There was an interesting book about raising a child with severe disabilities recently published. I enjoyed it in part because it was so honest -- full of love but also full of sadness and frustration. So human.

"No Ordinary Boy," by Jennifer Johannesen.

Anonymous wrote:

Anonymous wrote:So if I get pregnant, and the doctor says my baby is going to have downs, spina bifida, born without a brainstem, or something like that, my first question will be "is it too late to terminate the pregnancy?" Sorry, but tough shite if you dont like it.

I'm not understanding what you are trying to say.

You have a problem with people terminating when they hear the bad news or, though shit if you get bad news you shouldn't have a choice?

I think it's pretty clear that I would personally opt to terminate if possible. I'm not saying I wouldnt love a child born with problems, but I wouldnt choose to have that child if there is a choice. As far as I am concerned, it's a choice up until the fetus is viable without continuous and permanent life support outside the womb.

Anonymous wrote:

Unfortunately this is just not true. It is quite rare for an adult with DS to live completely independently. I used to teach elementary special education and was really delighted to see how well my students with special needs (including students with DS) could be included and supported. Then I transferred to the high school level and it was a whole other world. While in elementary school it was easy to get typically developing kids to interact with my students with severe needs, in high school the only students who would willingly interact were students who wanted to put the experience on their college applications. Inclusion was really challenging. Parents were really worried about how to make sure their kids were supported when they were adults and the parents were retired or deceased. Based on my experience in secondary schools I had an amnio with one pregnancy and CVS with the other. I didn't have to make the tough decision of what to do if I were pregnant with a child with a severe disability, but I am pretty sure I wouldn't have continued the pregnancy. I would never post this on the SN boards, but because this is the OFF topic boards I think parents who are faced with the decision should speak to parents with older children with disabilities not just parents with toddlers or elementary school students.

Are you seriously trying to refute the referenced poster - a MOM of a DS child - with your limited experineces as a teacher and broad, sweeping generalizations about a limited group of people that you happened to be exposed to? The previous poster was not citing statistics, she was saying that many, many DS children grow to live independently or in group homes. Many do. How does what you post negate that statement? I'm sure many others also have parents who are concerned about thier future, etc. Re-read your post and you will see how unhelpful it is - - particularly after 15 pages of this thread. Get a grip and just self-edit next time.

I appreciate the teachers post as it gives a very real perspective. PP, I think you need to chill.

Anonymous wrote:So if I get pregnant, and the doctor says my baby is going to have downs, spina bifida, born without a brainstem, or something like that, my first question will be "is it too late to terminate the pregnancy?" Sorry, but tough shite if you dont like it.

I'm not understanding what you are trying to say.

You have a problem with people terminating when they hear the bad news or, though shit if you get bad news you shouldn't have a choice?

I think everyone needs to just mind their own business and not judge others or get involved in their decisions. I have a friend who has a son with a genetic disease. They were initially told that the child would live up to age two. He is now 8 years old. They love their child, but it is a hard road to travel. There is very little support, especially if you do not have immediate family in the area who are willing to chip in and help out. My friend had to quit her job so that she can assist her child and battle with the insurance companies who are unwilling to pay for equipment and services. This alone is almost a full-time job. The little guy is often bullied at school and has already been moved from two schools and has few friends. The financial and emotional implications of raising a severly disabled child when you have little to no support are often overlooked by people. You cannot judge unless you have walked in their shoes and even then the severity of the disability can really change your life and family dynamics. My friend's little boy may not live to see his teens and I cannot imagine how difficult it will be to say good-bye or even having to live with the possibility of your child dying at any given day. I guess one learns coping mechanisms. I would never judge a woman in regards to her decisions regarding a pregnancy. I do feel though that we as a country need to do more to help parents who are faced with raising a severely disabled child.

So if I get pregnant, and the doctor says my baby is going to have downs, spina bifida, born without a brainstem, or something like that, my first question will be "is it too late to terminate the pregnancy?" Sorry, but tough shite if you dont like it.

Unfortunately this is just not true. It is quite rare for an adult with DS to live completely independently. I used to teach elementary special education and was really delighted to see how well my students with special needs (including students with DS) could be included and supported. Then I transferred to the high school level and it was a whole other world. While in elementary school it was easy to get typically developing kids to interact with my students with severe needs, in high school the only students who would willingly interact were students who wanted to put the experience on their college applications. Inclusion was really challenging. Parents were really worried about how to make sure their kids were supported when they were adults and the parents were retired or deceased. Based on my experience in secondary schools I had an amnio with one pregnancy and CVS with the other. I didn't have to make the tough decision of what to do if I were pregnant with a child with a severe disability, but I am pretty sure I wouldn't have continued the pregnancy. I would never post this on the SN boards, but because this is the OFF topic boards I think parents who are faced with the decision should speak to parents with older children with disabilities not just parents with toddlers or elementary school students.

Are you seriously trying to refute the referenced poster - a MOM of a DS child - with your limited experineces as a teacher and broad, sweeping generalizations about a limited group of people that you happened to be exposed to? The previous poster was not citing statistics, she was saying that many, many DS children grow to live independently or in group homes. Many do. How does what you post negate that statement? I'm sure many others also have parents who are concerned about thier future, etc. Re-read your post and you will see how unhelpful it is - - particularly after 15 pages of this thread. Get a grip and just self-edit next time.

Anonymous wrote:NP here and as a parent of a toddler with Down syndrome, I'm still reeling from the PP who terminated a child w/ T18 and said that she didn't consider the fetus to be human because it had too many chromosomes and thus, was not human.

My sweet, smart, loving child with Down syndrome has too many chromosomes, too. The amount of outdated and outright wrong information about children and adults with Down syndrome in this threat is staggering. It is expected that most children born today with Down syndrome will function much better as adults than most adults with DS currently do. This is partly due to improved medical interventions for the most common physical disabilities: i.e the vast majority of heart conditions associated with DS are perfectly correctable now with one surgery in infancy. All of the most prominent scientists who are doing research for treatments for the cognitive effects of Down syndrome believe that a medical treatment (i.e medication) will be development in the near future that will greatly improve the cognitive abilities of people with DS. Eventually, there will be a complete treatment for the cognitive impairments associated with DS and normal cognition will be restored. It is likely this will happen in my child's lifetime. Perhaps she will be an adult, maybe even an older adult, but it is very likely to happen. Many, many adults with DS live independently or mostly independently as adults and work in satisfying and productive jobs, even with current functional levels. Many others live quite happily in supported group homes. The future for children with DS has never looked so promising. And the joy that just emanates from most children with DS...if you could bottle that... if only the rest of the world lived with such pure joy.

Not human? Just look at this sweet child and tell me she's 'not human': http://youtu.be/3ld_UEyxE8A

Unfortunately this is just not true. It is quite rare for an adult with DS to live completely independently. I used to teach elementary special education and was really delighted to see how well my students with special needs (including students with DS) could be included and supported. Then I transferred to the high school level and it was a whole other world. While in elementary school it was easy to get typically developing kids to interact with my students with severe needs, in high school the only students who would willingly interact were students who wanted to put the experience on their college applications. Inclusion was really challenging. Parents were really worried about how to make sure their kids were supported when they were adults and the parents were retired or deceased. Based on my experience in secondary schools I had an amnio with one pregnancy and CVS with the other. I didn't have to make the tough decision of what to do if I were pregnant with a child with a severe disability, but I am pretty sure I wouldn't have continued the pregnancy. I would never post this on the SN boards, but because this is the OFF topic boards I think parents who are faced with the decision should speak to parents with older children with disabilities not just parents with toddlers or elementary school students.

I know this is DCUM but please let's be kind to one another and assume the best, rather than the worst, motivations.

I'm with you, but regrettably I think any kindness in this thread was gone many, many pages back.

Anonymous wrote:

PP, are you the one from NOVA? In case you aren't, and you live in DC, please look into Katie Beckett health care waiver. I posted about this a few pages back, but in case you missed it, I strongly urge you to see if your kids are eligible. Even with all the resources at your fingertips, raising a disabled child will never be the same as raising a NT kid, but having social services like KB waiver will definitely help bridge that gap. Sending big hugs to you.

Yes, I'm the PP from NOVA. I appreciate you posting about the Katie Beckett health care waiver. Unfortunately, the waitlist in VA is quite long, the funding is quite short for the program we do qualify for and many providers won't accept it. It's ironic that our kids aren't 'bad' enough for most programs but if we don't do anything now, they will be in future. I think of it like the unsound tree in your backyard. Your insurance company won't pay to have it removed but they will pay if it falls on your house. So, you suck it up and pay the money to have it removed because the thought of it landing on your house is just unacceptable. Same with our kids. To do nothing now will mean they have even more, costly problems in the future. I know a lot of pepole in our same situation.

So, sadly, PP gets no help. Point made. Pages and pages of people talking about all of the resources and help out there and that that should have no bearing on a decision to keep or not to keep the child. In theory it all sounds good and then when you try to get the help you just don't qualify, you deal with wait lists and so on....

PP, are you the one from NOVA? In case you aren't, and you live in DC, please look into Katie Beckett health care waiver. I posted about this a few pages back, but in case you missed it, I strongly urge you to see if your kids are eligible. Even with all the resources at your fingertips, raising a disabled child will never be the same as raising a NT kid, but having social services like KB waiver will definitely help bridge that gap. Sending big hugs to you.

Yes, I'm the PP from NOVA. I appreciate you posting about the Katie Beckett health care waiver. Unfortunately, the waitlist in VA is quite long, the funding is quite short for the program we do qualify for and many providers won't accept it. It's ironic that our kids aren't 'bad' enough for most programs but if we don't do anything now, they will be in future. I think of it like the unsound tree in your backyard. Your insurance company won't pay to have it removed but they will pay if it falls on your house. So, you suck it up and pay the money to have it removed because the thought of it landing on your house is just unacceptable. Same with our kids. To do nothing now will mean they have even more, costly problems in the future. I know a lot of pepole in our same situation.

I was jarred by the "not-human" language, too, but I don't think you should read too much into it. I think that poster was in a horrible situation, struggling with a difficult decision, and was looking for a rhetorical argument to offer to support her very reasonable decision to terminate. Having a kid with T18, assuming the child even survives the pregnancy, is beyond a challenge, both for the child and the family. Of course a child with a chromosomal abnormality is human, very much so. I'm sure that poster did not mean to offend, and probably would take back those words with respect to any child who was born.

I know this is DCUM but please let's be kind to one another and assume the best, rather than the worst, motivations.

NP here and as a parent of a toddler with Down syndrome, I'm still reeling from the PP who terminated a child w/ T18 and said that she didn't consider the fetus to be human because it had too many chromosomes and thus, was not human.

I agree with you, NP, as I was also reeling after reading that post and fondly thinking of my own very-human baby born with T18. After reading that, I tried to write-off this thread, but for some reason I was pulled back. I'm glad I was, to the extent I was able to read your informed post. Thanks for posting and thanks for your positive attitude. Best wishes to you and your family.

NP here and as a parent of a toddler with Down syndrome, I'm still reeling from the PP who terminated a child w/ T18 and said that she didn't consider the fetus to be human because it had too many chromosomes and thus, was not human.

My sweet, smart, loving child with Down syndrome has too many chromosomes, too. The amount of outdated and outright wrong information about children and adults with Down syndrome in this threat is staggering. It is expected that most children born today with Down syndrome will function much better as adults than most adults with DS currently do. This is partly due to improved medical interventions for the most common physical disabilities: i.e the vast majority of heart conditions associated with DS are perfectly correctable now with one surgery in infancy. All of the most prominent scientists who are doing research for treatments for the cognitive effects of Down syndrome believe that a medical treatment (i.e medication) will be development in the near future that will greatly improve the cognitive abilities of people with DS. Eventually, there will be a complete treatment for the cognitive impairments associated with DS and normal cognition will be restored. It is likely this will happen in my child's lifetime. Perhaps she will be an adult, maybe even an older adult, but it is very likely to happen. Many, many adults with DS live independently or mostly independently as adults and work in satisfying and productive jobs, even with current functional levels. Many others live quite happily in supported group homes. The future for children with DS has never looked so promising. And the joy that just emanates from most children with DS...if you could bottle that... if only the rest of the world lived with such pure joy.

Not human? Just look at this sweet child and tell me she's 'not human': http://youtu.be/3ld_UEyxE8A

Anonymous wrote:

Who in the hell is forcing women to terminate pregnancies?! I'm 04/22/2012 09:14 and am very pro-choice but that doesn't mean I think women should be coerced or force to abort! Speak up where this is happening and I'm sure we can get DCUM to start a rally.

If, instead, your point is that women shouldn't terminate based on their perception that having a SN child is difficult and costly, well, I think everyone knows by now that my experience shows that it is difficult and it is costly. If I were to get support I'll be happy to join your chorus that it's not different than raising a typical child but, right now, that's just not true. It's very hard and while I love my kids and the experience has made me a better person, I wouldn't wish it on anyone.

Still waiting for those organizations people said would provide support to families like mine....

Well, from reading this thread it would seem that a lot of people feel it is a person's civic duty to rid the world of disabled kids by aborting. Just to eliminate kids from being a burden on everyone around them, of course. So PP do you wish you had known of your children's disabilities so you could have terminated them? How can we really make generalizations about all disabled kids being so horribly financially and emotionally draining that people should terminate when the types of disabilities a person can have are so variable.

I have NEVER asserted that people should terminate SN kids. I firmly believe that abortion is strictly a personal decision. What I have been vocal about is refuting that bullshit assertion that raising SN kids is not much different or more costly than typical kids. Maybe not for the wealthy but it is definitely different for those of us who aren’t.

Over the last few days, I've read every post on this thread. I can't recall a single instance where someone seriously advocated ridding the world of disabled kids. I've seen plenty of posters proclaiming that's what people are trying to do but I've not seen anyone advocating for it. I've also seen a lot of posts that if you don't think you can raise a SN kid that you shouldn't have kids at all. But, stating that it's our "civic duty to rid the world of disabled kids by aborting"? No, that' not what this thread has been about. Your repetition of this reminds me of the “death panel” bullshit the republicans spun to derail health care legislation.

Do I wish my I would have aborted my SN kids? I actually did have a choice and could have but my DH and I thought the better choice was to keep them. If I had to do it over again, one of them I would definitely not want to terminate. One of them, sometimes I wish I had. Yeah, I’m sure you’re horrified by that – flame away. I don’t care about your opinion. You’re not walking in my shoes, paying my bills or wiping my kid’s ass because he can’t do it for himself. Why shouldn’t someone spare themselves from what I’m going through? Why don’t you put your money where your mouth is and hook me up with someone who can provide us the assistance some say is readily available for families like mine? When you can make raising SN kids as easy as raising typical kids, I’ll listen to you. Until then, you have no credibility.

PP, are you the one from NOVA? In case you aren't, and you live in DC, please look into Katie Beckett health care waiver. I posted about this a few pages back, but in case you missed it, I strongly urge you to see if your kids are eligible. Even with all the resources at your fingertips, raising a disabled child will never be the same as raising a NT kid, but having social services like KB waiver will definitely help bridge that gap. Sending big hugs to you.