troll fodder

Did I mention that we're having Aaron tested to see if he fits somewhere along the autism spectrum? I know, I know! If only I had taken the time to hold my baby instead of isolating him in his jail-like bed at the far end of the house with nothing but a BPA laced bottle decorated with licensed characters in lead paint filled with Nestle Good Start and violence filled television programming for hours on end while I selfishly slept and pooped alone, maybe he wouldn't be so messed up at the tender age of 5. If you've met my kid (which is my not so direct way of saying "don't bother commenting on what I've done wrong unless you've met my kid"), you know that he has always been his own person. If he has been over to your house you know all about his fixation with light switches and how he has to try them all out to make sure that they do the same thing in your house that they do in ours. Chances are he's even tried to explain to you how he thinks the wires in your walls/electronics/body work to carry the energy to and fro, making things work. Remember his blankie? Still very much an integral part of his life. And yes, I've been informed that an oral fixation is likely the result of weaning him off the breast before he was ready. Not by anyone with any formal training, mind you, but doesn't research via Google count as just as good as a medical degree? When the director at his preschool (I desert him there three days a week while I go out and have a wild time doing things like grocery shopping! Cleaning the house! Going to therapy! Volunteering at a local elementary school! You just wish your life was so glamourous.) pulled me aside and asked me if I had ever considered having him tested, it hit me like a ton of bricks. Bricks of relief, that is. Relief that I wasn't teetering dangerously close to the edge of munchausen because I was finding myself questioning his "normal-ness" with increasing frequency. Of course, those bricks were generously mortared together with guilt. Why had it taken me so long to take steps to get my suspicions checked out? Why did it take someone else pointing it out, confirming my thoughts to push me to do something?


We had an in home screening three days before his 5th birthday. After two hours of questions, filling out forms, and casual observance of m'boy at his version of play, the screener (? Interviewer? I'm not sure what her actual title is.) told me that we should be expecting a call to set up a more formal session at their offices in 6-8 weeks. In case you were wondering, 6-8 weeks feels as much like an eternity as that 17-minute CIO session ever did.

I got the call two weeks ago and received the paperwork in the mail today. A benign packet of maps and instructions and a stapled together "Adaptive Behaviors Packet" that scares the shit out of me. I hate the idea that we are walking down the path towards some label that will follow him around for the rest of his life. It scares me even more to consider that if there is something there I've got 5 years of bad habits for both of us to unlearn. I'm comforted by the reassurance that the agency we've turned to has a "teach coping skills first" approach and that all of the local professionals (educators, social workers, speech/behavior therapists) that have come into my life (coincidentally?) since that first conversation last September have had nothing but praise for the agency.

Think of us on Valentine's Day. Because you love us, of course, but also because you love us and because I will be such a nervous wreck about how I am presenting myself in front of a panel of therapists, specialists, and doctors that they might decide that the bigger problem is not one of PDD but of MOM.

I dedicate this song to you, Anonymous, preemptively. I've got plenty of doubt about my maternal decisions without you weighing in.

PS: NSFW or Children Watching Over Your Shoulder. Especially the latter -- it's a rather catchy tune!












5 comments:

Curiosity said...

For what it's worth, no judgment here on any count. Trolls can suck it.

And incidentally, I can very much relate to some of this post. I end up second-guessing my instincts about things all the time, because there is a group of people out there that jumps too quickly to conclusions and I don't want to be one of those people, or can't fully trust that I'm not. Particularly hypochondriacs for me. "Hmmm...I'm having random intense shooting pains so bad I can't breathe at least several times every day. Should I mention them the next time I see the doctor? Probably not. I'm probably just imagining them. Maybe in a couple of years if they're still there." True story. I have a million of them. Ironically, I think hesitating to get things checked out and worrying about potentially being too reactive to signs is probably one of the clearest indicators that we're NOT the type of people who would go in with imagined concerns or make too much of symptoms that were really nothing. ...Not that the realization has changed anything.

All the best to you and your little guy. I'll be thinking of you.

Jori said...

I worked for a neuropsychologist who tested children for ADD, Autism, everything. Loads of tests and I'm sure much anxiety for the parents. The results should yield more answers for you than concerns. And what I've learned is they (docs) don't want to label willy nilly since, as you said, it will follow him for a lifetime. Good luck to you guys.

susan said...

Curiosity - the second guessing? That's the worst. Well, I suppose the third and fourth and fifth guessing are right up there, but that constant buzz in your head that you're not quite getting it right is what drives ya straight to crazy land. I guess the upside is that I'm fairly comfortable with the route by now... Thanks for the thoughts!

Jori - Thanks for the good wishes and for the insider's perspective. I'm so ready for some answers and a better sense of what direction to head in. The one thing I'm sure of is that my lack of consistency isn't doing much to help us sort out "normal".

Lora said...

Oral fixations are not caused by weaning a child because children wean themselves from sucking when they are good and ready. Whether breast, bottle, thumb, blanket, or whatever, a child will suck until the urge to suck withers away on it's own.

I know plenty of adults who still feel the need to suck.

Metaphorically and literally.

***

Autism and autistic behavior is "normal". For children on the spectrum. Unless crazy shiz is going down with your son that we don't know about, rest assured that Aaron is "normal". The spectrum for "normal" is infinite. Longer even than the spectrum for "autism" which seemingly stretches from here to the moon and back again.

Labels are as labels do. Wait, a label is as a label does. We've all been labeled and we all muddle through the label.

Guess what else is "normal" these days?

Effing labels.

So yes, labeling is very real and very scary and no one wants a labeled child but everyone wants a well and happy and adjusted and healthy and (don't say normal, don't say normal, don't say normal) normal child. But a labeled child is a treated child. A cared for child. A loved child.

Last time I checked, all those things trump labels.

I can't wait to go home where I can watch videos and see what song that is!

You're doing great, lady.

What's the worst that can happen?? Your genius baby is going to grow up and use his smarts to become an urban planner/engineer/rocket scientist/brain surgeon/whatever else it is that all the cool autistic kids end up being and marry a gorgeous lady and have a sweet and loving and unique and genius baby of his own?*

*I am in no way saying that J is autistic, I put engineer in there because I know that there are lots of engineers who have been plastered with the label of "autistic"!

**I am in every way saying that you are a gorgeous lady.

susan said...

Lora - I have to admit that as I was reading (and reading and reading and reading ad infinitum through all the materials that I could get my hands on) to verify that this was a path we needed to waltz down the thought occurred to me more than once that I might just as easily be reading about my husband as my child. Hell, my own compulsions/mood swings probably would land me neatly somewhere along the spectrum if I were ever to work up the nerve to go get that second opinion that Dr. R keeps pushing me towards.

You're right, though. A label only has as much power as we allow it or need it to have. And if having a label is what we need to give this boy a shot at changing the world? Label away and get me pointed in the right direction to guide him until he's ready to fly off on his own.

As far as the gorgeous goes? Takes one to know one! Love you!