I’ll indulge here in a bit of a screed against “The Media.” The trouble with such screeds, of course, is that “The Media” is not monolithic and not all media is created equal. But there seem to be certain tendencies in the “mainstream media” (another amorphous entity) which I find objectionable. To drill down even further, my annoyance generally centers on “pack reporting tendencies in television and newspaper political news and punditry operations.” But that’s more of a mouthful than “The Media.”
One tendency is the “Christians are Republicans” narrative. Craig at Reverent & Free has a nice post that highlights James Dobson’s latest antics which contribute to that narrative. To maintain this narrative, you have to favor “the right kind” of Christianity and discount “the wrong kind.” Much of Dobson and his ilk’s power in the political discourse comes from “The Media’s” assumption that guys like Dobson are entitled to speak “for Christians.” After the Reformation, Christianity shattered into a million little pieces, making a centralized voice for the faith problematic.
The words and actions of Dr. Dobson illuminate further the problems that arise when politics and religion collide. Dobson’s interpretations of scripture are specific to his own particular sect of Christianity. Dobson was offended because Barack Obama dared give voice to a worship of Christ that doesn’t involve deference to the standard GOP issues, specifically same-sex marriage, abortion, and prayer in schools.
Will “The Media” get down in the Biblical weeds and try to determine who has the better of the argument vis-a-vis the teachings of Jesus? Of course not. If we’re lucky – something about which I’m not confident – they will at least avoid characterizing this as a battle between “real Dobsonian-Republican Christians” and “pseudo-Christian Democrats.”
My other recent annoyance with “The Media” comes from their discussion of “independent” political groups with particular focus on the Swiftboaters who attacked John Kerry in the fall. The general punditry discourse about the Swiftboaters has completely ignored The Media’s role in giving Swiftboaters power. On their own, the Swiftboaters were just spitting in the ocean; another bunch of cranks pissed off at Democrats, making spurious charges. But, The Media lent the group its power. It’s a little like a virus that invades the body and uses the body’s apparatus to reproduce itself. The discussion of the Swiftboaters has generally been devoid of analysis about how and why the Media allowed itself to be infected.
First Steps is a program up to age three. There is a sliding scale fee, such that we pay more, which is totally appropriate.
We could do means testing. Or we could just refund me that portion of my taxes that went to the program for the last twenty years I’ve been a taxpayer, if we want to disqualify me from those services. The thing is, a lot of insurance doesn’t cover a lot of diagnostics or therapies. There’s one particular insurer I’ve dealt with on behalf of my patients that just won’t do any kind of speech therapy or behavioral therapy for kids. Looking at the bill from the time we used our local hospital for speech therapy (2 hr, $500), 99% of families could not afford to do that out of pocket for the necessary length of time. So you could means test and exempt 1% of people from the services, until that 1% has exhausted their resources, taken out a second mortgage, and then start covering it, I guess.
Tommy had repetitive nonpurposeful movements, hand biting, and limited vocabulary at 15 months. Walked at about 17 months. All vocabulary gone at two years. Spinning objects and obsession with lines. He would march up and down the length of tables, looking at the edge of it from different perspectives, arms thrown awkwardly behind him. He wouldn’t answer to his name or make eye contact, couldn’t play with toys as intended (just spun the wheel of a toy car over and over). He would also walk right into other kids, knocking them down, without any apparent awareness that they were even there. This really became dramatically worse at age two, over the span of about a month. His obsessions broadened a bit to include stop signs and electrical outlets, then bar codes. At age 2.5, he said his first word in six months, which was “barcode”. His second word was “outlet”. At that point, a dinner out consisted of him sitting in his chair, and turning about, pointing out every outlet in the restaurant, over and over, until dinner was over. Any task he tried to perform (like chasing after a dog) would abruptly end if he encountered a line on the sidewalk, or a wall, or any other line. One day in the park, we came upon a set of bleachers. There are a hell of a lot of straight lines in a set of bleachers. He would probably still be circling those bleachers today if we hadn’t pried him away. He also has impaired fine motor skills.
Today, after intensive therapy, he has about a 200 word vocabulary, and is starting to combine words in two or three word phrases, at 33 months of age. Fine motor skills are improving extremely slowly. He’s learning to look at things other than lines, and can be redirected. Several times/day, we will see that he has his arm outstretched, hand cocked back, and is rotating his hand so the fingers are all visible, then blend into one line. So we say, “What are you doing, Tommy?” And he says, “Looking at lines!”, and stops doing it for a while. Any cord can be stretched to make a line. He likes “regular bridges”, but is completely infatuated with the “tatention bridge” by Rockport, which is a suspension bridge of the type that has all the straight cables coming off the two towers. Now that he has a growing vocabulary, we can redirect him to look at all the other things in the world other than bridges, stopsigns, and outlets. He’s over barcodes by now, which is a huge blessing since they are everywhere. He can walk right past a table, too. He still loves his outlets, and has to describe whether then are “in” or “out” (if something is plugged in or not). Occasionally he will encounter a “different outlet” with more holes or like the one a dryer plugs into, and his day is complete.
He has some strengths that are not typical of other kids. He knows his alphabet, and reads the letters off menus and labels. He can count to twenty. He can verbally spell his first and last name. We think his memory will be quite a bit above average due to some of the things he says that reference things from back before he had any language. He is developing social skills. Originally (about age two), if a nice older lady would come up and make over him, he would smack the crap out of her. Then it became him just saying, “Kick lady.” Now his behavior is kind of similar to what is in my head, in a scary way. When the receptionist ladies make over him in the morning (and he isn’t in the mood), he will wave and say, “Hi ladies”. Then he’ll walk about ten feet past them, sigh, and mutter, “Kick ladies.” That ability of his to be pleasant, control his impulses, and yet still express his feelings pretty appropriately makes me damn proud of him and his progress.
Despite the progress that has been made, there are periods of from 2-3 days up to a couple of weeks where he regresses to worsening repetitive obsession-bases bahavior and severe regression of his language. These are worse when he is ill. It’s happened a couple of times now, so we just wait and it gets better.
Right now we’re at a pretty good point. He’s young enough that he’s really not supposed to be doing all that much, so no one who casually sees him has a clue there’s any issues. He’s also ridiculously physically attractive, which really draws people to him and will be an asset to him. He also has empathy, notes when people laugh or cry, loves his dogs, and is in a good, playful mood most of the time. So we have a lot of reasons to think his outlook is pretty good. When we sit and talk about how we think he’ll turn out, we think he will be an intelligent guy with some unique gifts, along with some pretty profound social awkwardness, probably obsessive/compulsive tendencies requiring medication, probably some medicated attention deficits, and problems with dexterity. That’s our good scenario that we’re all working toward. Worse case would be all of the above, plus an inability to ever live independently. Time will tell.
A bit longwinded at the end of a long thread. Love to talk about the boy.
Of course you would. Right up until it was YOUR kid that needed the services and your insurance gave you the finger. Then you’d be right there fighting with the rest of us, bitching about why it wasn’t already available to you.
First Steps is a wonderful program, with many people working hard to make it a success. I know several people who marched downtown to protest those budget cuts.
Yes, let’s make a list, shall we? What services do you think your children should not be entitled to?
Amy,
You rock!
First Steps helped us with our triplets who were born at 28 wks and between 2-3 pounds. One of the girls had a head that was pretty much at target age even though she had this little scrawny body and neck. She had to do a lot of exercises where the therapist would drape her over a Swedish exercise ball and she would try and raise her head up. It got so that she would scream bloody murder when she saw the therapist walk in the door. Her head is normal today :-)
Amy-right on!
T-Tommy is such a cute kid. And with you getting the jump start in his life, I really think he will overcome a big chunk of his challenges. As you said-and I saw for myself-he’s very bright. That will serve him well as he gets older. He’s lucky he has you guys as parents-and mom and dad as grandparents.
I hope Obama will get back much of the funding that has been cut. Now that advocates are discovering childhood issues (autism, ADHD, etc.) earlier, we need to get the jump start on it. Why wait until kids are in school? We can see how well that served our generation.
I consider myself among the few fortunate that the ELCA realized the kind of strains the ministry puts on families-so we have very good behavioral health insurance. I have personally used it when I needed to work through a few issues that were job-related. I had it, why not use it? I and every member of my family get six visits per year that can be for any purpose and are covered 100%. And they picked up a huge chunk of Josh’s testing, etc. After we get the health care crisis under control-this is the next area that needs to be addressed.
To clarify for Buzzcut, as well as I understand it (my wife is the real expert on this).
First Steps has a sliding scale fee, such that we don’t qualify for help from the state–which I think is completely appropriate.
The benefit for us is that the therapists agree to accept a lower fee for those in First Steps, through a contract with the state. Much like a hospital might agree to accept 20% less from Anthem than they would expect from a private payer. So we can get therapy for $100/hr by being in First Steps. The state doesn’t pay the difference. The provider just agrees to take less.
Once First Steps was cut back, we had to have a provider drive down from Corydon (about an hour). But due to Corydon now servicing a much large area, we were waitlisted. So some therapies weren’t available here any more at any price, and those that were would have to take place at the hospital, outside the First Steps system, at $300/hr.
So our option was to pay x dollars for a year, and have wife and son live with my parents. Or we could have paid x plus $50,000 (roughly) this year, and had them live here and receive some therapy, kind of cobbled together. It was a no-brainer, really. Insurance may cover a lot of this. But First Steps evaluated him and is not questioning a need. We haven’t yet had insurance kick in, since we started therapy at the tail end of last year (meeting the deductible in late December), and just met the deductible this year. Now insurance is wanting more paperwork from the developmental pediatrician, sending more letters laying out what they believe are the limits of their responsibility toward him, etc. So limiting the charges at the time of service if possible is a pretty big deal.
So I guess when I hear that the mean liberal bogeyman is going to raise my taxes, I kind of take it in stride since we’ve already dodged a $50,000 fee markup brought to us by a Republican administration. And it wasn’t dodged easily.
T, if that’s your attitude, why on earth do you live in Indiana?
I think you’d do a lot better in a real welfare state like New York or California. Indiana just doesn’t spend the money to get the “human services” that it sounds like you expect. Other states do.
T, also, thanks for taking the time to detail your son’s condition. I certainly hope he improves.
And, just to perk you up a bit, just know that with an obsession for lines, outlets, bar codes, bridges, and an inability to make eye contact, he’s going to make a great engineer one day. ;)
Seriously, the “experts” aren’t kidding when they speculate that engineers have low level autism. I see this kind of stuff every day at a much less severe level. I have done and do them myself at times.
I don’t know if its better to indulge the obsessions or deny them completely, and maybe he’s a little young, but bar codes are a fascinating system. Maybe he’d be interested in what they really mean. They all mean something. Type one into google sometime. You can get loads and loads of info that way. You can pick up a “Cue Cat” on Ebay and hack it to make the translation from bar code to google even more seamless.
Yeah, right about the time I head about “Cue cat”, he got over bar codes.
He is doing amazingly well, according to his therapists.
It’s not just that I perceive the services are deficient. With about 1 in every 115 boys in Indiana being diagnosed, there is a real need.
Plus, the services were here when I bought the house, etc. I could just sell the house and leave because of a policy decision. But that’s pretty unreasonable thing to expect me to have to do. So we’re accomodating the governor’s short-sighted prioritizing the best we can.
Plus, the services were here when I bought the house, etc. I could just sell the house and leave because of a policy decision. But that’s pretty unreasonable thing to expect me to have to do.
I don’t think that its unreasonable. I’m not telling you to move somewhere else in Indiana. I’m telling you to move to a welfare state like New York.
I left New York under completely opposite conditions. The oppresive welfare state wasn’t providing the economic opportunity I needed.
But the flip side of that welfare state is that it does provide a lot more services than you will ever see in Indiana.