28 April 2010

Confused.

I thought pregnant ladies were supposed to get blood tests and sonograms so that they could plan ahead for complications and line up other medical providers if there were some sort of problem. But then I looked into it a bit more and it *seems* that many of these tests are put into place to "inform" parents of problems... with the unspoken understanding that they can terminate their pregnancies before time runs out legally. Problem solved.

So when I've been asked, I have refused to allow my children to be tested more extensively (for example, for fragile X and other problems) in "studies" on autism. The last thing I want on the market shelves is a test that would diagnose autism prenatally. Soon autistics will find themselves in the company of Down Syndrome people if that happens. People will "selectively abort" children if they aren't exactly what they expected.

I think, though, that if I were pregnant that I would want to know if my child were autistic ahead of time. I would just want to be prepared. If there were a test, given my history, I'd take it. But I wouldn't want to help MAKE that test available, knowing other people would use it eugenically. Maybe that makes me a hypocrite; but really, I wouldn't want to see a kid die just because he's autistic.

I wish that we could move away from the "autism strikes 1 in 100 kids and ends 95 percent of marriages" types of statistics some groups like to use for fundraising and more toward "parenting a child with autism is really tough, but you can do it, and I can help!" attitude.

That being said, I won't lie to you. It's tough parenting an autistic child. It's really tough. I can fully sympathize with people who bellyache about this or that service not being available, how hard it is to have ANY KIND OF LIFE whatsoever, the real lack of support from the community around us, even the inability of the child to be on "our wavelength" sometimes. We're parents, but our lives are changed from what we expected. We're frustrated we can't do the things we did before. We haven't done a good enough job by our children because we either don't know how or have just plain run out of energy to keep looking for resources that aren't there.

And we want to advocate for our kids, but often there just plain old aren't resources out there. In our family, we aren't poor enough to qualify for the big money help from the Medicaid people, but we're way too poor to do the $25 copay several times a week, even if services WERE available on our medical plan.

And still yet, sometimes we don't "get" what our children need. We know that the "bratty" behaviour we deal with isn't because of brattiness, but that doesn't mean we can't help our children improve. They're not animals, you know.

But they ARE disabled, and they're going to need some help. Sometimes that help looks doggone weird to you. I know. I never would have thought "put a vest on with lots of super-heavy weights inside (medieval style!) and sing the same ONE line to a song over and over while giving my child a modified noogie" would be a sensible thing to do in public in ANY situation. Um, but it is. I promise-swear that I'm not trying to creep you out by acting weird like this; but this just helps my kid calm and acclimate a bit and I'm tired of him screaming and running. I don't know what's freaking him out right now (because he can't speak or sign yet), but I know this often helps. So... deal with it.

Would I have wanted to know Woodjie was autistic before he was born? Yep. Do I want YOU to know if your child is? Depends on what I think you'll do with the information. Either way, I can't imagine that a physician or nurse withholding KNOWN medical information from a parent is entirely ethical. It doesn't matter what the physician wants. I don't like the way some tests are used as a means to eliminate children with disabilities, but if the tests are taken and the results are in, I just couldn't see hiding what they have to say.

6 comments:

  1. I was having this discussion with a few girlfriends this weekend, actually. I said that I would probably pass on the test for Downs - it would be helpful to be able to prepare for a child w/ DS, but I would rather be unprepared than to have the amniocentisis cause a miscarriage. I was so very saddened that no one else shared my views. Some of these women are doing expensive, emotionally draining infertility treatments and I was disgusted that even someone who has been struggling to conceive for YEARS would abort for DS. Just sick, in my opinion. I'm still shaking just thinking about it.

    I love information. Information is great. If I ever have a child, I'd love to know everything - good and bad - before he is born. I was tempted to disagree with you and say that the problem isn't necessarily that information, but rather what one does with it. But, come on: tests like that are just one more thing that will contribute to the pervasive collective expectation that parents "deserve" a perfect child, and that "imperfect" children are any less deserving of life.

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  2. Information is power and all patients should be given the right to make decisions concerning their health and that of their children. Whether I like it or not, whether I'm horrified by what others do with it or not is immaterial. My own moral compass says you don't terminate a pregnancy--ever, that you accept God's will for your life and that of your children as it comes at you. But I've accepted that this is not everyone's view. Let that be between them and God.

    My first two pregnancies were healthy, by my experiences with the doctors and hospitals were terrible. From day one, my wishes and thoughts concerning my pregnancy and delivery were secondary to what the doctors believed was best. The first OB was a power mad jerk who ran every test under the sun, without including me in the decision to do so. Some of them were invasive and uncomfortable. I had to ask for test results and sometimes got to wait for a month or more to get an answer. I had to steal peeks at my medical records because the one time a nurse caught me trying to look, she snatched it away and informed me that it was the doctor's property and that I was not entitled to see it (in those words). It seemed the only information I was allowed access to was that which the doctor deemed necessary to share. We had a huge parting of the ways when he insisted on induced labor and I put my foot down and said no as there was no medical reason for it, other than the fact that he didn't want to come in on a weekend. I wound up delivering with a different (female) doctor (on a weekend) who agreed that there was no reason for the induction.

    I read the article about doctors being allowed to select what they do and do not tell their patients about their pregnancies and could only think, "So they're going to legalize what doctors have been doing all along?"

    To contrast this--I used a midwife for my younger two, which meant the only tests done were those that would direct us toward the healthiest pregnancy and strongest baby. Though she had an ultrasound, she only used it if there a good reason came up or if the parents requested it. If we'd wanted extra tests, she would have sent off the lab work, but they were not considered routine. All the records she kept on my pregnancies were left out for me to see. "There are no secrets here," she and her nurses said. "This is your information and we'll even make you a copy of all of it if you want it for your own records." She explained everything she did, offered me books from her library if I wanted to know more. All test results were disclosed as soon as they got them. The atmosphere of mutual trust was incredible. Why is this not the norm?

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  3. all reasons i didn't get the tests...i'm not gonna murder my baby because of some test that is possibly wrong...or right for that matter...

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  4. You know, your kids are SO lucky to have you for a a mom. If they don't realize it now, that will someday! They are so, so, so lucky, Mrs. C. You know what is best for them because you are with them day in and day out. I get all kinds of advice from people that don't live in my house. People just don't understand when they are not living with it day to day.

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  5. As a parent of a child with Down syndrome, I whole heartedly agree that the information should NOT be used to kill a baby. The fact that 92 to 95 % of babies with Down syndrome are aborted just makes me crazy!!!!

    Now, there are new studies about the fact that the placenta can have a genentic defect and the baby be absolutely typical! This happens quite often in Trisomy 18 pregnancies. How many babies have been aborted by parents who think that they are carrying a child with a genenrtic defect when it is actually the placenta that had the defect all along?

    Not to mention the fact that the tests can and are wrong many times. Mine were all completely normal. I did not have an amnio because all of my other tests came back fine. Frankly, I think the triple screen is useless for anything other than cystic fibrosis.

    Now playing devil's advocate, I would rather a parent have the information about possible genetic disorders to be able to make decisions about their baby. If they do not believe in abortion, but KNOW they are unable or unwilling to raise a child with a disability, there are people waiting for years to adopt special needs children. The baby can have a loving home waiting for them, even if it isn't that of the birth parent.

    I think that children are looked at as accessories. Unfortunately, people have children almost as an afterthought or because it is what they are "supposed" to do, or because everybody else is doing it. The emphasis on perfection is abother issue. Along with the fact that the young people who are becoming parents now are of a generation that feels that they are entitled to everything, including the perfect child. If you are of the oppinion that you are going to abort your child because it will be extra work, you aren't ready to be a parent IMHO.

    There ARE no guarantees. Just because your child is born healthy and "perfect" doesn't mean that they will not develop autism, epilepsy, cancer, become addicted to drugs, or have mental health issues! If you aren't ready for any of these things, use birth control.

    Now, I also have to say this....in the Down syndrome community (as in many others) we are trying to get people to use "people first" language. When speaking of people with Down syndrome, please use child with.....girl with....boy with....etc. Try not to use things like "they suffer from, he/she is Down syndrome, Down syndrome children/people, etc."

    I know it is picky, but it is an effort to get people to see our children as just that, children first, NOT their genetic make-up. FYI too - in England Down's is acceptable, not so much in the U.S. Some people also get upset over the abreviation DS - not very many though. Just letting you know so there aren't a bunch of people streaming in to jump on you about it. :)

    Thank you for this post!!!! Hope you are all doing well.

    Steph and Christopher
    www.ourlittlemanhasmoore.blogspot.com

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  6. Here in Australia there was (still is) a huge debate raging over a very late term abortion (32 weeks) of a baby which tests showed had dwarfism.
    The mother was suicidal, hence the legal abortion.
    Problem was autopsy showed the baby didn't have dwarfism or any other abnormality.

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