The Liberty Papers

Rick Santorum believes that the Obama administration is in favor of some Gattaca-like dystopia, I suppose:

“One of the things that you don’t know about ObamaCare in one of the mandates is they require free prenatal testing,” Santorum began telling about 400 people here. “Why? Because free prenatal testing ends up in more abortions and, therefore, less care that has to be done, because we cull the ranks of the disabled in our society. That too is part of ObamaCare — another hidden message as to what president Obama thinks of those who are less able than the elites who want to govern our country.”

Now, I’m in a weird position to discuss this, because I’m a bit of a pro-life libertarian, but at the same time I’m very libertarian about being pro-life. I think when it comes to my wife and I, I’m very strongly pro-life. But that said, I’m not sure I’m strong enough in the belief in being pro-life that I’d throw a woman or a doctor in a cage for aborting a pregnancy.

My wife and I have two kids, are expecting a third. For the first two, we deliberately declined the amniocentesis because we were willing to bear the child regardless of the results. It seemed that sticking a needle into my wife’s uterus is probably a silly risk to take [despite being a low-risk procedure] when we had no intention of letting the results change our behavior. With the third, it appears that medical technology has advanced to the point now where a blood test & ultrasound can now determine if there’s any major risk-factors, and luckily the results to date are that rather than being a 1 in 200 chance of having a baby with Down’s Syndrome, we’re happy to say that the odds are 1 in 11,000. It is nice to know that.

But do I want to force a woman to bear a child with Down’s? Do I think we should somehow cheer those women as being heroes, as folks like Santorum, who has a disabled child, and Palin, who has a disabled child, are cheered by the right? The responsibility of raising a child is huge, and it’s hard enough to do with a non-disabled child. Do we want to force that on people who are unwilling — or unable — to bear it? Sure, I know it’s different these days, perhaps back in the day, it wouldn’t have been such a tough decision. After all, we have access to tools to enable disabled people to live as close a life to a normal person as possible. Plus, you might be thinking ‘do you need disability insurance‘? Well, this is also available too for many worldwide, so it’s not like those suffering do not have understanding, or opportunities to thrive as anyone else. However, the problem is if the quality of life is really not there, or the coping strategies of the parents are second to none with them having issues themselves, it’s not really fair on either of them to bear the child in the first place. It’s such a controversial topic but you really have a lot of factors to think about when it comes down to it.

This hits home for my wife and I. In October, we found out that our younger son was diagnosed with autism. We had some idea prior to this that something was amiss, as he wasn’t talking (nor showing much interest in starting, i.e. making the normal child “babble”). Autism is a scary diagnosis, especially with a 2 1/2 year old. With now 4 months of intensive speech therapy, at best we can say that we’re seeing improvement, but it’s slow going. Not a week goes by that my wife doesn’t ask me, “He’s going to talk eventually, right??” Well, I think he is, but we’re not seeing it happen so much yet. He has many of the characteristic behaviors — he’s very picky about environment and routine, not at all interested in interacting with other children [and will throw a fit when they encroach on his space]. Trying to get a haircut requires my wife and I to work together to hold him down in a seat as he screams and struggles while the lady at “Cool Cuts 4 Kids” tries not to cut his head, rather than his hair. At 2 1/2 years old, the first time he ever let me clip his fingernails was last Friday. And the worst thing of all is that he has no concept of language, so while you can sometimes soothe or explain what’s wrong to a 2 1/2 year old, nothing gets through. I believe it will be easier someday, due to all the work that we’re putting in now to intervene, but severe cases of autism sometimes never result in an adult who can function for themselves in society.

As I said, had my wife and I known this prior to his birth, we still would have had him. But had my wife and I known before she’d conceived that this was going to happen, I’m not ashamed to say we might have waited a month to avoid this outcome. I dearly love my son, and I can honestly say that he regularly brings great joy to my life. But it’s hard. It’s really hard. And I know that it’s going to be hard — that he’s going to face difficulties doing “normal” things — all his life. I wouldn’t tell prospective parents that I wish they have an autistic child. Every parent wants to have a child that they can mold into a success, emotionally and intellectually. This diagnosis is a disability that means that we’ll have to work that much harder to overcome. We want him to have all the success that my wife and I have had in life, and that his older brother [and his upcoming younger sibling] have in life. We know, as parents, that we and that he are going to have to work much harder than “typical” for him to achieve that success. We’re willing to take that on; but I can’t say it’s what we would have chosen, all things being equal.

Nor is it only an emotional and parental burden — it is financial. We’re lucky, as parents go. I have an excellent job with pretty good insurance, and a lot of what we’re doing is covered by my insurance or through non-profits funded by the State of CA. That said, I’m on an HSA-driven health care plan, so we’ve got a pretty sizable deductible, and we blew through it in 3 months of his therapy. All told, we’re talking about costs related to the diagnosis and associated other testing that would have cost close to $10K at “book” prices (obviously the insurance-negotiated rates are lower), and ongoing therapy that would cost at least $2K/month at “book” prices, and still at least $1K/month at insurance-negotiated prices. To give our son the level of care that we feel he needs without all the insurance might be possible, but would be extremely painful (likely requiring us to move out of our house to a cheaper rental, or for my wife to get a job outside the house, which we’d especially want to avoid as she needs to keep up with his care & therapy). And it would only be possible for us to do because I’m the exception, rather than the rule, when it comes to economics.

Rick Santorum suggests that Obama wants to “cull the disabled” as a cost-saving measure — it’s easy to say that when you have the level of wealth that Rick Santorum (and to a lesser extent, upper-middle-class folks like myself) have access to. When you don’t have access to the level of care that we can provide, you’re consigning your disabled children to a second-class life. I don’t think that’s a Republican value, nor do I think it’s a Christian value*, to bring people into this world and not be ready and able to give them the tools to succeed in life. Rick Santorum might say “well then you should be chaste and not produce a child” — but being ready and able to provide those tools for a normal child, and being ready and able to provide those tools to a disabled child, are two very different things. (*Full disclosure — I’m neither a Republican nor a Christian, so perhaps I can’t necessarily hold court on those two declarations)

When it comes to autism, unlike something like Down’s, though, the “typical” case can be “recovered”. It’s tough to describe, but I often say that autism is something that makes “normal” things a lot more difficult than they would be for non-disabled people. Most of these difficult things can be language-oriented, and we know that language development occurs in fury in the 0-3 year range. During this time, a child is developing mental pathways in the brain, and it’s much easier at these early years than later in life. One of the critical problems dealing with autism is that we don’t typically know a child is autistic until after he starts displaying speech delays, i.e. after the age of two. This means that the intervention after the age of two to get an autistic child to “catch up” to their more typical peers must be very intense — right now my son is in 8 hours of speech, OT, and ABA therapies every week, and we’re looking to get some of the hours increased. The goal is to slam those neural pathways into place through repetition, because they don’t come naturally.

What does this mean? It means that knowledge that a child is autistic prior to that child’s birth can be a signal to provide therapy for the autism at a much younger age. It means that instead of waiting for a delay to be prevalent, you’re working hard from day 1 to ensure a delay never develops. It still means there’s a lot more work than a typical child, as the neural pathways that the child would normally develop don’t happen on their own. But it means that you can be building those pathways earlier in life, and get better outcomes for those children — something that Rick Santorum and Barack Obama can agree is the goal.

Rick Santorum claims that Obama wants to provide this testing so those children will not be born. As much as I’m against Obamacare, I think Rick Santorum’s positions on abortion suggests that he cares a lot more about making sure those children are born than he cares about what life they’re born into. Those of us in the real world are trying to make good lives for our children — whether we choose to have them or choose not to because we cannot provide an adequate life — and prenatal testing gives valuable information whatever that choice might be.