So when it comes to your kids, how do you know if you're being a strong advocate, or you're just insanely over zealous/paranoid?
I know I've mentioned it before, but my kids have some developmental issues. They all have "stuff" to deal with in varying degrees and in different stages.
Yet, they're fairly normal.
But, at the same time, they're not. Normal. Or "typical," depending on how you'd like to word that.
To me, "normal" would be a kid who can be quirky and odd, yet goes through life functioning just fine. And then "not normal" would be the kids who can't function because they aren't just quirky and odd, they really have issues.
My kids are drifting between "normal" and "not normal." They seem to be doing ok, and then it happens and I'm reminded that they don't quite fit into either category.
We've seen specialists, and therapists, and even at one point a Pediatric Geneticist that had to be called in from another city just to see us.
And the definitive answer to my children's problems:
"I don't know. Maybe they'll grow out of it."
Like that's supposed to help. And yes, wouldn't it be lovely if one day they all woke up with no speech or language problems? And then the next day, Opie will decide that he'll no longer have overwhelmingly angry outbursts that turn violent and abusive? Ooooh, and the next day all of their low muscle tone will tighten up magically. And then right after that, all of my kids will decide not to have intense reactions to things like bugs, and sound, and WIND.
Last month our Pediatric Developmental Specialist told me that maybe we should diagnose Monkey with Autism. Do you know what that feels like? Like someone took a bus full of angry tourists and drove through your stomach. Especially since Monkey is NOT Autistic. It just doesn't fit. And this isn't just me being in denial. It really doesn't seem right. So that angry bus of tourists is aiming at my stomach for all the wrong reasons.
So I did some research. Because I'm good at this whole Googling thing. And I came up with a much better, much more fitting base of reasoning. It's called "Sensory Processing Disorder" (or "Sensory Integration", if you'd rather.)
S.P.D. is basically where all the nerves in your body -which control all of your senses and how you perceive yourself in space- function properly, and your brain functions properly, but the pathway between the two is just not cutting it.
The best way to describe this is something I heard from one of our therapists: There are roads in your brain that information travels on. And most people's roads are shiny and paved and work fine. With S.P.D. they are gravel, or dirt pathways overgrown with weeds, therefore not working so great. The cool thing is, with the right therapy and proper attention (especially with early intervention) you can clear these paths and pull out the asphalt to start paving.
But here's the thing.
The medical community doesn't see S.P.D. as a proper diagnosis. I could tell after seeing our specialist today that he didn't give it much merit. And I guess insurance companies/school or government programs don't give it any merit at all. It's viewed as a secondary diagnosis - just something that sits in the background of a much larger, much stronger label. You know, like Autism.
But my kids don't have those big labels. Nor do I want them to. But without them, I can't get them the therapies and services they need.
Opie needs to be seeing a child psychologist. We tried to get him into one. We just saw a social worker, who in my opinion was crap, and then charged us $300. Occupational therapy is at least $50 an hour. Per kid. Per week. Not to mention, I don't even know if anyone in the state provides Auditory or Visual Sensory therapy, which I think my kids would benefit from immensely.
So what do I do?
As far as I can see, these are my options:
1) Fight. Raise enough hell that programs, diagnoses and services change. And within enough time to get my kids those programs/diagnoses/services. This scenario is highly unlikely to succeed. It takes way more than one voice to change things, and it takes tons and tons and tons of time. I could die of old age before change happens, even if I fight my entire life.
2) Learn how to be a psychologist. Learn how to be an Auditory/Visual/Occupational/Physical therapist. And do it cheaply, and with only a Google education.
3) Just ignore it, and hope my kids grow up to be functioning adults. Granted, I tend to worry a LOT about my kids. And sometimes unnecessarily so. Even to the point where I feel -and those around me suggest- that I'm the only one concerned because there's nothing to worry about. And yet, they don't just let anyone participate in the birth-3 state therapy program, and there's a reason Opie goes to the school district's Early Intervention Developmental Preschool. These programs are picky - you have to qualify, and at a horribly low bar.
So tell me. What do I do? I really feel like "that parent." The one who goes all "mother bear" over her kids, asking for more and questioning things and maybe slightly going off the insane end of the pool because I feel completely helpless drifting here in the land between "normal" and "not normal."