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

The J-man is having one of those days. OK, maybe one of those weeks. He does brilliantly at some things (see also: the typing thing!), and then completely loses it with others (see also: speech therapy today. Whew!). I don’t know if he’s still just off his game from being at the grandparents for the weekend, or if he’s going through a growth spurt or some kind of developmental spurt, or what, but it’s been WILD in the old Flashlight house lately.

First off, little man isn’t sleeping a whole lot. He is spending more and more time kicking the side of the crib instead of sleeping. Second, he’s not listening to directions as well - yes, I know we’re talking about a 2-year-old, but there were still things he would respond to. His eating has been pickier than ever - although cheese toast is still a huge hit, the nuggets aren’t as awesome as they used to be. And, the shirt chewing is back. He essentially is a big ball of stress.

On the plus side though, he knows WAY more of the alphabet than we thought. When we sing it to him, he says, or tries to say, many of the letters, and is learning to recognize them on the keyboard, or in his ABC board books, as well. Go little man! He is pointing to and recognizing more pictures in the book Tim reads him every night at bathtime, and there is nothing so cool as watching your kid point out ALL the flowers on the page when asked where the flowers are - especially when we had only previously pointed out the flowers in the ground that Tigger is watering, not the ones Pooh is holding, or the ones by the fence, or the one that Eeyore is admiring.

He’s also really working on saying “I love you” which will just melt your heart. He’s working hard on climbing and going down steps, and is able to do it holding onto the rail and someone’s hand - occasionally taking “big boy steps” which I don’t think we’ve consciously tried to get him to do yet.

Hopefully, we’ll settle back down soon, since he has a hearing test next week, then (dun dun duuun!) the dentist the week after. Can’t wait.

(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 are a very kind and gentle family towards each other in general. We are polite towards each other – we drop “pleases” and “thank yous” around here like they are nothing. If we disagree, we try to discuss the issue rather than scream at each other (although sometimes the discussions can get heated!). Right now, we aren’t being as kind and gentle toward each other. We’re sniping and being sarcastic during the day, although at night when we lie in bed and talk, we are very sensitive to the other’s needs.

As I have mentioned, I read a lot. I’m re-reading old favorites – books that I know will comfort me. I know where the hard parts of the stories are, and I can easily skip to the good parts. How I wish that life could be like that sometimes. I’m sure everyone does.

Right now, I’m re-reading Betsy’s Wedding* and have gotten to the place where Betsy is writing her Rules for Married Life. “Always, always, be gentle and loving. No matter if you’re tired or feeling cross.” That’s something we have to remember right now.

It’s very easy to let ourselves take out our anger and frustration on each other, and I’ve decided I will not let that happen.

(*Betsy’s Wedding is the final book in the Betsy-Tacy series by Maud Hart Lovelace. They are books describing a girl growing up in an idealized early 1900s Minnesota. They are wonderful escapism if you like “happily ever after” types of books.)