playroom set up – J-man refused to go in there (although it WAS pretty loud). He ate – nothing. He drank – nothing.

When J-man was 22 ½ months old, he finally started to walk by himself. There wasn’t a physical reason he couldn’t do it before then; he’d been cruising since he was 1. We had to teach him how to fall safely, because it didn’t occur to him to put out his arms to block his fall, and he ended up face-planting the two times he tried letting go. Finally, one evening he just started walking. None of that “take 2 wobbly steps and sit down” stuff for him. The next day, he started running. It was like he had to make the decision to Just Do It.

Sometimes I want to say, “Just talk already! Just eat already!”

February 24, 2008   No Comments

The quest to find our own asses begins

To put it simply, this is primarily a blog for parents - particularly of ’special needs’ kids - who feel either stupid, occasionally or perpetually inept at parenting, or, most likely, both. This doesn’t mean you really are stupid or inept, but if you’ve ever been so mental that you’ve made it to the mailbox in your underwear before realizing it, you definitely will start to question everything. If you didn’t realize your ‘garment deficiency’ until your neighbor asked you about it the next day, you’ll really feel at home here.

We’re the proud parents of our 2 1/2-year-old son, who is the bright star at the center of our universe. He has an exuberance that can brighten any room. He also has a great many struggles, but he faces them bravely and with a determination that inspires us. He goes to various therapies during the week, all of which we’ll cover in future entries.

Some of his issues have a fairly clear diagnosis; others do not. The most obvious one is Sensory Integration Disorder. You’ll also see this referred to as Sensory Processing Disorder, Sensory Integration Dysfunction, and a few other things. The idea is essentially the same.

There is a growing sense that he also has apraxia of speech. He uses very few words and the challenge has been to understand why. He also has some issues with coordinating fine motor movements, which is most likely related to his sensory problems. As a result, he can’t really sign either.

He’s also very delayed in his eating skills. He was in feeding therapy for a long time and still is to a lesser degree. He only eats a few foods. It became clear that he’s not ‘picky’ but instead has sensory reactions to many types of food. It’s complicated, but we’ll get more into it later.

The good news is that he seems to understand us quite well and follows instructions as well as most two-year-olds. He’s a social kid and gets along well with most anyone. Thankfully, he has very few tantrums, and when he does they are very short.

The complicating problem is that he also has some other indeterminate developmental delays. Autism has been bandied about, but none of his therapists currently think that’s likely because of his social skills and general ability to tolerate situations and activities that kids with Asperger’s or autism usually cannot.

So, we’re on a quest to help our son decipher the world and grow into his full potential. We know other parents are going through this too, often without support or understanding of what to do. Our hope is to connect with parents who are struggling to understand what is going on and share whatever insights we have with each other.

I guess you could say that this is our way of talking through things in hopes of discovering the answers to our countless parenting questions. If we can find common insight and community with other parents and help each other figure things out, then we’ll have accomplished something here.

You don’t need to have a child working through anything we’ve mentioned above. If your child is having a hard time and you feel clueless or frustrated, you’re in the right place. We know that a lot of parents of special needs kids feel isolated, stupid, and frustrated. Be welcome here! You’re in good company.

This will be a tag team blog. My wife will share her wise and sage-like thoughts, and I’ll do whatever it is I do. We’ll try to keep it light-hearted and fun, but we aren’t bouncy, chipper types so who knows what else will come out of our fingers.

So, here we go!

Oh - in case you’re wondering, it comes from the saying, “He can’t find his own ass with both hands and a flashlight.”

February 18, 2008   2 Comments