Genetic screening-keep calm people-just venting

[Jodi]

First - this is a vent... please don't turn this into an abortion debate people - I'm just a little frustrated and wanted to share some of my thoughts lately on the future genetic screening.

Okay... I'm taking a biology class and there have been many references to genetic prescreening, the advances made, and how we may be able to eliminate such problems (births) in the future.

Great - eliminating the Ryans of the world WOULD make it such a better place (sarcasm intended). Oh yeah, then there will be more money to educate the "smart" kids, so it won't be wasted on the genetic mishaps of the world. Then we can also get rid of state and fed services because, c'mon, can they really hold a job?

If we speed up the process now and really get the number of births down, then we can start phasing out programs soon. The lower the population, the lesser of the need for services. Am I making any sense?

I'm not saying anyone wants to become pregnant with a child that has genetic problems. But why, for some, is it "game over" I'm never gonna get that am I

In Biology, it is discussed how much we have evolved. We are "smart" and have made great advances in the last two-three hundres years. But in advancing to achieve more, more efficiently, to satisfy our needs, where and when does our humanity come in to play? Another class I took (dealing with individual rights) it was argued that a person doesn't have rights until they are able to exercise their rights (I was trying to figure out when Ryan is granted his rights to "be"). The exercise of rights argument is kinda weak to me because if you are 30 and in a comma - you can no longer exercise your rights, unless you have a living will.... I'm getting off track - sorry.

I know that this is a crazy and probably not an appropriate comparison - but I'm thinking of Nazi Germany, and the Jews - they became less than human in the eyes of Hitler and his followers. With the genetic screening, are our kids less than human. Is Ryan not whole because he is flawed from having one freakin extra chromosome I do recall reading that back in those days, Americans frequently experimently on children and adults who were disabled - we were not much better than the Nazi's in that respect.

Okay - I'm done... thanks for listening.

[Alice]

Jodi,

Just a little bit of history in a very simple way:
Adolf Hitler was a very sick and dangerous man who was afraid of Jews (he did see very smart people in Jews, so that is why he wanted to destroy them), Jews would never follow his crazy ideas like many others.

Your Biology class is created by other crazy people and I am very sorry that you are in that class.

I see why doctors ask us to perform Amnio to eliminate number of DS kids to be born, so government would not spend so much money on our kids.

Alice

[Jodi]

Hey Alice ~

I spent hours and hours (and cried and cried) at the U.S. Holocaust memorial in August in 2005. There was an exhibit on children and disabled children - just horrible!!

[Kristen]

Jodi, I know where you are coming from. From time to time in my schooling to becoem a nurse this comes up and it is SO HARD for me to bite my tongue. OB was the toughest - the teacher kept going on and on about the grief of parents who's children had a diagnosis and how devistating it is and how they have to make horrific decisions - I almost raised my hand and asked if she wanted me to do a five minute lecture on exactly what it feels like since she could only guess and her type of pity and attitude was not helpful - UGH! I know wha tyou mean about the thoughts that cross your mind. I don't want to get into a debate, either, but seriously, there are WAY bigger drains on the budget that kids like ours that need help! What about all the money that goes to people who sneak in here and are not even citizens and we pay welfare, medicaid, education, etc. That's a heck of a lot more than disabled children will ever use up and my husband (and I in the past and future!) work hard to pay our taxes and into Social Security. I do not feel one iota badly about my child using some of the resources my family busts their butts to contribute to. Whenever I hear the "drain on society" line I roll my eyes. I think that is such a weak argument it couldn't hold a feather.

[MB]

We are always here to listen. Vent away.

mb

[momofrussell]

YES.. Vent away Jodi! That would suck having to listen to that!

A.

[Emilysmom]

For Jodi AND Kristen...........I'm sorry you have to pay to sit in a class and hear such foolishness!!!!! Are either of these classes where you would feel comfortable speaking up? Maybe it would HELP for the students to hear from someone who KNOWS what they are talking about? A drain on society? PLEASE.

Vent away. Again, I'm sorry you have to hear it.

Susan

[kellyds]

I've said it before and I'll say it again . . . the world is a brighter place with Joshua in it! . . . and Emily, and Russell, and Ryan, and so on . . .

Some people will never get it.

[rickismom]

Actually, BEFORE Hitler attacked the Jews, he killed off many people livng in homes for the "R", and some with mental illness. When he saw that he was able to get away with it without raising a hue and an outcry, he then attacked the Jews.

I am afraid that in the future we will see a denial of free therapy (in the US) for children not aborted after pre-natal diagnosis. I hope not. But if society keeps going the way it is, with emphasis on "You are worth what you make" we may reach it sooner than we think....

[Chris]

I am afraid that I have to agree with Rickismom. I can see a time when our kids who were diagnosed prenatally will be denied services due to their pre-existing condition. My insurance company denies paying for speech, occupational or physical therapy because they claim every delay is due to her cognitive impairment. Basically, she is denied solely because she has Ds.

I have mixed feelings about prenatal testing because women are not fully or accurately informed about the potential of their children. Of course, the real shame is that people don't understand that every life is valuable and worthy.

I also have mixed feelings when we (the Ds community) concentrate our efforts on putting the high acheivers with Ds in the spotlight. Yes, it is truly amazing what some people with Ds accomplish but what about the ones that aren't ever going to be independent adults. What about the ones who are most affected by Ds? I believe those individuals are just as valuable.

My daughter is really smart. I think she is marvelous but she isn't a Ds superstar. I think she has potential to catch up with many of the kids with Ds who are barely lagging behind their typical peers but maybe she won't and that is okay. I know she is one of God's children and He has a plan for her. I am always astounded that she has such a profound effect on people. She has such a sweet spirit. I wish everyone could see how blessed we are to have her in our family.

Chris

[Debbie]

It must be hard to be in a classroom and hear that dribble. I would think the impulse to say something must be harder since you may think you are the only one who thinks the way you do and feel the way you do. You might be surprised that there are some other people who would have simular reactions and feelings.
You just never know though.

I feel the same way, sort of. I mean, I feel like that too when people lump me in with other adults who have Down syndrome. We are all different when it comes to our talents and abilities. When they hear I can read and write well that just compounds the problems because then they think I can do anything and really I do have my disabilities. It is especially harder when they find out I am not able to work. My life may be different but that doesn't mean I am not able to find productivity and some type of fullfillment.

The biggest thing is the condescendition. I can't stand that. I always feel like I have to prove myself. I felt that way alot when I was much younger. I still do now.
I just get tired though and say what I mean these days.

You aren't the only one getting off topic.

[rickismom]

Chris, although my daughter is thank G-d doing very well, it is a lot of sweat and tears as well as a decent IQ (she tests in the low range of mild retardation). Not a superstar. Once when Down Syndrome News and Update (put out by Sue Buckley, Down Ed, England--- a VERY good magazine) had an issue with two stories of high functioning kids, I wrote and asked that if a child is above normal level of DS it should be mentioned, and that they should be telling us more of what the "normal" is, --- and relate also to lower-functioning kids.
They replied that our view of what is normal is slowly changing AND that new parents need the encouragement. Whoever, they have been adding in more notes about twhat is "Normal" , and have been trying to get more articles on what works with lower-functioning children--- as well as articles on atypical situations.

I know that I try to be carefull who I brag to in our DS group--- I try to keep a low profile, as surely many moms don;t have the time to teach their kids as much as I do..

But this is a problem that many of us really do need to be aware of and address.

[Jodi]

Thank you all for your thoughtful posts. I do fear the future and the continued slippage of tolerance. Why do I even have to use that word? - it is ugly - like we have to teach ourselves to accept one another. But I thought we have evolved so much... UGH! I'm just going to try to tolerate this class for now LOL! That's talking out of both sides of your mouth, isn't it?!

I am taking on-line courses right now, and when the timing is right, I will hopefully be able to do some of my own educating.

[CC]

This is truly a very tough subject, and I am sure a very hard one for you to sit through. Vent away anytime

CC ~