Oct 19, 2009

advocacy

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."

6 comments:

Claire said...

Seriously - it's like you're in my mind, and talking about my life.

I went through this with my eldest girl, who is now 6. Delayed speech, bad reactions to loud noises, dificulty in carrying out instructions etc. I thought (on my google based education) that it might be Asperger's, which is kind of like a milder form of Autism. I mentioned it when she was 3, to the various services that she was associated with - educational psychologist, speech therapist, health visitor, and was kinda scoffed at, and told that i was being overly dramatic, that her delay in speech was probably just developmental, that she'd probably just grow out of it. All these people were involved in assessing Eilidh, and trying to figure out 'what was wrong', but they all thought i was being that 'mother bear'. Anyway. I pushed for her to get a assessment for autism. She eventually got it, just before she was due to start school. She was just on the spectrum, and was diagnosed with asperger's. I'm relieved that i was right. Also relieved that they were able to put a 'label' to her delays and oevr reactions to things. It also menat that i could understand what to do, and how to deal with ehr and how to understand her better.

I think you just have to trust your instincts. Eilidh is now great at talking, does extremely well at school etc. there certainly was a point where I thought she kinda 'grew out of it', in that she all of a sudden picked up her speech adn conversational skills, but it took quite a while to get there.

Don't know if this all makes any sense, but I do know how you feel. My youngest child is 19 months and still doesn't talk. She throws tantrums. I think it's cos she can't talk. At the back of my mind, i worry that we're going to be going through the same thing as we did with Eilidh. But who knows.

You just go along with your gut feeling and insist with doctors etc to go along with your gut feelings and at least offer some solutions that will put your mind at rest..

:)

wonder woman said...

Melissa, when you mentioned that they have intense reactions to bugs, wind and sound, I thought, "I wonder if it's Sensory Processing Disorder."

If I were in your shoes at this point, I would continue to learn all I could. Through google and the local libraries.

My SIL is going through similar things with one of her children. He has some language issues -- he just doesn't understand all that's being said to him. He needs to be seeing a speech therapist, which they can't afford. And there's a special preschool he could attend, but it's only for people being financially assisted. So they're applying for gov't assistance for him, but the process is going SO SLOWLY. It's beyond frustrating for her.

Anyway.....I would look into financial assistance options and what programs are available locally that you think would benefit your children.

Good luck. I wish I could do more.

Emmy said...

My oldest also had SPD I believe.
I could list the traits, but you already see it. Even as young as four months old, if he got overwhelmed/too much stimulation he would scream for 45 minutes.. holding him made it worse.
He seemed to have no sense of boundaries and would get right in peoples faces to talk with them, and on and on.. but anyway, you know that. I have a nephew who was diagnosed with Aspergers, so I knew there was the chance of it being in the family.
When I talked with his pediatrician (at his 3 and 4 year well check), he said there was definitely something but we would wait to see if he outgrew it. He said between 4 and 5 we would be able to tell if it was something he would be able to out grow or if more help was needed.
Last January (when he was 4 yrs and about 4 months), it was like some magical switch just clicked in his brain. Things aren't perfect and there are still some odd behaviors, but his ability to cope, to adjust, his concept of personal space WORLDS better.
But you know, you as the mom know best. Just know that if it is SPD there is hope that it will just be okay.

RhondaLue said...

You are a great mom! You just want the best for your kids and I think you are terrific for putting so much thought and research into it. Just from my experience with friends who have children like this...if they are willing and able to slap an autism diagnosis on your kid-take. it. That will open up a big opportunity for therapies and those sensory things will fall under that umbrella of therapies that you can get with the label. Labels mean nothing-it's just a means to get your child the therapies they need. It's a tough pill to swallow and stupid that we have to accept them when we know they aren't right but sometimes it's just a means to an end.

Also, like someone else mentioned, Aspergers is a very mild form of autism-high functioning kids and they almost always have the sensory stuff with it. They can appear to be a typical kid...but to those that live with them...not quite.

Good luck to you. Keep doing your best and you can't go wrong. Pray on it and decide what feels the best path to take. {hugs}

Kimberly said...

I've heard similar stories to this, most involving the Autism label being slapped on where it most definitely does not fit.

My instinct would be to fight, but with help (I'm no leader). Find other families in similar situations and try to band together, perhaps? Start with a online support group and go from there?

Rachel Sue said...

You are a great writer. Get your voice heard. Write to parenting magazines. Keep posting about it on your blog. The more people aware, the more who will seek help for their children with similar problems. And the more people who seek help, the more specialists and insurance companies will need to add the coverage.