Down II
A few days ago I published a post about Down syndrome, specifically about telling parents that their child has Down syndrome. Although there were some nice comments, there were several that gave me some flak. Normally I just let such criticism slide off me, but I think some of this criticism was unfair and feel duty bound to defend myself.
The main criticism seems to be that I was being too pessimistic, or not giving the parents enough hope. Anecdotes about high functioning Down syndrome patients were used to convince me, I think, to give a proposed better outlook for kids with Down syndrome. I was accused of setting limits on what the child could accomplish. One commenter told me to stick to the medical facts and use up to date sources. Another said I had an "insulting and demeaning attitude" about Down syndrome. Hmmm.....am I really that much of a creep?
When I talk to parents of Down syndrome children I tell them congratulations and make comments about how cute their baby is, just like I do with parents of kids with 46 chromosomes. I agree that parents should try to optimize their child's development. I try to be as positive as I can, but I can't act like everything is hunky dory, as some commenters seem to want. I "dispense the facts of Down syndrome," as one commentor requested, and those facts are, as given in the 2006 edition of Smith's Recognizable Patterns of Human Malformation, that the average IQ is 25 to 50, perhaps lower in older patients. There is about a 40% chance of a heart defect. Sure there are some exceptions, but when I counsel parents I have to do so on the basis of facts and studies, not on the basis of anecdotes about exceptions.
There are no parents who take the news that their child has Down sydrome as good news, regardless of how it is presented. They universally consider it bad news - many of them go through a grieving process - and that's not because we present it in a negative way, that's because the news that your child will have intellectual deficits and a higher risk for things like heart defects, leukemia, and atlanto-axial instability is not good news. And the way to give bad news to parents is not to try to cheer them up with anecdotes about exceptional high achievers, but to give them accurate information and point them in the right direction for optimizing their child's development.
Should I modify my talk so I tell parents that there are some unusual exceptions who go to junior college? Maybe, although I'd like better evidence than a comment on a blog that it is true. Also, please realize that in my patient population it is more common for a young black man to go to jail than to college. Those exceptional cases who go to college aren't likely to come from my patient base. Perhaps I should just say that with optimal developmental stimulation some Down syndrome kids are doing better than historically we thought they could.
I don't have much good to say about people who discriminate against those with disabilities, but neither do I have much use for doctors who wimp out on tough conversations with families by giving overly optimistic information. The commenter Karrvakarela said it best: "There is no room for false hope but we need to advocate a positive attitude to the condition."
The main criticism seems to be that I was being too pessimistic, or not giving the parents enough hope. Anecdotes about high functioning Down syndrome patients were used to convince me, I think, to give a proposed better outlook for kids with Down syndrome. I was accused of setting limits on what the child could accomplish. One commenter told me to stick to the medical facts and use up to date sources. Another said I had an "insulting and demeaning attitude" about Down syndrome. Hmmm.....am I really that much of a creep?
When I talk to parents of Down syndrome children I tell them congratulations and make comments about how cute their baby is, just like I do with parents of kids with 46 chromosomes. I agree that parents should try to optimize their child's development. I try to be as positive as I can, but I can't act like everything is hunky dory, as some commenters seem to want. I "dispense the facts of Down syndrome," as one commentor requested, and those facts are, as given in the 2006 edition of Smith's Recognizable Patterns of Human Malformation, that the average IQ is 25 to 50, perhaps lower in older patients. There is about a 40% chance of a heart defect. Sure there are some exceptions, but when I counsel parents I have to do so on the basis of facts and studies, not on the basis of anecdotes about exceptions.
There are no parents who take the news that their child has Down sydrome as good news, regardless of how it is presented. They universally consider it bad news - many of them go through a grieving process - and that's not because we present it in a negative way, that's because the news that your child will have intellectual deficits and a higher risk for things like heart defects, leukemia, and atlanto-axial instability is not good news. And the way to give bad news to parents is not to try to cheer them up with anecdotes about exceptional high achievers, but to give them accurate information and point them in the right direction for optimizing their child's development.
Should I modify my talk so I tell parents that there are some unusual exceptions who go to junior college? Maybe, although I'd like better evidence than a comment on a blog that it is true. Also, please realize that in my patient population it is more common for a young black man to go to jail than to college. Those exceptional cases who go to college aren't likely to come from my patient base. Perhaps I should just say that with optimal developmental stimulation some Down syndrome kids are doing better than historically we thought they could.
I don't have much good to say about people who discriminate against those with disabilities, but neither do I have much use for doctors who wimp out on tough conversations with families by giving overly optimistic information. The commenter Karrvakarela said it best: "There is no room for false hope but we need to advocate a positive attitude to the condition."
posted by neonataldoc at 4:25 PM
169 Comments:
I had no qualms with how you handled your original conversation, so I want you to know that.
And I especially liked the way you put it at the end of this post. Makes sense to me.
But you're also dealing with a person in ME that appreciates the truth. The hardball answers. The dirt and the grit. I almost rather have a negative dx proved wrong, than a positive one.
Yet, I don't think that's pessimistic, just realistic. Don't sugar-coat to me what's wrong with my kid. Tell me straight up so we can fix it, or handle it, or accommodate it. I hate fluff.
Not everything is "happy ever after." Certainly not Downs.
Straight forward based on facts is always the best approach, and I'm speaking as a parent of 2 girls with a genetic disorder (granted, not as severe as Downs...).
Thanks for your thoughts. I appreciate reading them.
I didn't see anything wrong with that post.
You wrote in essence to say that you were uncomfortable with giving the diagnosis and would like to know of a better way to approach a difficult discussion. Like you said, a diagnosis of DS is never a happy diagnosis.
I'm not looking at the post now but I think I recall that while you did give the diagnosis (as you are expected to do) you also stated that there are varying degrees.
I agree mostly with what you said about having an obligation to give the parents detailed information about the diagnosis. That's your job.
Giving an overly positive outlook can also be just as detremental to the parents I believe.
I think it's important that they are informed of the medical diagnosis and what past studies have shown and then it is up to the PARENTS to see that their child is given every chance possible to reach their fullest potential.
If neodoc were a genetic specialist then maybe we should lambast him with accusations of being insensitive but for his field of expertise I think he did what was necessary which was to be honest with the parents about the diagnosis.
You also need to take into consideration that Dr's are humans too and not infallable. If someone does not have first hand experience with a happy, well adjusted, college atttending teen or adult with DS it isn't entirely possible for them to definitevly say "it's possible that your child may attend college" especially when the statistics, to a large mahority, tend to show otherwise.
I am so glad to see that there are so many support grous and resources nowadays for children with Down's, I think that is very important and will play the largest role in seeing each of these children to their potential.
I'm just glad to know that you care enough to be sensitive to these parents feelings and want to know (from those with experience) if there is a better way to approach the subject.
Dawn
Well, that is the hazard of posting on a site which is accessed by people who are not physicians. Anybody who has not been tomedical school will put an emotional twist on things...and that includes nurses and paramedics....lets face it, they cannot process things that way a physician can.
In my experience, Down patients who are acheivers cannot be true trisomy 21s. If you are talking about someone who was in special ed and was somehow pushed into going to college, that is a different matter.
Physicians have such a difficult job. The same parents will sue you 10years down the line saying you gave them false hope.
Medical facts and statistics should be presented to parents. Down kids are not like other kids and the parents need to know that. Anyone here who says they are glad their kid is a Down kid and they did not want a 'normal' child are hypocrites.
I think this post fleshed out what you said to parents better than the previous post. I appreciate your follow up.
I think it's best to be honest. I wouldn't change a thing.
I would also like to share the downside of a physician being overly optimistic, especially in the beginning.
My son was disabled from the start, although for many years they didn't know what caused his issues and just called it cerebral palsy. My husband at the time, would cling to anything the physicians would say, that was remotely positive and ignore the other 95% about what he couldn't or would never be able to do. To this day, he is still stuck in the "Denial" stage of the grief process. As a mother and his former wife, I certainly don't see any need to correct him on what he thinks our son "might" be capable of, although to this day, he's never been capable of doing any of those things. I don't think it's wrong to have hope, but it makes it more difficult to cling to an expectation or an exception, that isn't very likely to come true.
Even more problematic was my mother-in-law. I can't tell you the number of times she would ask me, "When is he going to be normal?" I would say never but yet she would still ask again and again, and still asks to this day, and my son is nearly an adult. I know she doesn't do it to be mean, but I don't like the fact that she brings this up in front of my son, who is delightful and loving in his own right.
Don't change a thing. You know what you are doing.
I'm the parent of a child with Down syndrome,and I was led to your blog because of the post about Down syndrome a couple of days ago.
Since then, I have read your blog from beginning to end. I find your writing to be eloquent and well-thought out, and I would have had no qualms about allowing you to treat my daughter during those first years of intensive medical intervention that she had.
One would argue that you cannot be a physician without going to medical school, and without a number of years of experience.
However, I would offer up to you that you cannot be the parent of a child with Down syndrome without --well, being the parent of a child with Down syndrome.
I am on the other side of your world--I address first year medical students, and offer them seminars which help them with the emotional aspects of delivering a diagnosis.
Professionals must truly understand the impact of their words -- there are parents who remember a simple sentence uttered from a physician years and years ago, and recount that as a very viable part of their child's history.
Baby Doe's story may have been much different had a doctor not told his parents that he would be severely retarded.
My daughter was also born with esophageal atresia and a tracheo-esophageal fistula, resulting in immediate surgery after birth, as well as nearly two dozen more surgeries in the next 4 years.
Prenatally, I was told that she probably had T13 or T18, as there was no identification of stomach or kidneys.
Please believe me when I tell you that sometimes Down syndrome is VERY good news--even that first moment that it is confirmed. My reaction was "Thank God" -- thank God that's all it is.
And you should know and agree with me that one only needs to spend a couple of months in a NICU to know that there's lots of things worse than Down syndrome...LOTS of things.
While I agree with you that its not right for you to offer up a one in a million story about one child with Down syndrome that accomplished something incredibly extraordinary, I might also argue that its probably a good thing that we as parents of children both developmentally delayed and "typical" believe that our children will be the biggest, brightest, best...its that belief that encourages kids to do well, and that belief that allows us to pull ourselves up by our bootstraps when we need to.
Paige is one of those kids who is not "soaring" developmentally...in fact, I'd say we would kind of offer the term "meandering" when we talk of milestones with her.
What I've come to learn though, is that that number...that IQ score, that "age" that is assigned to her development, is much more important to you than it is to me.
Its irrelevant to me what she cannot do; as what she can do is immensely more important. She has a message to bring, and she has BROUGHT IT.
She is as she should be. Beautiful, innocent, strong, determined, and funny.
Perhaps the message that should be delivered should be as simple as "its going to be an amazing ride"...nothing more, nothing less. Don't predict what you cannot--that's the fairest way of all to deliver the news.
Betsy
Mom to Paige
www.bits-of-betsy.blogspot.com
p.s. to the poster who said "In my experience, Down patients who are acheivers cannot be true trisomy 21s." == there are so many things wrong with that statement, that I don't even know where to begin.
Wait...I know...Ds is chromosomal, diagnosed by a karaotype--its not like someone is playing "duck, duck, goose," and telling a parent their kid is it, lol. Ya either have T21 or ya don't--kinda like being a "little pregnant"
I think that you approached it pretty good. I have had several doctors that I knew ment well tell me super hopeful things about my son that ended up not coming to pass. When they did not come to pass I started blaming myself because I was not a good enough mom, that my son failed to achieves these things because I was doing something wrong. I had to come to terms with the fact that each kid is different and will have different outcomes.
Anonymous 10:18pm wrote:
"Well, that is the hazard of posting on a site which is accessed by people who are not physicians. Anybody who has not been tomedical school will put an emotional twist on things...and that includes nurses and paramedics....lets face it, they cannot process things that way a physician can."
I know some doctors, and a whole mess of nurses, who would disagree with you there ;)
There's nothing magical about med school, and physicians aren't automatons. ND is a thinking, feeling human being with a responsibility to present certain facts to parents. He can only decide for himself how to do this, based on the best advice of his colleagues, years of experience, thorough understanding of the condition and feedback from the community. Having read his blog since post 1, I feel certain there is a bit of heart mixed in there too.
"Anyone here who says they are glad their kid is a Down kid and they did not want a 'normal' child are hypocrites."
Steady on. It's not hypocritical to love your child and appreciate them for the person they are, the total person.
What you've seen in the comments to the previous post is the kind of fierce, protective love that is aroused by years spent in clinic waiting rooms, wards, neonatal and paediatric intensive care units, coupled with the same worries and doubts, fears and determination that every parent experiences.
I've met a boatload of parents who have children with DS, usually under less than favourable circumstances. None of them seemed particularly hypocritical to me.
Nice to see Rich (paedsrn) back.
I see this in another context as well, that is the 300-lb gorilla called "abortion".
Speaking only for myself, I find a lot of the emotional charge around T21 stems from the fact that many of these kids are killed before they are born.
best,
Flea
In my experience, Down patients who are acheivers cannot be true trisomy 21s. If you are talking about someone who was in special ed and was somehow pushed into going to college, that is a different matter.
Wow. The audacity. Achiever's? Ok, you set the bar. What must they achive to pass your humanity test? What qualifies them for hope? IQ scores? Written exams? Developmental milestones? Being human isn't enough for you, we must make sure they measure up to the stands you have set for them. So, pray tell, what would you expect of a 7 year old? What must they "be doing" in order to meet your requirements?
oh yeah....perhaps you could begin changing your views by recognizing people first language? They are "people WITH Down syndrome"...not "Downs kids". The DS is a tiny part of who they are. And cliche as this is getting to be, I highly doubt you would use the term "a leukemia kid" or a "cancer woman". Changing the language really does change your perceptions, it is a subtle reminder that these children, MY child...are people first.
Neonatal Doc,
I spent time in the NICU with my middle son, and found it to be a soul-crushing place. I understand that one way to handle such a place, day in and day out, is to quickly learn to live with yourself and your decisions. It is not a place for second guessing what-ifs. In fact, I wouldn't want a doctor who wasn't intelligent and self-assured.
Just please, sir, do not confuse your role as a man of medicine with a man new parents might look to for answers. If your goal is honesty, try this, "I am not familiar with children with Down syndrome, I do not have any personal experience, but I hear that the parents of such children love and desire them, and here is the number of a local support group of parents who can tell you more..." Then give them the number; if you email me with the location of your hospital I will even provide that information for you.
www.jennifergrafgroneberg.com
I think it is the sign of a truly wise man to recognize the limits of his knowledge, and I think any parent would appreciate that kind of honesty.
From what you've written it sounds like you handled it well. I found that when our son was in the NICU we wanted hard facts not stories. There was a social worker, who I know meant well, full of cheerful stories of how successful kids with DS were now. I just wasn't ready at that point and wanted time to mourn the "normal" baby we no longer had.
The statistic I've heard most often is that with the advent of early intervention programs and an end to routine institutionalization the average IQ of someone with DS has gone from 20 to 50. From severe MR to more moderate.
As a parent of a child with DS, I'm frustrated that to date most of the research efforts & money has gone toward prenantal detection of DS and not research into "curing" (for lack of a better term) DS. That has changed in recent years and there are a number of groups working on various health issues related to DS. Who knows what the future will bring. We are hopeful.
Anne
"Down syndrome patients"
"Down syndrome kids"
People with Down Syndrome are people first and not a DX. Wise doctors would dispense medical knowledge and leave the rest alone. Parents who have just experienced the joy of having a new baby and are receiving a DX of DS will learn all the truths about their child as the future unfolds. It's not your job to tell them what will happen in the future when you do not know yourself. There are no guarantees with any child of what the future may hold. "But what is cute at age 6 is less so at 16, and even less at 26." is true of any child.
Stick to the facts. Any more than that will reflect poorly on you and those in your profession. Any parent of a child with Down Syndrome has at least one story of ignorant things doctors have said to them.
I am one of those people who go to hospitals and talk about how to give a Dx of Ds. If you would like the information that I give to the hospitals I would be more than happy to send it to you. It is endorsed by NDSS.
I also wanted to give you a link to a short little video of people with Ds. http://www.ndss.org/content.cfm?fuseaction=NwsEvt.Article&article=1042
Anyway if you would like the information please e-mail me at Darcher@tconl.com
Dani
For BETSY:
Please know your facts before showing the world what a retard you are. Have you heard of the term mosaicism??? ( http://www.ds-health.com/mosaic.htm). It is probably too complex a word for you to process. May be you should have yourself karyotyped!
To others who stated that going through medical school is no great shakes, are you really serious when you compare a physician to a nurse. There is a reason why nurses, LPNs, RTs are called allied health personnel...thats because, thy are adjuncts to physicians. It is easy to be a nurse and live in you own little world, where you think you know everything, and you get your kicks by belittling residents. Please know your place. We appreciate your input, but thats that.
And I will say it again....people who have disabled/syndromic children, undoubtedly love their children (well not all, abuse rates are highest in handicapped children, and the perpetrator is usually a parent), but they are not elated that they have a child that is not normal. It is a compromise, and you take what you get. I know it sounds harsh, but then no one said the truth was easy to digest!
"There are no parents who take the news that their child has Down sydrome as good news, regardless of how it is presented. They universally consider it bad news - many of them go through a grieving process - and that's not because we present it in a negative way, that's because the news that your child will have intellectual deficits and a higher risk for things like heart defects, leukemia, and atlanto-axial instability is not good news."
That's very true, doc. As harsh as it sounds (and with all due apologies), nobody wants a bogus baby and the fact that they don't have a normal child comes as a disappointment to almost everyone. How they handle that disappointment , however, is what differentiates one set of parents from other, and also, to some extent, one set of outcomes from another.
As you said, it's our responsibility as physicians and patient advocates to encourage parents, give them accurate information and point them in the right direction for optimizing their child's development. Of course, physicians differ in their individual approaches to counselling and there is room for debate over how best to approach the issue. But it's important to remember that at the heart of all our endeavours is a family that's grieving and a child whose care we are responsible for.
Something for the medical professionals to read...it isn't about political correctness, it is about respect.
From Disability is Natural:
http://www.disabilityisnatural.com/peoplefirstlanguage.htm
"Using People First Language is Crucial!
People First Language puts the person before the disability,
and it describes what a person has, not who a person is.
Are you “myopic” or do you wear glasses?
Are you “cancerous” or do you have cancer?
Is a person “handicapped/disabled” or does she have a disability?
If people with disabilities are to be included in all aspects of society, and if they're to be respected and valued as our fellow citizens, we must stop using language that sets them apart and devalues them.
Children with disabilities are children, first. The only labels they need are their names! Parents must not talk about their children using the medical terms used by professionals. Educators must not use terms like "sped kids," "LD students," and other demeaning descriptors. Children in school are students and some receive special ed services.
Adults with disabilities are adults, first. The only labels they need are their names! They must not talk about themselves using professional lingo. Service providers must not use terms like "MR client," "quads," and other diagnostic terms.
The use of disability descriptors is appropriate only in the service system (at those ubiquitous "I" team meetings) and in medical or legal settings. Medical labels have no place---and they should be irrelevant---within families, among friends, and in the community.
We often uses a diagnosis to convey information, as when a parent says, "My child has Down syndrome," hoping others will realize her child needs certain accommodations or supports. But the outcome of sharing the diagnosis can be less than desirable! A diagnosis can scare people, generate pity, and/or set up exclusion ("We can't handle people like that..."). In these circumstances, and when it's appropriate, we can simply describe the person's needs in a respectful, dignified manner, and omit the diagnosis.
Attitudes and language changed as a result of the Civil Rights and women's Movements. The Disability Rights Movement is following in those important footsteps, and similar changes are occurring.
My son, Benjamin, is 18 years old. More important than his diagnosis are his interests, strengths, and dreams. He loves history, burned fish sticks, classic rock, and writing movie reviews---and he's great at mimicking actors and politicians! He's earned two karate belts, taken drama classes, and performed in five children's theater productions. Benj is attending college and wants to be a film critic. He has blonde hair, blue eyes, and cerebral palsy. His diagnosis is only one of many characteristics of his whole persona. He is not his disability. His potential cannot be predicted by his diagnosis.
When I meet new people, I don't disclose that I'll never be a prima ballerina. I focus on my strengths, not on what I cannot do. Don't you do the same? So when speaking about my son, I don't say, "Benj can't write with a pencil." I say, "Benj writes on a computer." I don't say, "He can't walk." I say, "He uses a power chair." It's a simple, but vitally important, matter of perspective. If I want others to know what a great young man he is---more importantly, if I want him to know what a great young man I think he is---I must use positive and accurate descriptors that portray him as a whole, real, wonderful person, instead of as a collection of "defects, "problems," or "body parts."
A person's self-image is strongly tied to the words used to describe him. For generations, people with disabilities have been described by negative, stereotypical words which have created harmful, mythical perceptions. We must stop believing (and perpetuating) the myths---the lies---of labels. We must believe children and adults who have been diagnosed with conditions called "disabilities" are unique individuals with unlimited potential, just like all Americans.
People First Language isn’t about being “politically correct.” It is, instead, about good manners and respect (and it was begun by individuals who said, “We are not our disabilities!”). We have the power to create a new paradigm of disability. In doing so, we’ll change the lives of children and adults who have disability diagnoses—and we’ll also change ourselves and our world.
Isn’t it time to make this change?
If not now, when? If not you, who?
People First Language is right.
Just do it—NOW!"
I'm the parent of a 7 year old girl with T21. I'll be as brief as possible. This is a great discussion, thank you for caring, first, and second, allowing it to happen.
I've realized that how people react to the news has a lot more to do with them than the condition - usually ignorance. I know I was. Our Pediatrician, a wonderful woman, geve us the facts, and even brought a local expert in. His statement, "She will be more like you than she's not" has been the most accurate statement given to me, yet.
How you present the situation has to be different; all people are different. All T21 people are different, too. My daughter has no heart problems; she is also pretty low on the intelligence spectrum. I love her dearly, and she has brings a perspective and humanity to this society that needs to be closely examined before it is discarded.
That's as brief as I can be. You have chosen a profession that is not easy at all, My hope is that your perspective isn't hardened, ever, toward those that you serve.
Neonatal doc, your responsibility is to deliver the diagnosis, not to predict the child's future. Your area of expertise is babies in the NICU, so you are not the most qualified to address the future of an individual with Down syndrome.
Parents will encounter many specialists, therapists, educators, and social workers who have significant experience with Down syndrome throughout the lifespan...they have seen the true potential of our kids and know that it is not wise to put limits on what they can achieve.
It isn't as if a parent is going to leave the NICU thinking their child with Down syndrome is going to be a rocket scientist and suddenly be shocked when they don't get into MIT at 18. A few encouraging words from a neonatologist are not going to keep someone stuck in denial as life progresses.
Anyway, I believe the OB should be the one to deliver the diagnosis--they have an established relationship with the patient and can best sense how to approach it.
anon 10:52--please tell me you are not a dr. your comment does not even deserve a response it is offensive on so many levels.
Neonataldoc, one day this could be a kid you have cared for:
http://www.time.com/time/photoessays/2006/special_wedding/
oh, and no--Carrie and Sujeet do not have Mosaic Ds, but regular garden variety T21
To the non asshat that made such an astonishly rude post to Betsy, above.
You have NO idea the grace and dignity and absolute devotion that that woman has shown over the course of her child's life. To turn her very polite and non-judgemental words into...that...shows the depravity of your soul. As someone above said, here's hoping you are not a Dr. If you are, and you ever come into my child's world, you better run if you plan to spout such despicable, ignorant, and revealing comments.
Generally speaking, ND is a kind, caring person who sometimes opens cans of worms on his blog. He has not yet, to my knowledge, slunk nearly as low as you have. Given what I see as a genuine love for his patients (sometimes) I would fully expect that he would either apologize for your crudity or delete your comments altogether. Might I suggest you find a bar of soap and wash your nasty mouth out. And hey, a little church never hurt anyone, either. As I am sure you won't be attending, I will say a few prayers for you myself.
As the mother of a child with Down Syndrome I feel I have every right to say that many times my peers search for things to be offended by. You are a scientist, we are parents. You were probably wrongfully judged. My best advice to you when talking to new parents of children with Down Syndrome is tell them to take their baby home and get to know him or her before doing any research. Get to know your child for who they are first, not for what they have. Let them know that their child has Down Syndrome but Down Syndrome is not who he is. That would have made me feel a bit better but my neonatal docs were excellent, probably much like you. Very genuine and straight to the point. Please consider my advice, I'm just speaking from experience. I have the "high-functioning" child with DS. Perhaps this is the reason for all of my optimism, but Down Syndrome has not been nearly as scary or bad as I initially thought it would be. I just love my son.
A small sample of articles about adults with Ds attending college:
http://www.npr.org/templates/story/story.php?storyId=4962487
http://www.brookespublishing.com/store/books/pueschel-8116/index.htm
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12962534&dopt=Abstract
http://www.ndss.org/content.cfm?fuseaction=NwsEvt.Article&article=1575
http://www.mothers35plus.co.uk/cath.htm
http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/oriana.html
http://www.nacd.org/more_information/testimonials/down_bill.html
http://www.karengaffneyfoundation.com/articles/staysinswim.shtml
http://www.theolympian.com/apps/pbcs.dll/article?AID=/20060731/LIVING/607310346/1035/ENT05
Kelley,
"Perhaps this is the reason for all of my optimism, but Down Syndrome has not been nearly as scary or bad as I initially thought it would be. I just love my son."
Beautifully said. Thank you.
I am sold. I am sure if Einstein were karyotyped, he would probably be Trisomy 21. We already have a Down syndrome President....look how well he has done! I am sure all mothers dream that their first born will have DS.
All you guys are full of such BS. All these stories of these kids going to 'college'.....have you seen the standard of education for these kids??!!!... an anencephalic kid could go to college.
How many of these kids are at Harvard or Stanford????
I have truly appreciated your desire to discuss breaking the news to parents of having a child with down syndrome. As a parent of a child with Down Syndrome, I have thought about this a lot. I had sort of a bad experience when the news was broken to me, so I really am thankful that you have brought this up.
I think probably the hardest part is that we are a society who believe that superior intelligence is one of the most important things. We have invented and created so many things because of intelligence and have moved forward in that regard as a society. What would we be like today if we valued both intelligence and also other parts of the human beings beauty, regardless of their intelligence or physical difference? It is a deep, deep question. I think that it would be lovely if we all just appreciated people for who they are not their IQ score, or what they have achieved in life. But unfortunately that is not the world that we live in.
With that said and back to the original issue and away from my Utopia :), I think most parents of course react with sadness about hearing the news because they don't know what it all means. They know about lower IQ scores, but don't know people with Down Syndrome. They know that babies with Down Syndrome are usually terminated which shows them that have a child that is typically not wanted by most of the world. They most likely just know what they have read in books or in the literature when they were considering amnio. They don't really know anyone with down syndrome. They think about what an ugly place the world can be for a child who is different than the rest. They don't know the future for their child which is of course ironic, because none of us ever really do.
When the news was delivered to us, my husband and I we had no idea. She just looked like a cute little baby to us. It was delivered in hushed tones as though someone had died. There were some bright notes...some of the doctors had nice stories for us, not just those of what you think of as achievement, but about nice people who also happen to have down syndrome. How they are loved and cherished by their families. Others brought us sweet ideas, and that one was that children choose their parents. And I have to say that was a lovely thought and still is. I thought I would be a horrible parent to a child with down syndrome, but I really am quite good at it. After having a child with down syndrome, I was not afraid to have another. She is lovely. Other's brought us factual information, that was overshadowed by the negative tone.
So I guess my advise would be to start out positive and congratulate them on their beautiful, wonderful baby. Let them know that you believe or know that their child does have down syndrome and that may be shocking to them just because they don't know a lot or have heard things that may or may not be true. For them to know that people with down syndrome are just human beings like the rest of us. That like the rest of us, they are as different from each other as we all are from each other. That with the advances in medical science, education and parental love and support, that people with down syndrome are thriving. That they have abilities that are all over the book like the rest of us. That there truly are some people with down syndrome who attend college, and there are some that really struggle and never become literate and that most people with down syndrome are in the middle. That probably one of the scariest things for them right now is not knowing "how their child will turn out". But that we all don't know. That their families love them and wouldn't live without them. Additionally discuss any medical issues that may be occuring right now. Most importantly get them connected with true information and even more importantly with families of children with down syndrome. Really press that on them. They may think they are not ready, but I think all hospitals should have volunteers that have children or relatives with down syndrome as those people make it all real.
Don't know if my ramblings helped, but they are heartfelt.
I'm surprised at your use of the phrase "Down Syndrome patients" when talking about anecdotes of people who aren't ill but I'll assume that's a doctor thing rather than an attitude thing. :)
Can I really put the cat amongst the pigeons by saying...
I do not like People First language. It in itself implies that my various diagnoses (and there are plenty) are a negative thing and that the real Becca must be distinguished from them. This is not true. They are a part of me, fundamental to who I am. People in my political circuit (in the disability rights grassroots movement in the UK) use words like cripple and gimp and spacker to describe themselves because the skittering horror of people trying to ignore the elephant in the living room is very annoying and potentially harmful. Yes, I am different from you who stand and walk or sit and write with ease, and if that's a problem then it's not my problem, thankyou very much. I am a Disabled person (capital D if you're being political about it). Would you really say 'person who is black'? Didn't think so. If the label is worthy of being mentioned at all then it might as well go first. I don't mind; it's part of me.
To the poster who wrote..."I am sold. I am sure if Einstein were karyotyped, he would probably be Trisomy 21. We already have a Down syndrome President....look how well he has done! I am sure all mothers dream that their first born will have DS.
All you guys are full of such BS. All these stories of these kids going to 'college'.....have you seen the standard of education for these kids??!!!... an anencephalic kid could go to college.
How many of these kids are at Harvard or Stanford????"
You really need to brush up on your writing skills. The sentence, "we already have a Down Syndrome president" is like using the term, we have a cancer president or an influenza president. Your sentence doesn't make any sense.
Secondly, does it matter that these people are going to community colleges or special programs rather than Harvard or Stanford? I think most of the population in the US doesn't go to any college. So I don't see your point.
Finally, to use the term Anencephalic as you did, was cruel and inappropriate.
Your post has me wondering why I you are so angry about people who have special needs or who are different or for that matter didn't graduate from Harvard or Stanford? Let people be proud of their children.
I suggest therapy for you.
To "anonymous" who addressed me.
Yes, I'm quite aware of mosaic Down syndrome, thank you.
You take the fun out of debating with you when you prove my point all by yourself...a normal karaotype does not a genius make.
Betsy
Anon. 5:36-
Sorry, didn't realize that success in life depended on going to Stanford or Harvard. It was $40,000 a year well spent by my parents then so my brother could be a ski instructor for the past 5 years. I guess instead of giving people with T21 the support they need to live and work as independently as possible we should go back to the good ole days and throw them all in institutions.
A dr. who gets it--from
Keeping Kids Healthy at Montefiore Children's Hospital.
http://www.montekids.org/kkh/episodes/downsyndrome/
"What happens to a family when a child is born with Down Syndrome? Parents scramble to learn as much as they can about the condition and the impact it will have on their child – at first, the feeling is everyone's life will be forever changed. And in truth, their lives are forever changed – they will learn over time what experienced parents and doctors know: that a child with Down Syndrome will grow into a loving, contributing member of the family.
Expectations for academic achievement, independent living, career, friendships and success in life cannot and should not be predetermined.
People with Down Syndrome go on to college, learn to drive, even get married – there is a huge range of functionality.
Advice for parents – reach out to other parents, support groups, advocacy groups.
There are tremendous resources for your family and your child; most of them are free."
Betsy
Cant really understand your post....but then that is expected...as I said earlier....you need to get KARYOTYPED...and not karaotyped as you said. Where did you graduate from? DeVry University??!!!
I would like to remind people like the anon who has again chosen to be ignorant...that we are discussing children here. People love their children. They want to hope for them. Having hope for them allows them to forsee a brighter future, and to keep moving forward. I choose to believe in my child, not in the abilities or anecdotes of a past that restrained, instituionalized, and abused kids like her..
To the lady who says people first language doesnt matter to her, as a disabled person...let me say this. In the DS community, where words like retard and mongoloid are still right there on the tips of tongues, it matters. You choose for you what works, and we will choose the same for us. I am raising my children to respect others, and heaven help them the day I hear them use such terminology.
In any event, ND, I made this for you. I hope the point I am trying to make gets through. I love my child. Your patients love their children. There is NO way to predict the future. Please allow them to hope.
http://www.onetruemedia.com/shared?p=11b4deb8ca9a81706581fc&skin_id=0&utm_source=otm&utm_medium=text_url
OK anon 10:06, we bow down before your superior typing ability. And thank you for proving so well that IQ does not equal decency. Maybe we'll get lucky and they'll develop a prenatal test to detect arrogant jacka$$es.
I have two comments to add:
1. I will allow no one to place limitations on my son. As a result, he is forcing many people and professionals to adjust their expectations of individuals with DS. I pray that this expectation and attitude adjustment will only continue.
2. In regards to Anonymous 10:52: If you are indeed a doctor, I pray that you are holed up in a lab hidden away from the general public. Thank you for demonstrating that IQ and wisdom are not synonymous. I pray that you are able to shed some of the arrogance and learn something from us mere mortals.
Thanks for the comments. I appreciate the supportive ones, and I learn something reading all the ones from parents of kids with Down syndrome. We can't, of course, categorize you all into one group. Different people want different things.
I agree, the abortion/termination of pregnancies with kids with trisomy 21 is indeed an elephant sitting in the room. But I'm not going to touch it here.
"Sure there are some exceptions, but when I counsel parents I have to do so on the basis of facts and studies, not on the basis of anecdotes about exceptions."
I would ask you why you "have to do so on the basis of studies." While you tell parents all these stastics, I bet many of their heads are spinning. Think about the people, not the numbers.
This is what the NICHD says, "The doctor making the initial diagnosis of Down syndrome has no way of knowing the intellectual or physical capabilities this child, or any other child, may have. Children and adults with Down syndrome have a wide range of abilities. A person with Down syndrome may be very healthy or they may present unusual and demanding medical and social problems at virtually every stage of life. However, every person with Down syndrome is a unique individual..."
I know that you want to tell parents the facts. I agree that it is important to be honest. But remember that the *fact* is you do not know what the child's capabilities will be.
It's people like you that give doctors a bad name. Who are you to tell a parent that there isn't any hope? My son has Trisomy 21 and is the joy of my life. Of course everyone wants their child to have the best start in life, but does that mean b/c someone has the diagnosis that they have no hope? HOPE is all we have in this world and I thank God everyday because of it! Society tells us that everything and everyone must be perfect and THAT is what is wrong with the world today. What is your definition of Achievement??!Your blog makes me sick. You aren't God and you have NO idea what potential any human being has. My son exceeds my expectations everyday. Maybe you should think of another profession and keep your opinions that aren't based on fact to yourself.
I am surprised someone hasn't already slapped the @^&!@^%! out of you. YOU are ignorant and sound like you have a sad existance in life. Take a look in the mirror and evaluate yourself.
Neonatal Doc,
You are completely "on the mark". Down syndrome (like all of the other chromosomal issues --trisomies, deletions, translocations, mosaicisms, etc.) are not the outcomes for which most expectant parents hope and pray. It isn't and never will be something that is addressed as "Your CVS/amnio results are in and I have GREAT news for you. Your baby has Down syndrome and the one thing you can count on is that s/he will be mentally retarded". How unrealistic is that? TOTALLY.
Certainly, good "bedside manner" is a big plus when it comes to breaking the bad news (at which some doctors are better than others); yet, at the same time, there's only so much 'candy-coating' that one can do with the diagnosis of Down - especially when it's their job and legal position to provide factual medical data and NOT the "what if's" and "maybe's". The real-life stuff is up to the parents -- therapies, surgeries, nutritional supplements ....and even "snake oil" types of treatments that are utilized - usually with no documented success. What remains a constant (year after year, decade after decade) is the reality of T21. Short of gene therapy (which will hopefully happen someday), there isn't a "cure" for this syndrome (and many others). Certainly, the children with T21 who are born into this world deserve respect and opportunity. The problem is with some (I did say SOME, not all) of the parents....SOME of them push their agenda, try to force everyone to see things their way, and attempt to propegate false hopes for probably upward of 95%+ of others whose children are living with T21. MOST of them will NOT be the "exception" (like Chris Burke or Carrie & Sujeet), but will be the "rule" (like majority of these kids who have the "vanilla-flavor" of T21). They probably won't be independent, or get married, or drive cars, or have children of their own, or complete college, etc...and that's okay! They can aspire high and go as far as their mental and physical capabilities/genetic programming will allow (just like any of us)...but, realistically, the "ceiling" is a bit lower because of their diagnosis. It's not cruel to state these things, as THEY ARE THE FACTS! No doubt, it's tough for these parents to accept; but, being in denial isn't the answer (nor is it appropriate to lash out at others who don't see Down as such a "blessing"). As you stated... "I can't act like everything is hunky dory, as some commenters seem to want." EXACTLY! These are the the people (the "commenters") to whom I made reference. There are many parents of children with T21 and other mental/developmental problems who are realistic and don't demand that others see things from their viewpoint only...and then there are the "others"/"commenters", however, who do (as you know far too well).
Like the majority here, I appreciate your candor and accurate information. The ones who get "spun up" over the facts obviously have way too much time on their hands. Perhaps they should channel some of that 'energy' into spending more time with their special-needs kids rather than burying their heads in the sand and being rude.
Just as people who have fought against racial or religious discrimination, parents of children with special needs are not doing it because they have "too much time on their hands."
How rude of you to insinuate that anyone who advocates for their child isn't spending quality time with them.
Honestly.
Anonymous 2:37 was very well spoken. Either we love and accept our kids for who and what they are or we are in denial. I have high hopes for my son's future but I'm not going to love him any less if he doesn't make it where I think he will. Nor will I stop pushing him. I think my son is a blessing....not the Down Syndrome---and in the same breath I will say that I wouldn't change him if I could. I completely accept him for who he is. I agree we have to advocate for our children because there is a TON of ignorance and bigotry out there----IT'S NOT IN THIS BLOG. I truly believe that my peers who are so offended by this blog may still be in a bit of denial. Take it or leave it but leave this guy alone. He is genuinely concerned about his patients and he gave us the opportunity to give him our insight. I'll bet he'll never do that again....not with this community. I believe you hateful commenters are doing our children a disservice. Spend your anger in areas where it is needed. And as for the anonymous loser (is he a doctor) with the chip on your shoulder---- did your dad ignore you as a child? Grow up.
I do have a child with Ds, and I can honestly say that the biggest obstacle she has to overcome is every one else's ideas or "knowledge" of what she can and can not accomplish.
To be completely honest I really don't care what she is able to do, I know that the ceiling IS lower for her because of the T21. But honestly it just doesn't define who she is or what type of person she is. She is who she is, and that's okay with me.....
I may have a chip on my shoulder, and why not???? My life is much more worthwhile and productive than any of yours. There are children in Africa dying of diarrhea and malaria and you nincompoops spend precious tax dollars rehabilitating these kind of patients. Have you guys heard of Darwin....it is natural selection. Nature did not intend for these people to survive.
We would choose to abort if we realized that the prenatal screen showed a DS baby.
I am not about to spend my life like you losers convincing myself that I got a good deal.
Its another matter if a normal person becomes disabled because of some accident, but choosing to bring these patients into the world is stupid.
To all the people in denial and all the people breeding DS geniuses, hats off to you. Maybe someday I will lose my sanity and start thinking like you guys, but fortunately my superior intelligence and ability to think rationally is keeping me from thinking primitively like some of you.
Most of you will never know what it takes to be a physician. So much depends on you. I have a thriving practice and my patients always come back to me because they know I am the best and I will not shroud the truth with sugarcoated BS.
Signing off....
This cracks me up. I am now officially a hijacker. Doctor chip... you keep telling yourself our lives suck and maybe...just maybe one day it'll make your spectacular life more worthwhile. And it has been my experience that, in any profession (and even in my miserable existence I have friends, family, etc. who are doctors) if one has to brag about being "the best" ----they're usually not ;) And we don't care what it takes to be a physician. We didn't choose to be one. That's why we pay for our health insurance that pays you guys. You work for us, you dingaling. I've never used tax dollars for a damn thing. Yep, I have private therapy---not state or goverment provided.
Hi there, Doc...
Here I am, another parent of a child with Down Syndrome, who just happened to be born in the Midwest, at a Baby Factory.Perhaps you work there?:)
Listen up. I apologize for my peers. Almost makes me embarassed to know some of them. As a doctor, you guys (sorry for the stereotype) tend to look at things from a Scientific POV. Lose the science, gain the heart, and therein you find your answers on how to tell parents their child has something genetically wrong with them.
Understand that when parents are given this diagnosis, some take it in stride, while others do not. I call this the "mask."
Everyone wants to be someone, yet they don't know what to be. So they play the advocate game, looking for their sense of worth in this sometimes cruel world. It is those who are offended by your posts who are in denial. The ones who make this world too politically correct. It gives them worth, until eventually they come off of their cloud. For whatever reasons they are on that cloud is beyond me... I think it's part of the grief process gone distorted... As far as no hope, of course I can disagree. I disagree because there is a spark of hope left in me that has nothing to do with my child, it has to do with life being a complicated mess- and I see the honor in that. Like I said, lose the science when you deal with people- Get back to earth, science will only take you so far, before humanity starts kicking in. No, a child with DS will never be normal, but they can do as well as we push them to do. If you don't housebreak a dog, they're gonna' crap on your floor. If you give a kid a toy, they'll play. Give a doctor a miracle, he'll believe.
Sometimes, the most complicated things have the most simplest meanings.
I have decided that the annonymous doctor with the poison pen has got to be a joker. No one could be so without a heart, and I suspect he's having a great laugh at all the fuss he's causing. To him I ask, how is it that YOU have so much free time, what with all your devoted patients and your thriving practice and all?
To neonatal doc, I read your whole blog over these past few days. I wonder if everyone else has...you do seem to be one of the good guys. Thank you for even asking us parents how we'd like to be treated, and as you surmised, we are all very different.
But I would point out one common thread...we all love our kids ferociously. Six years, sixteen, twenty-six, they all feel like gifts to us, which is something you just might not be able to understand until you've lived it.
To the anon. dr., thank you so much for enlightening us mere mortals with your brilliant intellect. I bet you would get along well with Peter Singer.
As to some of the comments about parents being in denial...I fail to see how not accepting the limits put on my child equals me being in denial. I will not accept it when a teacher tells me that my three year old is not capable of being included in typical kindergarten two years from now, despite solid evidence that inclusion is in the best interest of all children. If my son ends up bagging groceries, and is happy doing it, I will be thrilled for him. But believing that he just may be capable of more does not mean that I don't accept his diagnosis.
Doc,
I know this discussion has gotten ugly and deteriorated into senseless arguments and namecalling, but I'd like to return to your original issue: how do you tell parents their child has Down syndrome?
Like all good doctors, I'm sure you know that medicine is both a science and an art -- even a humanity. Begin by being honest, but not providing "bad news." Perhaps just say "I have the results of your tests, and it appears that your child has Trisomy 21. Are you aware of what that means?..... In everyday terms, T21 is called Down syndrome. PAUSE.... look for the reaction. WAIT for questions. And, then answer honestly, but not fatalistically.
For instance, "Does this mean my child will be retarded? Rather than saying "yes. your child will be retarded." Say, "the majority of children do have cognitive disabilities." Notice I didn't say "Yes, the majority...." "mental retardation" has a horrid connotation and equally accurate but less connotatively frightening is "cognitive disability."
"Will my child have health problems?" You: many children with T21 are entirely healthy. In fact, the CDC reports a life expectancy of 55. Approximately half do have heart issues -- but they are operable and generally children with T21 do quite well after surgery.
ETC... I'm happy to detail answers to all of the question if you'd really like.
And, it's okay to be honest at the end and say, "I know this isn't the news you have hoped for and right now you must be shocked (devastated, whatever you think they are feeling!). I'd like to offer you the names and numbers of the National Down Syndrome Congress and local support groups so you can find out more about what life is like for a child and adult with an extra chromosome. You might be surprised that life for many is quite fulfilling."
Anyway, I hope I am adding productively to this conversation. True, T21 isn't what most people dream of when they decide to have children, but being a parent is about dealing with the unexpected every single day ;-).
Is there any easy way of comparing this generation's mortality/morbidity statistics for, say, the first 20 years comparing to those previously?
I think that that average life expectancy might be rising and I am wondering if it might be possible to project that out of vastly lower neonatal death rates etc for babies with down's syndrome.
Is it possible to deduce that with an average IQ for people with T21 being in the region of 50, the actual IQ range must be from something like 0-100? I know there are some people who have very VERY profound intellectual disability and Down's syndrome - worked on a project at a conference with a few - what is the documented upper limit? To my knowledge it's 85 but that was a child many years ago who had been denied access to any education until his mother insisted on his being tested... any bets there?
I’m very sorry, I have the results of the genetic tests and they have confirmed our suspicions that your foetus is what we call… Normal. Some people prefer the terms “Ordinarily Challenged” or “Normal Syndrome”. The syndrome can be easily identified by a complete lack of any interesting genetic characteristics. I know this will come as a shock to you, but you should be aware of what this is likely to mean.
If your foetus manages to survive the rest of the pregnancy and the birth, which is becoming more common these days, he or she will face some daunting challenges. Children who suffer from normalcy are prone to health and psychological problems. It is almost certain that the growing child will suffer a seemingly endless stream of viruses. They will frequently damage themselves, and sometimes others, from their excessive energy.
Their relentless demands will put a strain on your existing family and, of course, your relationship with your partner will suffer, and possibly end in a painful and acrimonious separation. Any children you already have, even if they also suffer from normalcy, will be jealous of the newcomer and all their extra attention. Many siblings are liable to be psychologically scarred by the new arrival.
I need hardly mention the financial consequences, although disastrous, they will be nothing compared to the emotional turmoil your life will suffer.
After a while, you may be lucky and find they can be kind and loving young children. They may find some temporary happiness in things such as music, dancing, food or playing with toys.
But if they survive early childhood, a Normal child is almost certain to grow into a Normal adolescent. Your years of sacrifice will be thrown back in your face as they become disobedient, wild and reckless. Unable to find happiness and contentment, they will treat you with contempt until they manage to leave home. Even then the suffering will continue as they will often return to try and extract money. They will blame you for their own faults and leave you bitter and twisted.
They may well become criminals, over a quarter of Normals will have trouble with the law, many will spend time in jail. Many will have problems with alcohol or drug abuse. Normal marriages are often unhappy and short and over half end in divorce.
Even if they become successful this is likely to be because of the often observed tendency of Normals towards excessive greed. The chances of them sharing their success with you are remote and they will tend to see you as an embarrasment.
Finally, Normal people are likely to die before their time. 23% will die of cancer, 33% of heart disease. Hundreds every year in this country alone are so distressed by their condition that they take their own life. I’m sorry to say that many will have had a lonely, painful and pointless existence.
I am afraid that Normal Syndrome is a genetic condition that affects every cell of the body, and so is impossible to cure.
Termination is an option.
Shall I book an appointment?
Well at least there are some rewards with the 'normal syndrome'. The child may grow up to contribute productively to society. Of course, he/she can always become like some of the imbeciles posting here (like kelley, becca, betsy, michelle .... sorry if I forgot any idiots).
Cannot say the same about tax dollar sucking DS patients. They will be detriment everytime.
More than 90 percent of children whose Down Syndrome is detected in utero are aborted. With recent advances, we should be able to detect DS in utero sooner than ever, enabling more and more parents to abort.
To anonymous 8:44 a.m....
"Termination is an option. Shall I book an appointment?" How tongue-in-cheek that copy/paste was. We've all seen it before (and rolled our eyes each and every time).
Listen...for the sake of my CHILD more than anything else, I would truly wish for "normal". I won't get into a debate about terminating a pregnancy due to Down syndrome or other problems, but I will say that it is a very legal, valid, and loving choice for parents who do NOT see chromosomal abnormalities and mental retardation as so-called "enhancements". CVS and amnio allow women a window into the womb, and that's a good thing. Although there are no guarantees in life ("normal" or otherwise), there are some 'givens' when it comes to chromosomes and when they arrive in triplicate. How anyone would ever wish for that for their own child is unimaginable (unless they had some sort of Munchausen-by-Proxy syndrome and enjoyed the attention that their child's disablity/medical problems allowed. HOW SAD!).
If the full truth be told, it's highly likely that you (and most parents who didn't know that their child had T21 prior to birth) would want your child to have 46 chromsomes and wish for "normal" mentation, too...not to mention sparing them from the surgeries and therapies and the other not-so-fun things that are often a part of this trisomy. It's probably just too non-PC for these parents to admit that it's not as much fun as certain others would try to portray. Honestly, I can understand that. I would never fault anyone for that and for being the biggest advocate for their children. They deserve that just as much as "normal" children. However, on the flip side, the same understanding and respect has to be shown to those who hold the opposite viewpoint....and nobody should fault others for opting to spare their unborn child a lifetime - however short or long - of "living with" T21.
You did forget the biggest imbecile of all in this thread -- yourself.
I thank you for that, as I would never want to be categorized into any group you belonged to.
Talk of a pathetic life - you claim to be someone of importance, yet you are delighting in spending an inordinate amount of time trying to bait us into a intellectual war with, quite frankly, a person who presents himself/herself as an unarmed participant.
And, oooh...you've thrown the elephant out at us. Prenatal testing, cost effectiveness, and abortion.
At the very least be creative and thought provoking. We've all heard your stupid spiel before.
My apologies to neonatal doctor for this silly fodder with this poster. Perhaps if s/he would grow a backbone, instead of a prehensile tail, s/he would post under an actual name and direct us to his or her own blog.
I'm sure that's a read, lol.
Well Betsy my friend, I have to come down to the level of cretins like yourself, hence the spiel about prenatal testing and the rest. Parasites like you have gotten so used to sucking the tax dollars dry, that you almost have a sense of entitlement.
I have a few days off and I happened to chance upon this blog. But how pathetic are you and the rest of your fatuous gang. You post your inane views here day in and day out. One should inform you employers (that is if any of you are employed....you probably suck more tax dollars by claiming welfare) of your 'extra-curricular activities'.
I will soon go back to my job with the high 6 figure salary and my 200K car, while guys go on with your deplorable little lives.
And you are right, you cannot be categorized with me...you are so far below on the intellectual, financial and social level, that it would take you generations to reach a point where I would employ you as my maid.
I happen to know that the anonymous guy is not a real doctor. He's puposely posting venom to create the situation we see now.
Thank-you. Its quite obvious this idiot is just that...a flaming idiot. I'm not offended by him.
Its actually quite fun to picture him furiously trying to thumb through his Word-A-Day calendar to come up with a complete sentence that makes any sense.
lay it on. Totally agree. my wife is a pediatrician and I'm confdent she'd handle things in same fashion.
To Anonymous: If you're so secure in your superiority and knowledge, I wonder--why the decision to not use your real name? I'm sure more than a few of your patients would be interested in knowing more about their physician's opinions on certain matters such as these.
Ohhhhhhh looks like I have touched a raw nerve. What a bunch of losers! Oh and Betsy, I am sorry, you could not understand some of the words which are a part of the normal vocabulary of educated people.
Lets start here A for apple, B for Betsy/Bi*tch. Try to master these in the next few months. Then we will move on.
Clearly, you have lost your fingertip grip on reality and have descended into an abyss of irreversible lunacy. You wouldn't know Up from Down (pun intended) if you had three guesses. How true is Stanislaw J. Lec's famous remark: "Every now and then you meet someone whose ignorance is encyclopedic."
Calling you dull is a gross underestimation of just how tedious you are. You have the personality of a damp sponge and the appeal of a moldy sweat sock. Any friend of yours is a lousy judge of character. Seriously, I've come across decomposing dog carcases that are less offensive to the senses than you are. Maybe you wouldn't come across as such a jellyfish-sucking mental midget if didn't lack even the dim flicker of sentience needed to qualify as a imbecile; if your weren't so fat from all that cheap beer you spend your Welfare payments on that your belly jiggle is the first ever perpetual motion machine, or if you didn't have a face that makes people ask: "Damn, is it Halloween already?" Nah, of course you would.
In conclusion, why don't you go away and play Russian roulette with all chambers fully-loaded?
$200,000 car = small penis
lol-sometimes its just too easy.
You're flaming 101 skills need so much work.
Let's see, you've covered the basics.
Called me fat - check
Corrected my spelling - check
Called me uneducated - check
Called me a welfare mom - check
Called me ugly - check
Reassured me that you are smarter, younger, wealthier, more successful, more worthy and more entertaining than I am - check
Just because I know you've hit "refresh" 750 times to see if you've gotten a reaction from your inanely boring run-on sentence, I'll offer you up another morsel for you to drivel on about.
I'm blonde!!! You forgot that one!
And what the heck - I'm feeling terribly generous today, I'll give you a freebie...
I also don't live in the United States!!
Whatcha got?
After reading SOME of the comments on what STARTED as a very thought-provoking and interesting topic by a medical doc who seems to know his "stuff".....I have a renewed appreciation for a woman's right to choose! Geez!
For those who remain respectful of others' viewpoints, thank you. For the OTHERS who hijack any blog they can find via Google and then turn everything into a "me, Me, ME"-fest....GET A GRIP and get over yourselves. This isn't about YOU or YOUR CHILD in particular. It's about the reality that is T21. Thankfully, the commenters who go nuts and post links to their montage creations or blogs aren't a true representation of MOST parents of a child with T21 or other disabilities. MOST parents are loving advocates for their children, but would never stoop to the childish antics that show up on SO many boards, blogs, etc. As much as said commenters would like to pretend T21 isn't a genetic abnormality with resultant mental disablity, it is what it is....and isn't it "funny" how these same people who don't want to accept it as a DISABILITY are the same people who are very quick to sign up for and accept any and all Government-provided assistance for the DISABLED (i.e. Birth-to-Three, IEP, Katie Beckett Program, etc.). Either these certain individuals are being unrealistic or unethical....or BOTH.
Neonatal Doc - I'm sorry your blog was tainted with the likes of certain zealots. Back to the original matter at hand ....I think you're right to approach the parents with the facts in as objective-yet-caring way as possible. Of course, there are many unknowns with ANY child (typical or not)...but, when a definite diganosis is known in the case of Down syndrome, then you HAVE to share what is factual. To do otherwise would be nothing short of dishonest, unethical, and a disservice to your patients.
I, for one, appreciate Neonatal Doc and that he at least shows an interest in the best way to break the news to parents. It's crappy news to get and it doesn't really help to sugar coat it. We all know when we hear "Your child has Down syndrome" that it means mental retardation. When we asked our doctors if they could tell us how severe the MR would be they simply said that they didn't know and that we would have to wait and see. That was perfect for me. I didn't want a fortune teller and I didn't want stories about either end of the spectrum. What I wanted was to be told what I could do to help my son reach his potential, whatever that ended up being.
I think a good way to do it would be..
1. Congratulate them
2. Give the diagnosis and show them any markers or signs or tests that confirm it. Go over any health concerns.
3. Answer any of their questions, even if they ask the same ones over and over (it takes a while for things to sink in after getting news like that) but don't try to predict the childs future one way or the other. Tell them that there is a wide range and that time will tell.
4. Send them a social worker who can set them up with Early Intervention before they leave the hospital and give them information about local support groups.
My dreams for my son is that he'll be at least semi independent, that he'll hold down a job that he enjoys, that he'll have a social life and that he'll be happy. If he goes on to college or gets married then that's great, but I'm not counting on it. If he ends up needing to live with us for the rest of our lives then that's okay too. There is so much more to life than an IQ score or how much money you make.
I happen to now know that we've got the same person pulling a Debbie Frisch on this blog. The "physician" and some of the other "like-minded" comments are the same person. Maybe we've actually been lucky enough to witness Dr. Debbie Frisch (not MD type doctor mind you) in action? Or are you just one of her admirers?
Hey "Dr. Chip" (the anonymous one who has been attacking Betsy) ... either you get around or you are unoriginal. I did a google search for "personality of a damp sponge appeal moldy sweat sock" and this was the result: http://www.google.com/search?hl=en&lr=&rls=SNYC%2CSNYC%3A2004-20%2CSNYC%3Aen&q=personality+of+a+damp+sponge+appeal+moldy+sweat+sock
Dear Neeonatal Doc, and Ladies
Hi the person who is fanning the flames, insulting everyone and saying awful things about our kids has done it before.
I noticed the wording and the hate speech ignore her and she will go away. She is a coward and a liar. She harasses parents of children with Ds so becareful of what you say about yourself. I doubt she is who she says she is.
She insults peoples grammer and the way they speak and she is no better. You will never see her name because cowards will never tell you who they are. She has been on Baby Center and other open boards and done the same.
I think it is someone who has a sorry existance and can not bear to see our adorable children and can not take the fact we are happy.
Now on to my post.
First I have no objection to hearing the pros and cons of having a child with Ds. I do resent however, when a Dr. tells you what you should or should not do as was my case. I just say make it fair and balanced.
It is true that people are not happy when they find our their child is not perfect. But it is the blessed and the strong ones who are able to overcome it. "Blessed are those who are strong in spirit they shall inherit the earth"
Some of us are rich and have money, some are middle class and some are not. Down syndrome goes beyond class, I was a financial consultant and and Assistant Vice President for 15 years, then I had my son with Ds. We do have one thing in common that makes us stronger. Our children, and the fact we were able to take what we thought was a negative and turn it into the most postive thing in our lives.
I know a lady at my son's daycare who's daughter is autistic. Poor thing is almost 4 and does not say a word. Her mother once said she almost wishes sometimes her daughter had Down syndrome then what she has; at least my son hugs and will say I love you mommy one day. The prognosis is not good she is profoundly autistic and may never speak. So yes I am blessed it could be a lot worse.
Imperfection is something that we all have in us. If we knew our child would get hit by a car and be a vegetable, or have austisum, become a drug addict or criminial or not do well in school just not be the best or just have global delays or better yet be grow up to be a person who insults other and becomes a blight on our world. Would we get rid of them before so we would avoid all of this? Would we not love them in spite of all of that?
So why should it be expected of parents of children with Down syndrome to not love their children and not keep them?There is a two year waiting list to adopt these children.
I say to all of you who have children with Down syndrome God Bless you in the journey of raising a very special child.
And to the person who has taken a post that may have been helpful and insightful to some and turned it into a shouting match. Shame on you, your non-moral existance shows how small your brain truly is, our children can run cirles around you, and the hole in your empty heart will forever be there.
So say your horrible things, send your horrible posts and emails. We have something you do not a loving, wonderful child with Ds. Too bad you will never know how truly blessed we are. So go ahead "anonymous, beezy, or any other screen name you go by and say what you will but just know we are laughing at you behind your non-moral back.
hmmmm, I don't mean to be a Lurking Police...but maybe those who are just lurking and throwing insults should just leave or stick to the origonal topic. Thanks!
LOL on the lurking police. I think I have heard that login before???
I have heard of the lurking police before..from what I hear she/he/it is a lurker, trouble maker, shit disturber and basically something to ignore...and now they are posing as a doctor with a $200K car...oh, I laugh, laugh, laugh!!! Bet they only wish...because even doctors don't drive cars of that expense..hell the insurance is a killer and who the hell wants to worry about a car like that getting stolen!!!
Oh my goodness...you really need to get a life whoever you are...pathetic is not even close to what you are all about..do you even have a life lurking police????? My guess is NO!!!!!
Of course the Lurking Police do not have a life. They are mean lonely empty person or persons who have nothing better to do with thier empty sole selves except insult people, and be little their happy lives.
I know one post said there is no happily ever after with Down syndrome and there most certainly is. The happily ever after is my son.
The is the problem with the lurking police they do not have that so there is not happily ever after for them or they would not be doing what they are doing.
Get a life lurking police... get a friggin life.
Ooh, I bet you work at St. Johns... You mentioned construction in another post... That's where I had my son, March 9, 2005. Delivered by Mike Vlastos, the coolest guy ever.... Makes me wonder if you were one of the docs to look after my son... I remember hearing a Neo talk about going to the U2 concert. Be neat if it was you.. No matter...
Lurking Police..Lurking Police..Come Out and Play...Pretty Please!!!!! Crap, you have been silent now for almost 24 hours..wtf is wrong with you...cat got your tongue?????
You are so prolific with your shit..that I really thought you would have been on by now...my goodness...you are such a disappointment!!!!!!!
Come out and play lurking police..we know who you are now...LMAO!!!!
OMG, you bunch of losers are still posting away.....you guys really dont have a life.
I had just stopped by my workplace to meet a friend, when a code blue was called. The patient with a CHI was herniating. He had the classical Cushing's triad. I ran the code and saved the patients life by intubating him and pushing some mannitol.
Now I dont expect any of you cretins to understand any of this, but this is just to make you realize what a sorry existence most of you have.
For the loser whose wife is a Pediatrician....what the shit are you doing at home while she works hard....get a life.
My new Ferrari actually cost me 237K and the insurance on it is more than what you guys' car payments. But then, I also make 750K a year.
Oh get over it....maybe you guys will have a more worthwhile existence the next time around.....it pays to believe in life after death!
Are you trying to blind us with bullshit Lurking Police or whoever you really pretend you are being. We know already that you are not a doctor (thank god) and you are really making us all laugh now with your rhetoric and antics...do you honestly think that by throwing a bunch of big words out there on this blog that we would all be so impressed with you..that we would be impressed with the cost of your car...what a fucking loser you are...we could care less!!!!!
Here is a quote from you:
I had just stopped by my workplace...omg..I am laughing so hard right now..any doctor who drives around in his supposed $237K or whatever car and calls his OFFICE his WORKPLACE..is obviously a loser or not a doctor...you are the latter!!!!
You worthless parasite, I can see smoke coming out from you jealous little ass when you say things like ' I am laughing so hard right now'.
You hold on to every little thing I say and try to refute it....how does it make a shit of a difference? I am what I am. I do RSIs and save lives, while you frikking pimp live off the taxes I pay. I dont have to use 'big' words to 'impress' you. Words which sound big to you are routine for me....maybe you should have concentrated on academics instead of smoking pot when the time was right!
Oh and BTW, just like the whorehouse is your workplace, the hospital is mine. Medicine is profession too...superior to anything else, but a profession nonetheless. So I will say it again you jackass, get a life!!!!!
Narcissistic Personality Disorder?
Are self-centered and boastful
Seek constant attention and admiration
Consider themselves better than others
Exaggerate their talents and achievements
Believe that they are entitled to special treatment
Are easily hurt but may not show it
Set unrealistic goals
May take advantage of others to achieve their goals
Preoccupation with fantasies that focus on unlimited success, power, intelligence, beauty, or love
Belief that he or she is "special" and unique, and can only be understood by other special people
Expectation that others will automatically go along with what he or she wants
Inability to recognize or identify with the feelings, needs, and viewpoints of others
Envy of others or a belief that others are envious of him or her
Hypersensitivity to insults (real or imagined), criticism, or defeat, possibly reacting with rage, shame and humiliation
Arrogant behavior and/or attitude
Delusional disorder: People with this illness have delusions involving real-life situations that could be true, such as being followed, being conspired against or having a disease. These delusions persist for at least one month.
I just diagnosed you now does that make me a Dr? So far you have done nothing to dazzle me with your sharp wit. In fact why do you not explain what its is exactely this had. The only thing cushing I found in the medical book was Cushing's syndrome? That just so you know is a small tumor on the pituitary gland.
I am very curious as to what CHI is as well. Hmmmm don't think you Dr. A$$hole.
Dr.'s Do not drive 276K cars. So Go ahead Dr. Lurking Police. Come out come wherever you are.
Most like sitting by your computer playing with yourself because no one else with have you.
Well now is that not the pot calling the kettle black. Calling someone a whore. I am sure working your way to the top in your case "Dr. Chip" is spreading your legs for anyone that would give you a break. So tell me what is it like? How many professors did you screw to pass your classes? We know you are a women, you can say your are not all you want. Please tell me I want to get ahead like you. What your tricks. Do you stand on one head while you do it with the cheif of staff? I forgot it is lonley at the top I guess you and your best battery operated friend have gotten to know each other really well.
Ahhh don't like getting as good as you give. Bend over your are in for the ride of your life LP.
For the OTHERS who hijack any blog they can find via Google and then turn everything into a "me, Me, ME"-fest....GET A GRIP and get over yourselves. This isn't about YOU or YOUR CHILD in particular.
Now that is really something....Attack a parent...not the sorry excuse of a shitbag attacking our kids....NICE ONE!!!!
sorry...I didnt' mean to hide...I'll repost with my NAME
Anonymous said...
QUOTE: "For the OTHERS who hijack any blog they can find via Google and then turn everything into a "me, Me, ME"-fest....GET A GRIP and get over yourselves. This isn't about YOU or YOUR CHILD in particular."
Now that is really something....Attack a parent...not the sorry excuse of a shitbag attacking our kids....NICE ONE!!!!
To the anonymous scumbag....I cant believe I am digniying your sorry existence with an answer....but Cushing's triad is a well known entity; bradycardia, hypertension and irregular respirations....sign of increased intracranial pressure.
Now if any idiot like you culd find all this in a book, what did people like mw go for med school for?
I know it will take you a lifetime to understand the meaning of the few lines I have written above, but then you seem to have the time. You are obsessed with me!!!!
BTW I still stand by my original argument...better prenatal diagnostic techniques will soon enable us to abort all DS babies.
I am personally against abortion, however, if your mother had done that we would all be better off now would we not? Too bad there is not a test to predict who will become assholes in later life. Or better yet a test for Narcissistic bitches would help. You did not answer the person that asked how many times you had to sleep your way to the top. I would like to know the answer to that question.
If are a Dr. tell us who you are. And stop frequenting web md and get a life. Whoops you do not have one.
My child with Down syndrome is 1000x the person you will ever be. I guess you will go to hell with all others what to kill babies.
Oh by the way doc the word is could you spelled it wrong. So much for your education.
You I forgot I ment superior education you say you have. What is the matter baby center getting to boring for you?
You sound like one of those 'pro-life' scumbags who bring bastard children into the world everyday. I am sure you are a bastard child yourself. You and your mother were OK with having sex at 15, but will not abort!
Now I am sure you are also interested in my sexual exploits, but then you are a depraved POS. Web MD is for retards like you and your child!
Awww. What the matter Lurking Police, Zip, Beezy, Dr or whoever you are hit a raw nerve? Don't like getting it as good as you can give.
Your really should start using a thesaurus you are getting redundant. Oh yes it takes a very smart person to attack children. Wow your wit just makes me LMAO.
How is your battery operated friend to today. You are in bad mood I am sorry did I have something to with that? Or was it that your friend did not work and you have not had any today?
I'm enjoying this actually, making you mad. You see I am not angry right now I am just having a good time. I think you are not used to people calling you what you are. A baby killer yes that is it a baby killer. Did your mom (who probably spread them like you do) miss the cut off to abort you and you are here and that upsets you?
I am happy for my long marriage and wonderful kids. That is all I need. And you and anyone who wants to take me on about it go ahead. You see darling it takes a very unhappy person to attack others the way you do.
And I do not have to google my insults like you do you are pathetic. And the fact that your pathetic tells me you are sad excuse for a person.
Attacking children is not just a sign of poor moral compass it is sign of true Narcissistic Personality Disorder. You are one sick person.
Yes I choose my son, I choose life instead of death. I am proud of that, and I will stand up to that. There was a time I thought I might not be able to handle a child with a disablity but I was wrong and I consider myself blessed.
However I stand that in your case if were your mom I would have made an execption. I would rather have a loving child with Ds. Then someone like you for a daughter.
Oh well I guess I am done with you LP. I won anyway or you would not be so pissed.
I am done with you. It was interesting to say the least.
Have a great day. :)
whoever is posting this stuff, and I do mean from the DS side, you are being as cruel as she/he is. I stopped posting when things started getting personal and nasty and crude. Yes, whoever you are (I do have a pretty good idea) who thinks you hurt me by bashing me here anon, I stopped also because of you.
There was a point in this discussion, at one time. Remember? It was about why it is not fair to tell a parent there is no hope. You are feeding the trolls here, and obviously it makes everyone engaged look foolish. Neonatal Doc, I would like to think you would not want such nastiness on your blog, though it probably is fun to watch. But really, it has gone too far. On BOTH sides. It is just a slugfest now, and that is a shame. They win, you know? The ones who think our kids have no place in thsi world. If we get down on their level, they win. Some things are just too low to get to. There is plenty of hate and ill will in this world without allowing it to become what it has here. The idiot who baited you knew what they were doing. They are so transparently trying to get a response out of you, and so obviously NOT who they claim to be. You know that, anyone with half a clue knows it. Why bother?
Michelle:
I am not sure you do know who I am, I am kind of new to all of this and I do not know who you are. First I have NEVER gone down to this level before, but in this case it was warented. Not all of that was me either.
This person has gotten personal and attacked our kids on many boards before. I have basicly left them so that I do not get into the fray so to speak. In fact I tried to stay away from this one. But I decided to give as good as it is has been given to our kids today.
At first I was mad then I realized how totally insane and stupid this women is. And actually I am not sorry that I said what I said. I feel better now. There is no need for me to respond further like I said I'm done with it I made my point.
That point being, that just because you beleive in choice does not give you the right to attack others for theirs.
I attacked her for her choice of words and choices she has made (since we know who she is) as she has attacked me and others for ours, I will not stand by and have mom's called whores and other names without it going unrebutted. If sticking up for our kids and mom's if it is cruel then so be it.
Yes I was mean, cruel and nasty, but it is about time someone called this person out on it and gave it back.
Was it the right thing to do. Not sure, yet but I know that I realize she was doing it to get a rise, but I noticed that she started to get reundant and I was getting much more of a rise out of her then she was of me.
It is too bad that such a thought provking converstaion turned into this. But she choose this board because it is not moderated like others, there is no one to complain to or delete what she said that is why she picked here. I think we all know that. But to take is lying down not on your life.
I will not get into other things she has done right now. Lets us just say that if I offended you or any other mom then for that I am sorry.
Sorry to her sorry that I gave it back no way.
Hehehehe...I ve had my fun! The Anon who says he/she won the argument....maybe you have the delusional disorder. Anyways, even if I concede for a minute that you won, you still have a RETARDED child. Hehehehe....the joke is on you!
BTW, with the amount of time you spend on the internet, who takes care of the kids????...time to call 696 KIDS??? Not only are you a lousy blogger, you suck as a mother/father too!!!!
Anyways, this is getting boring now, its time to move on. Carry on LOSERS!
but see, just as I am pretty sure who you are, and not real convinceable (so not a word) that you arent that person, SHE/HE may not be who you think they are. Ok, semantics...I think you believe this is Zip. And you might be right. And God knows Zip has done nothing kind or understanding, she is cruel and amazingly brutal. But what if it isnt Zip? Just like Im might be wrong on your identity, you MIGHT be wrong on hers. True, it doesnt really matter WHO it is, whether it is Zip being cruel or someone else. But in the bigger picture, it does. Because this hate and back and forth and rottenness that has affected SO many lives will never end if we dont have some dialogue and decency. Imagine what a pregnant woman sees? We think Zip is evil, she thinks we are. And in the end, all the mom sees is this hatred and this anger, and all she has to do to get away from being a part of it is abort her baby. She likely doesnt want to be like ANY of "us" on either side. She just wants her quiet little life back. We are not doing a good thing by hating. The hating has to stop, everywhere. On all sides. In and out of the DS community.
If you are someone open to dialogue, then please feel free to contact me and lets see if we can resolve whatever differences make you so sure you are right about who I am and my motivations. If WE all cant even get along, how the heck can all of us from across the span of theology or morality get along? We never will, as long as attacks like these and tit for tat occur. And as right and vindicated as you feel saying things like "spread your legs" or "baby killer", you have to remember you are representing women the world over, and especially women whose kids have DS, and you just need to try to keep some decency and not be so crude and cruel. It will get none of us anywhere. Please remember that even those on the other side of this awful issue have feelings, and that we could have so easily been like them, we could have aborted and lost this precious gift we have been given, the same gift we are squandering away by fighting. I want to live up to the person who God entrusted me with, this child who knows NO malice or meanness. I need to go to bed at night believing I have earned the right to have such a gentle soul in my life. Im tired of fighting. Im tired of hating. Its time to build bridges instead of burning them. All I am asking is that you do not rise to the bait, learn to let the hatred stand out in the open all by itself. People WILL see it. People pay attention. No, Im not a roll over and take it kinda girl. I have stood many a time. And all it has gotten me is hurt, angry, confused. Once i learned to stop taking the bait and NOT responding, it becamse obvious to everyone looking on that this wasnt MY problem, but someone elses. hatred has a way of being illuminated, and people walk away from it. It may take awhile, and it really does suck sometimes NOT to fight back. But when people say it makes you the bigger person, they are right. I choose not to fight anymore. Let whoever it is say whatever they want, and turn the other cheek, again and again if necessary. Eventually, they are only left with their anger and hatred, and we all know that isnt much of a life. I hope this makes sense. Peace.
"Hehehehe...I ve had my fun! The Anon who says he/she won the argument....maybe you have the delusional disorder. Anyways, even if I concede for a minute that you won, you still have a RETARDED child. Hehehehe....the joke is on you!"
All you have is a grave to visit. The joke surely isn't on me.
No, the jokes not on you. How's living in mom's basement? How's that working out for you?
Still hanging out at that hounds site? It's such an upstanding site and they even allowed your Calling you dull is a gross underestimation of just how tedious you are. You have the personality of a damp sponge and the appeal of a moldy sweat sock. line.
Is that the site where you're posting as 16 year old - or is that another site where you used the Calling you dull is a gross underestimation of just how tedious you are. You have the personality of a damp sponge and the appeal of a moldy sweat sock. line.
Have fun living in the basement - watch out for spiders though. They can be nasty. Although, with your online degree in doctoring, you should fare just fine.
michelle, you have always been one to always take the high road..LOL
you fake to be someone who has terminated a ds child, and say reprehensible things, to get into a private board? that is taking the high road?
PAHLEEZE!
She did WHAT. And is lecturing me about how to behave on board!!! Holy Crap. What the hell is wrong with this picture?
You are nuts, telling me how to behave I actually felt sorry I offended you. When the whole time you knew you did such a horrible thing.
Getting into it on board is one thing. But lying to get into a private board!! That is just wrong.
Sorry I do not mean to be so judgmental of another Ds mom. I respect all of us but really.
What is that about throwing stones.
Ummm, people...there is more than one Michelle in the world who has a child with Ds--has that not occurred to anyone?????
oh yeah, I forgot. And dont forget, I send viruses to people and wreck their computers, too. Because im THAT smart. @@
Bwahahahahaha.
Turning the other cheek is entertaining, if painful.
Michelle,
What is wrong with this picture here. You are attacking Mom's of children with Ds? Telling us how to behave then I find out you did that? And let's say you did not for shits and giggles then why be so rude to another mom. You posted this long thing about being nice and not getting nasty with whoever that nut job is and turn around and attack another mom. If you are so above all of this you should have ignored it.
I could not have contacted you if I wanted to anyway I do not know who you are. Like I said I am new to all of this. And as far as the PP saying that you are not that person. You say you know who I am and sweetie I can tell you you do not. I stumbled on this while posting on another public board and decided I was not letting this one go unsaid.
I am sure you want to protect you child just like I do mine. But if we attack each other. The bitch or bastard that started this wins.
So stop lecturing everyone and so what you say you do best turn the other cheek.
And yes if that was you that did such a thing then you are a hypocrite, of the worst kind. So if that was you then please avoid the lectures on how I need to act above it all to be worthy of my chid.
Sorry for the typos but I have to get the kids. No time to check
I attacked someone? Where? Do point that out to me? See, the problem here is too many lilly livered chicken butts who wont use their NAMES. *I* use mine, and I am the biggest target out here. And Im taking it. You? You hide. You and I BOTH know you know me, and that this is personal. And that instead of going after the one attacking our KIDS, you have chosen to make a side journey and attack me. And what was it that got accomplished? Not much. Great job.
I am sure you want to protect you child just like I do mine. But if we attack each other. The bitch or bastard that started this wins.
Yep, they win. The old United we stand thing...they got us cold. Good job
Ok, there you go my name. You do not know me I do not know you. Heard of you yes know you NO. And now frankly I do not think I want to. I posted under my name here in a post a day or so ago. I stopped at the behest of DH who would have prefered I did not considering the crazy asshole fake Dr.that was on the board.
So there you go you got me. Yes, I have heard what an upstanding person you are. Heard I have never had any contact with you until now thank God. And fact is after the orginal post I thought about asking how to contact you. But now I am glad I did not, because from what I have heard you are not a nice person. It is a shame really because I am sure you started out that way. Where did it all go wrong for you.
I am guessing by getting into with the terminators and you took it too far. Maybe you regret it and that is where you were coming from before. But to tell me you are some wonderful person who turns the other cheek is just wrong.
"There is plenty of hate and ill will in this world without allowing it to become what it has here. The idiot who baited you knew what they were doing. They are so transparently trying to get a response out of you, and so obviously NOT who they claim to be. You know that, anyone with half a clue knows it. Why bother? "
Now you most likely feel the person that posted about you doing that stuff is baiting you. You took the bait right? So why bother if there is not truth to it. Why get so angry. I am guessing there is some to it now more so then before.
So do not take the bait. Do as I say not as I do? Is that the motto of the day.
"Anonymous said...
Ummm, people...there is more than one Michelle in the world who has a child with Ds--has that not occurred to anyone?????
8:11 AM"
all one has to do is click on her name, and see her blog/daughter to know it's the person who did this thing.
michelle, are you saying you didn't do this? cause i know several people who could vouch that you did.
Alright...that is ENOUGH! Come on, people - you all know that THAT is what comes with the internet - ambiguity. With the intent to hijack (much like we've all done to Neonatal Doc's Blog, "Termers" pretend to be "Lifers", "Lifers" pretend to be "Termers", 16-yr-olds pretend to be successful Drs (all the while probably getting in trouble for spending too much time playing pretend on the computer and not getting his homework done). Ann, do not buy into any of this crap. We are now officially way OT.
To Neonatal Doc - although I personally don't appreciate some of what you had said, that doesn't matter. Hopefully you are able to weed through this and find some really viable feedback to consider. However, you deserve to know the background as to what has happened to your blog. This is now an age-old fight between "Termers" (those who chose to terminate their pregnancy due to a poor prenatal diagnosis) and the "Lifers" (those who continued). These two groups will never agree. Never. This fight began on Babycenter.com until they tightened their rules and deleted inappropriate comments and threads (mostly containing personal attacks). I implore you to do the same now. This fight will never be settled and now your blog is only adding fuel to the fire.
Thanks, Jennifer. I haven't had to enable comment moderation in the past but might do so now.
Neonatal Doc:
Speaking as mom of a young baby with Ds. This is what I think. Giving people the bad and good is very important. It is also important to know your patients. If you are dealing with a parent that knew of the dx and was prepared for it. They already know all the negative, there is no need to go any further. Be honest about the physical health and what is happening to that child of course, but be aware that child was choosen by those parents to come into this world. So your approach should be very different. They have already heard it all.
Now you have the parent that it was a complete surprise. You have to tell them everything straight up, but how you do it could effect them for the rest of their lives. Do you want to be the Dr. that they remember as the one who gave them no hope or the Dr. that told them there will be obsticals and you really do not know what will happen in the long run, but they have their son here to love and he will be a loving child to them.
When I had my level two they found a very soft marker the perinatologist was very quick to mention Ds. And yell at me for not having an amnio and now I only have a week to terminate. I was never asked what I wanted, I did the amnio at her behest and the FISH came back postive for T21. Her words made me question everything. What she said is too long to go into detail but to this day I can not stand her for what she did she made it very clear she did not approve of my decision to not have prenatl testing and that it was my obligation to the child to consider termination. Now if I have another child I would not let her with in 500 feet of me or my baby. Thank God my OB was a godsend, and supported my decision to keep him and never critzied me. Him I remember as the kind Dr. who held my hand and let me cry on his shoulder. A man that I would let deliver any baby of mine I would not even consider anyone else.
So which one do you want to be. You need to decide. If you really want to know how to deliver the news in a fair and accurate manner I will tell you the Dr. you need to speak with. His name is Dr. Brian Sokoto. You can google him and read about him. He is works with Dr. Alan Croker of Boston Childrens hosptial Ds clinic.
He goes to Harvard Medical School and Harvards Kennedy school of government. He has written many papers on how to deliver the news of Ds and other PPD's to parents, pre natal and after birth.
Please contact him, now if you are really interested I ask that you do that and post your finding here about what he said and what you think of it. I feel you will find him enlightning and very interesting.
I look forward to seeing what you have learned. And please think of which Dr. you want to be. The ones parents feel they do not want to see again because of the way they perceved they were treated or the one they remember as the kind Dr. that told them the good the bad and the ugly and treated them with the kindness of 1000 men.
Like another person mentioned, look up Dr. Brian Skotko. Also check out http://www.bandofangels.com for information packets you can offer new parents.
I wish you well.
Wow! This has gotten way out of hand. There are many "anonymous" posters on here, which is understandable (considering the passive-agressive threats that certain others throw out there). For anyone to make an erroneous guess as to who is who in this setting is fool-hardy at best (and it's obviously several different posters based upon the verbiage and writing styles used).
Suffice it to say that there are those of us (many/most of us) who see T21 for what it is - a syndrome that causes mental retardation to various degrees, as well as physical issues, also to various degrees and on different timelines. That's why approximately 90% of the women who are given the prenatal diagnosis of T21 opt to terminate! They've done their homework and know the score (many of them have grown up with a sibling with this same syndrome or have worked with the mentally disabled, so they're far from blind to what this reality can be).
Yes, there are others who don't opt for prenatal testing and find out their baby's diagnosis at/after birth. These families deserve to have the facts given to them ASAP in a kind and caring way. However, kind and caring do NOT equal "candy coating" (which is Neonatal Doc's point). That's simply not reality. Granted - nobody knows what the future holds for anyone, typical or challenged. However, tried and true medical documentation (and real-life experiences) DO paint a fairly clear overall "picture" of what three #21 chromosomes will manifest in MOST human beings who are affected by this chromosomal abnormality. Facts are facts.
As always, I respect others' viewpoints - even when they're the complete opposite of those which I hold. Unfortunately, it isn't reciprocal with certain so-called "trolls". It doesn't upset me, as I consider the source and write them off as prejudiced and nasty.
Neonatal Doc - I think you're a gem. I haven't stooped to the level of many of your "commenters". This is ONLY my fourth entry on this thread/blog. I take NO accountability for the others' posts. (Mine are this one as well as anonymous 2:34, 10:18, and 2:06 - and that's it).
Keep up the good work, Neonatal Doc !
Anonymous,
You seem to be a considerate person, and one who is trying to keep this thread on track. But I take issue with two of your points: I just can't believe that "many" of the 92% of terminations due to a diagnosis of Down syndome are made by people with a first-hand knowledge of the issues associated with the condidtion. There just aren't that many people with DS for that to be true.
Second, if these people have done their homework, as you say they have, then they would know that the major issues can be resolved or managed: hearts are repaired, thyroids are tested and treated with a simple pill, issues such as hyptonia and others can all be managed with very do-able care. The increased risk of leukemia is very small, and there is a decrease in risk for things like breast cancer. The only issue that can not be altered is mental retardation, and even that is typically mild/moderate.
So we are talking about people with a likelihood of lower intelligence--and if you took all your references to DS out and substituted the phrase "people of likely lower intelligence," you would begin to see the discrimination that is at work here.
Once, women were not allowed to vote, because it was thought that we couldn't understand the issues.
Once, people of different skin color were not afforded equal rights because it was assumed (and yes even "proven" by the "scientists"mof the day)that there was a deficit for learning.
It is still with us. I have never been able to abide discrimination, in any way, shape or form, but particularly not when it involves children.
"Suffice it to say that there are those of us (many/most of us) who see T21 for what it is - a syndrome that causes mental retardation to various degrees, as well as physical issues, also to various degrees and on different timelines. That's why approximately 90% of the women who are given the prenatal diagnosis of T21 opt to terminate! They've done their homework and know the score (many of them have grown up with a sibling with this same syndrome or have worked with the mentally disabled, so they're far from blind to what this reality can be)."
I think the ones who see T21 for what it really is are the ones who live with it in their homes 24 hours a day. I'm well aware that it means mental retardation and physical problems. Afterall, I'm there for every doctors appointment, every surgery, and every therapy session. On the other hand, I'm there to see his progress, his adorable personality blooming and his undying determination. I see his potential and I don't let fear get in the way of loving my child for who he is. For you to suggest that the people who are most familiar with T21 don't see it for what it really is, frankly, is arrogant and ignorant. If we didn't see it for what it is then we wouldn't work so darn hard.
Yes, there are others who don't opt for prenatal testing and find out their baby's diagnosis at/after birth.
you are misrepresenting the facts. It is not all or nothing. Not all people who get a prenatal diagnosis terminate. Many go on to have their children, choosing to do so for MANY reason,s not just religious ones. And even more than that, MANY people refuse the prenatal testing altogether. The statistics are slanted, yes, MOST who test prenatally care enough about the genetic makeup of their child TO test. Some test because they want to be prepared, not so they can terminate. And MANY MANY people dont test at all, because they know the child already exists, and they for whatever reasons believe it is not their judgement to make.
PS Jennifer...BRAVO. You said it so well.
Ladies,
Those were the exact same points I made in my posts. There are a few different scenarios. Some opt not to test and handle whatever happens. Others test so they can be better prepared to handle whatever happens. Others test so they can interrupt the pregnacy and spare their child what a certain diagnosis would mean (big picture; not just the first few weeks,months,years). Those who opt the latter choice do so out of love...not fear or embarassment or an unrealistic quest for "perfection". Certainly, some physical problems can be corrected with medical and surgical interventions (heart and bowel issues, leukemia, seizures, joint problems, etc.). However, the biggest issue for many people is the mental retardation, and there's no operation or pill that can take that away. No, most parents don't measure the value of a child on their IQ; but, they DO realize that it's not necessarily the type of "life" that is best or most fair for their child, either. As always, it's a very SUBJECTIVE and PERSONAL matter. It is about THEIR own child and life circumstances...and NOT about anyone else's child with T21, T18, T13, spina bifida, Kleinfelters, XYY, Turner's, etc.
Certainly, your kids are here. Obviously, it's important to love them and to help them reach/maintain whatever their individual potentials may be. Like I've stated before, nobody is denying your children this (and it's actually your labor of love and obligation as parents). However, it only seems right to grant the same respect for the opposite viewopoint in return. Will that happen? Probably not, and that's okay. At least I know that I showed the respect and consideration that others always demand, but rarely return in kind.
see, try as you might, the prejudice is so ingrown as to be indistinguishable from the rest of what purports to be a kind, receptive post. To say people would "spare" their child "this life" is to perpetuate a myth. These children are not suffering. Almost every single child I have ever known with DS is happy, joyful, and has parents who feel blessed by their presence. My daughter is surely not suffering, nor are any of the kids I know and love. In our case, we have had no serious medical issues, and the ones we have had we deal with, as we would for any other child. Their lives are not defined by those medical issues, where they pertain.
Furthermore, the semantics involved in what you call "interrupting your pregnancy" are astonishing in the information they leave out. To my knowledge, a pregnancy that is "interrupted" will never resume, which is a nice way of saying it is ended. Which is a euphemism for dead, as near as I can tell. I am forever grateful that my child's life continues, uninterrupted, and that she brings me great joy, and she EXPERIENCES great joy, just by being. She is no more the sum of her symptoms than I am of mine. She is a child whose peers are being systematically hunted down and destroyed because of prejudice against those with lesser mental capabilities. It is, as Jennifer said, the last bastion of allowable prejudice in the world. I like to think the day will come when God Himself will inform us as to what His definition of "perfection" is.
Once again, your opinion is just that -- YOURS. As always, this is a situation where both 'sides' have to agree to disagree. The side that understands why parents would opt to tx and the side that won't accept that option because it is felt as a slight to their child with T21 will never see eye-to-eye on this issue. Thankfully, a woman's right to choose is still intact.
So, of course you're entitled to your opinion based upon your own reality (an entitlement we all deserve, no matter what one's particular beliefs and viewpoints may be). Unlike the approx. 90% who choose to interrupt their pregnancies, those of you who have reality of parenting a special-needs child have to rise to the occasion. You profess to find only joy in this endeavor. That's wonderful IF your joy is true/real....and your child's needs are put first. Sometimes, it appears very contrived (and many other parents of special-needs children paint a more realistic picture....good times and bad, happy and sad -- just like with "typical" children. It can't be sparkles and sunshine 24/7 with ANY child).
Whether you and others wish to accept it or not, T21 and other such abnormal genetic diagnoses are NOT conditions with which most wish their beloved children to exist . What one person considers "happy and healthy", another will see very differently.
As has been said repeatedly....your children are in your lives and you can't imagine your 'world' without them. That's understandable. Enjoy them, help them, encourage them, etc. (like any child)....but DO realize that a large majority of people aren't going to see T21 as such an 'enhancement'. Like neonatal doc stated in his other blog entry -- what is cute at 6 is less cute at 16 and even less so at 26 (and so on, and so on)...and this isn't even about "cute". It's about so much more.
Neo Natal Doc and Ladies
The problem here is that Dr's in general expect a women to terminate a dx of T21. They just act like it is all bad and that is it. My peri was very disapointed in me that I did not terminate. However, my OB was HAPPY I choose him he even gave the numbers of women he delivered babies with Ds.
How wonderful to go into those houses and see a variety of ages. I must say they were wonderful and just made my choice to keep him all the much easier.
My son's school which is a piolt school that has only Ds and typical children who's parent's pay to send their typical kids there. And they have contracted with NYC Med. and Cornell School of Med to have the med students tour the school and spend time with the kids.
Many doctors who were taught Ds was a horrible thing left with a very postive opnion of Ds.
Yes there can be problems, yes there can me mental handicaps, but tell that to the mom in my son's school who got hit by a car last year and has the function of a 1 year old and will stay that way. If she knew by some crystal ball that this would happen to him would she have term. most likely not.
Tell my husband who's brother died from T18 beleive me Ds is a pleasure compared to what my MIL went through with not just one but two.
Like I said, you have to be honest, but there is honest and there is cruel. My Peri was cruel.
I do not know what life has in store for my son. But he is a wonderful loving little boy with the world at his feet. And I have to say yes some people have made negative comments but most just think he is the most wonderful baby, as far as them being older and not being cute anymore. Bull. We have a wonderful in our church that is an alter boy and has Ds. He is polite, respectful, and quite handsome.
And just so the mom's of Ds kids on the blog know there is hope on the horizion. Ted Kennedy yes a democrate and Dr. Brian Skokto is trying to get a bill passed in congress that will REQUIRE DR's to give postive information as well as negative information, they will have to give packets out with numbers of NDSS and org. a like.
I do not know where this is but there was a big article in my local paper quite a while ago on it.
As much as I do not agree with Ted Kennedy Politics he is a friend to the mentally disabled and their parents. As you know his sister suffered from a Mental Disablity. And it is the Kennedy's/Shrivers that started special olympics.
Please call you local representative and Mr. Kennedy's office to see where this is and demand it be passed with your local representatives.
Together we can make a difference and maybe the save the life of an unborn child with Ds.
I want to add a few more things just to lift up this blog. We have a girl here with Ds that was in the Natl Honor Society and is attending college away from home and is not taking life skills classes.
We have a man down the road lives on his own is a garbage man he had to pass a civil service test to get and make 50,000.00 a year with out overtime. His mom was telling us he loves being on his own and he manages his own money.
One day over the summer I was driving and saw a group of typcial teenages hanging out coming out of the pool. To my surprise in the bunch was two boys with Ds, and their typical friends having blast.
So please do not tell me these kids suffer, the only obstical they face are bigots, and no offense but there are a few on this board.
As far as people posting as anonymous, just like people who terminate prefer to keep thier name private so they do not receive hateful emails and such some moms feel the same way.
Dont you guys have anything better to do than send petitions when there are so many more important things the government needs to focus on. Live in your little bubble where DS patients are 'joyful' and 'handsome'. But please leave the others out of this. Hopefully gene therapy will enable us to cure this disease in the near future and then we will not need to have these mindless arguments.
Here is a reference:
http://www.boston.com/yourlife/health/diseases/articles/2004/01/27/down%5fsyndrome%5fcure%5fmight%5fbe%5fwithin%5freach%5fof%5fscientists/
To quote them ' Armed with an array of new tools -- from genome mapping and stem cells to genetically engineered mice and a deepening understanding of Alzheimer's disease -- they are trying to pinpoint just how the extra chromosome of Down syndrome leads to retardation and a host of other problems. Once they figure that out, the thinking goes, perhaps they can someday help people with Down Syndrome gain some IQ points, or even develop normal intelligence'.
First of all anon if you read my post completely this was not the result of a petition. It came from Ted Kennedy himself who contacted this young man Dr. Brian. It was his idea. And nothing like a petition was ever mentioned. However, since something like this has come up we as a group of moms have every right to contact our federal government to support it.
Also your hate of our children is actually pretty sick, and it is polite hate speech. The only person living in a bubble her is you unable to see the joy in our kids.
What bothers you more dear the fact that a pro choice democrat started this or the fact he wants parents to be fully informed prior to making the ultimate choice or sacrifice. Hmmm I think it is because you want to see our children basicly exterminated.
I wonder if the anon here getting into with the parents again is the anon that started all the crap before. I think we should not respond to he/she and just keep making helpful suggestions to the doc.
I wonder if he is really reading these because if he was I would thing there would be more then one comment since all this started.
I have seen parents like you first hand...filling the voids in their empty and otherwise worthless lives by taking care of a child with special needs. You think you are doing something noble/altruistic. Who are you trying to fool by saying these kids bring 'joy' and 'happiness'? I have had parents come in and say how their lives have been completely destroyed, how they have been divorced from their spouse, how the other children in the household have been ignored because of the overwhelming needs of the handicapped patient, how they have been financially deplete and so on.
Your kids are handicapped and you love them....that no one doubts. But do not paint a rosy picture of a situation that is far from ideal. This may give false hope to parents who are thinking of terminating the pregnancy because of an adverse prenatal screening result. There are enough problems in our lives these days and we do not need a handicapped child to make the situation worse.
If you want to feel good about yourself, go to third world countries with REAL problems and volunteer to help eradicate infectious diseases.
So should we rid the world of all mental illness then? I would say that would eliminate at least half of the world population...including you.
oh goody, something I can refute easily.
The cost of choice: a price too high in the triple screen for Down syndrome.
Elkins TE, Brown D.
Department of Obstetrics and Gynecology, Louisiana State University, School of Medicine, New Orleans 70112.
PIP: At US national medical society meetings in 1992, researchers from a major university presented their data on a triple screen of maternal serum tests for the detection of trisomy 21 or fetal Down syndrome. Low maternal serum levels of estriol and alpha-fetoprotein, along with a high level of human chorionic gonadotropin can predict pregnancies at risk. The authors claimed that a person with Down syndrome costs approximately $196,000 including health, education, and residential costs. Simple economic costs about persons with Down syndrome in the cost analysis seem unbalanced. Some recent studies show no increase in divorce rates for families including persons with Down syndrome. In a 1971 review of 104 brothers and sisters of persons with Down syndrome, no specific behavioral disturbances were noted. Among complex costs triple screening threatens the integrity of the medical profession. Genetics counselors promoting nondirective informed consent, but the cost analysis description of Down syndrome are in the mild-to-moderate mental retardation range consistent with a 3rd-9th grade reading level. Less than 1% have leukemia, and less than 3% have in operable cardiac disease. Another cost that is difficult to measure includes the value placed on the maternal, paternal, and familial anxiety caused by genetic screening tests. Triple screening for Down syndrome is about societal concerns and social character. Many methods of health care rationing await the American medical system. A large number of factors must be considered before any system of limiting costs and choices is selected in a pluralistic society. Accepting the fact that limitations to choice must occur is the first step toward future rationality in genetic counseling.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=7691458&dopt=Abstract
The purpose of this study was to explore how children respond to the experience of living in a family that includes a child with Down syndrome. The guiding framework for this research was the Resiliency Model of Family Stress, Adjustment, and Adaptation (McCubbin & McCubbin, 1993). Mailed questionnaires were used to collect data from 76 families of children with Down syndrome. The results indicate that for many siblings, the experience of living in a family that includes a child with Down syndrome may be a positive, growth producing experience. As a group, siblings in this study had above average self-concepts. In addition, maternal reports typically indicated that these siblings were socially competent, with a low incidence of behavior problems. Four family variables (i.e., family vulnerability, family appraisal, family resources, and family problem-solving communication) were significantly associated with sibling well-being.
http://www.denison.edu/collaborations/dsq/vanriper.html
Journal of Intellectual Disability Research 47 (4-5): 273-284 (2003 May)
Fathers of children with Down's syndrome versus other types of intellectual disability: perceptions, stress and involvement
L. A. Ricci & R. M. Hodapp
UCLA Graduate School of Education and Information Studies, Los Angeles, California, USA
Background. The present study examined fathers' perceptions of, stress relating to and involvement with children with Down's syndrome (DS) (n = 30) versus those with other types of intellectual disability (ID) (n = 20).
Methods. Fathers and mothers completed questionnaires about their children's personalities and maladaptive behaviours, their own parenting stress, and the fathers' level of involvement.
Results. Both fathers and mothers rated their children with DS as having more positive personality traits and fewer maladaptive behaviours. Possibly because of these positive perceptions, fathers of children with DS also reported less child-related stress, particularly in the areas of acceptability, adaptability and demandingness. The two groups of fathers were very similarly involved in child rearing. The personality, age and maladaptive behaviours of the children related to stress levels in the fathers of children with DS, while maladaptive behaviours, gender and the fathers' education levels related to stress levels in the fathers of children with other types of ID.
Conclusions. These results highlight the importance of examining parental stress and involvement with children with different types of ID.
Parenting 1(4): 317-337 (2001)
Less Stress, More Rewarding: Parenting Children With Down Syndrome
Robert M. Hodapp, Tran M. Ly, Deborah J. Fidler, Leila A. Ricci
Objective. We argue that, compared to other children with disabilities, parents of children with Down syndrome may experience less stress and more rewards. Design. After reviewing changes in studies examining parenting children with disabilities, we note how specific genetic disorders predispose children to different, etiology-related behaviors, which in turn predispose their parents to particular reactions. We then survey studies of both stress and rewardingness in parents of children with Down syndrome versus children with other disabilities. Results. Parents of children with Down syndrome report less stress and more child-related rewards than parents of children with other disabilities; indeed, parents of children with Down syndrome may feel equally rewarded compared to parents of same-aged typical children. Conclusions. By comparing feelings of parents of children with Down syndrome versus children with other disabilities, we begin to understand which child behaviors bring about which parental reactions. Such information provides both theoretical and practical benefits to professionals interested in parenting.
American Journal on Mental Retardation 100 (2): 115-127 (1995 Sep)
Effects of children with Down syndrome on parents' activities
Barnett, W. Steven; Boyce, Glenna C.
Rutgers University, New Brunswick, NJ, USA
Investigated the effects of children with Down syndrome (DS) on parents' daily activities. Data on the allocation of time to daily activities were obtained from time diaries provided by 2 samples of parents with at least one child under age 17 yrs. Parents in one sample had a child with DS; parents in the other sample did not. Both parents of a child with DS devoted more time to child care and spent less time in social activities. Mothers of children with DS allocated less time to paid employment and increased child care time by 9 hrs per week. Fathers increased child care time by 4 hrs per week and reduced social activities by 2 hrs per week. Time allocated to shopping, passive leisure, personal care, and educational activities was not affected.
Leisure patterns of families who have a child with Down's syndrome
McLachlin, Laura Jane
Texas Woman's University
The study investigated the question "How does a child with Down's Syndrome impact family leisure patterns?" ln-depth interviews were conducted with 25 intact nuclear families who had at least three children one or more of whom had Down's syndrome. Four major conclusions were made. First, subjects perceived family members to be an important element of leisure experiences. Second, the majority of family leisure time was spent in sports-related activities, vacations, and television and video camera recorder (VCR) watching. Third, parents viewed recreation integration as a positive experience for both the child with Down's syndrome and for other children. However, minimal parental involvement in advocating for community services was reported. Finally, in most cases the presence of a child with Down's Syndrome did not significantly alter family leisure patterns. Some families, however, exhibited extreme adjustments based primarily on the severity of physical complications and behavioral problems associated with Down's Syndrome.
Canadian Journal of Psychiatry 34 (6): 519-525 (1989 Aug)
Marital intimacy in parents of exceptional children
Fisman, Sandra N.; Wolf, Lucille C.; Noh, Samuel
Children's Hospital of Western Ontario, London, Canada
Examined the role of perceived parenting stress and parental depression on marital intimacy between parents of handicapped children vs developmentally normal children, and investigated discrepancies between husbands' and wives' reports of marital intimacy. The parents of 31 autistic children (mean age 9.34 yrs), 31 Down syndrome children (mean age 9.11 yrs), and 62 developmentally normal children (mean age 7.62 yrs), matched for both mental and chronological age were studied. Results indicate significantly greater stress and depression, as well as lower marital intimacy for mothers of autistic children than for mothers of normal children or for mothers of Down syndrome children. Fathers of autistic children experienced significantly higher parenting stress than the other groups, as well as lower marital intimacy.
http://www.he.net/~altonweb/cs/downsyndrome/index.htm?page=parentalstress.html
on a personal note...I have 3 children. All 3 are active in the community, scouts, sports, church groups, school functions. They are well-adjusted and happy children. We own our own business (yes, Im on the pc at WORK...wanna tell my BOSS? ;) Somehow I think I have more pull with him than you do.) My son plays football, requiring practice 4 nights a week plus a game (during the early season, we go to 2 nts plus a game in 2 weeks) This is HIS time. Youngest (DS) is with Daddy while this happens. Oldest is usually working or hanging with friends, she is a teenager, after all. Tonight we will juggle a bit, because youngest needs to be signed up for soccer (on a typical kids team, in case you are gonna ask any more dumb questions.) We, as a family, work to make whatever needs of our FAMILY happen. We have learned that we are a team, and I can assure you we are a tight knit, loving family who work hard to meet the needs of EVERY member of our family. I have chosen the things that matter most to me. I am not a partier, do not go out much to clubs etc. We tend to do family stuff, and our home is routinely full of children, our friends, and our family. We are happy. There are no rose colored glasses. We are aware that the future may throw us some wrenches. We are STRONG. And we will deal with those things as they happen.
To the PP I love that great. I want to add we should just igonore that anon and keep posting things that like that.
Ignore the bigots and move on.
I don't think what some of the other people (the civil, mature ones) posted sounded as if they are bigots. I think they just have a different opinion than you. If that constitutes bigotry, then you're guilty of it as well. Think about it.
Way to go Michelle. Looks like you shut that annoying guy up. I cant understand why our society cannot learn to accept retarded/syndromic children. Plus the Down syndrome kids are sooooo cute...with those mongoloid features.
Just because they cannot contribute to society in the conventional way, michelle has shown that they are not a financial burden. Why, the guy bagging groceries at my local grocery store is a DS patient and look perfectly happy.
No the one on this board that is bigot is the person that thinks our kids are better off dead then here. Have you not been reading this. It is one think for having a Ds to not be a persons choice. It is another calling us names, or acting like we have time on our hands
Dont you guys have anything better to do than send petitions when there are so many more important things the government needs to focus on. Live in your little bubble where DS patients are 'joyful' and 'handsome'. But please leave the others out of this. Hopefully gene therapy will enable us to cure this disease in the near future and then we will not need to have these mindless arguments.
Ok civil my ass that is civil.
First of all that person commented with out reading the post in its entirety no one even mentioned a petition. People put words in our mouths.
And time on my hands... I wish, I work 30 hours a week, Plus a job typing breifs from home a few hours a week. I am a PTA President, a cub scout den leader, I run many major fundrasiers a year, I am a member of a club that raises money for Mulitple Sclorosis and Diabetes. Not to mention shuffling to sports, band and other lessons.
So time on my hands please. I manange to do all including dinner every night before the activies and keeping the house the way it needs to be, I get up at 5:00 am to do what I have to. As far as my son's Therapy it comes to me other than that and few appointments I would be doing all of that if he were not here.
Now as far as divorce I know not ONE child with Ds in a one parent household, execept one and it was single parent pregnancy so there was no divorce.
I personally have been have married for 10 years. And a very happy 10 years at that. All my children have enhanced it but my son with Ds has brought us closer in ways that we can not even imagine. We are thinking of having our fourth soon and Ds or not what we were once afraid of we welcome. If god has ment us to have 2 children with Ds then so be it.
I do not sugar coat anything it can be hard. I have been lucky, no health problems at all. No heart defect and the only surgery was ear tubes that my older son had too. Glasses for crossed eye, my older son had too. He is very high functioning.
I have not experienced what a lot of mom's have I am lucky but I would not love him any less had he had the problems anyway.
So please do not tell us some people do not want mentally disabled people on the streets.
You know I saw a commerical for Lou Gereg's disease the kid that had it was 18 he is suffering and will die from this. If they could have predicted he would be suffering later with test should his mother had an abortion. Because that is what some people are saying in around about way. Only my son is not suffering nothing even close to it.
I cant understand why our society cannot learn to accept retarded/syndromic children.
Would it shock you to know that people like yourself are in the minority? People go out of their way to welcome Ciarra, from coaches who choose her for their teams to friends who call ALL the time for playdates. Why? I dunno, maybe because she loves them fully, with no reservations. Maybe because she doesnt have a mean bone in her body. MAYBE just because shes a nice kid. People like you are not our experience. In fact, the ONLY place we have ever encountered such ignorance has been online. The real world is welcoming and loving. Yes, they recognize that my daughter is different. But they rise above it. I have seen more people battle their own preconceptions and love her despite whatever negativity they had ingrained about DS. Like me, people have been surprised at her sweetness, her ability, and her spirit. I know what you're thinking. "Most people terminate." No, most people do NOT terminate. Most people who CARE about the number of chromosomes their children have terminate. MANY people accept the gift God has given them.
Plus the Down syndrome kids are sooooo cute...with those mongoloid features.
Call them whatever you like. But yes, they are beautiful. And it is more than skin deep. It radiates, and those of us lucky enough to bask in it have learned a great deal about true beauty. Give me these "mongoloid features" any day of the week, as long as they come with this loving heart, these life lessons, and this ability to reach (almost) all the coldest hearts.
Just because they cannot contribute to society in the conventional way, michelle has shown that they are not a financial burden. Why, the guy bagging groceries at my local grocery store is a DS patient and look perfectly happy. Hmmm, perhaps you do not appreciate having someone bag your groceries? I sure do. Ever been to Sams club? They dont bag em, dont even provide the bags. That young man is doing a service that I for one greatly appreciate. Funny, my dh is a mechanic. He isnt a white collar worker, and sometimes he gets grease under his fingernails. No, he isnt a high level worker. But he keeps their cars running, and the service he provides is an integral part of our society. People come from miles around, business men in suits who make 50 times what we do a year. Why? Because no matter how high paid the job, it is the little people on whose backs this world runs. Your 200 thousand dollar car is pretty damned useless without a good mechanic to keep it running. And my groveries wont make it to my car without a good bagger who knows his stuff. The guy who bags yours is contributing to society, and so are the people I know with DS. They remind us that we are tiny, inconsequential (oh, all except you, of course) cogs in a great big machine. It takes all of us to make the world go round. And when the day comes that we are stripped of every material thing, and all we have left is our own reflection to look at, give me one of "them" over one of you any day of the week.
Wow, is that all you can come up with...people with DS are not contributing to society if they are grocery baggers...how cliche. (rolling eyes). I come across 100's of useless "typical" members of society every week...no job, no home...what is their excuse? Is it okay for an average person to be just a grocery bagger?...or are you just against grocery baggers in general? Cause the grocery store I go to has many 40+ year olds, bagging groceries for a living, and they don't appear to have any physical or mental disability preventing them working elsewhere. I know, it must be there stepping stone to their next career move right?
"In fact, the ONLY place we have ever encountered such ignorance has been online. The real world is welcoming and loving."
The fact is that most people are good actors. Odds are that the ones who are polite to your face in the real world are actually feeling very sorry for your child and you. They then express their true feelings on blogs such as this. Yes, like it or not, the truth is that many people fake it in real life situations with false pleasantries and compliments about cuteness for the sake of being kind and not offending (it's called etiquette). In cyberland, the filters are removed and their true sentiments are revealed. Some are hateful, yes. Most are just thankful that they aren't living your life.
I believe that can go both ways. I feel sorry for people all the time, whether they are in a wheelchair, have some obvious birth defect, are hearing or visually impaired, autistic, or someone who is just not that attractive. But the difference between you and I is that I feel sorry for them in a compassionate way, not in a cruel way. Even before I had a child with DS, I felt compassion for them, and I would never get online and degrade them...besides, what's the point of you even being here? Do you think you are actually talking to the right audience that might at all physically see this blog?...NOT! Your current audience here are people that already have children with DS, or people that have already tx'd for DS or some other non life threatening dx. The parents that you so badly want to read your drawl are not watching THIS blog. (rolling eyes again)
The difference between you and I - you are cruel and nasty and have no ethics or morals. I can guarantee that people feel sorry for you too, but they just have good etiquette not to say so to your face too.
I bet you were the kid that got picked on in the schoolyard, and this is your only outlet for retaliation...the only place where you feel superior...you have a big chip on your shoulder as a result of someone that made you feel inferior at some point in your life. Get some therapy for that.
Do you really think you are saying anything that we haven't already heard? Oh, and by the way...our skin is pretty thick, so you need not continue.
This whole converstation is nuts. We know who our kids are and how wonderful they are. We know this is no Dr. with a 200K Car.
Just as this blog got constructive again she/he showed up. This is obviously a person with too much time on their hands.
Have I encountered people that have said stupid things to me about my son. Yes, of course I have. But I doubt the women and men that stop me to tell me how cute he is and how handsome and well behaved my other two are mean it. They are tottaly unsolicted compliments.
Very few come up to you with dumb comments. My son's features are mild so very often people do not even realize it for while that he has down syndrome very often they ask why he is not walking yet and then I tell them. Sometimes most of the time good things are said sometimes not so good things. I take it and move on.
You know Jamie Foxx the actor said in his oscar speech his sister with Ds is 4 feet 10 inches tall of pure love and he does not know what he would do without her. (she lives with him)We all know as parents, siblings, and grandparents of Ds that is not something we wish for and hope but we have learned that people that know them embrace them.
Ignore that jerk and get back to the blog's orginial topic.
Sorry it is early and I am getting ready for work made a typo.
Yes, of course I have. But I doubt the women and men that stop me to tell me how cute he is and how handsome and well behaved my other two are dont mean it. They are tottaly unsolicted compliments.
"You know Jamie Foxx the actor said in his oscar speech his sister with Ds is 4 feet 10 inches tall of pure love and he does not know what he would do without her. (she lives with him)."
The last four words of the the quote are the most important: "She lives with him" (why? because she can't live alone).
If it makes you (supposedly) kind mothers of special-needs, mentally retarded offspring feel better to think that others who don't agree with you are miserable and have an awful life, go for it. Keep lying to yourselves. You've obviously gotten very good at it.
If I had as much $$ as Jamie Foxx and my sisters and their kids wanted to come live me fine. His typical sister lives with him too. She runs his production company and the sister with Ds works there.
If igornace if bliss honey you must be really happy. The difference is I have a son to hold not a grave to visit, because I believe you might have terminated a child with Ds or you would not be so hostile.
Pro Choice means the freedom to make any choice even the ones you do not agree with. You are pro abortion not pro choice.
Any you are not worth anymore of my time this morning. I have a job to go to and kids waiting for me there. Not to mention I have my own wonderful children to get ready for thier private school they go to.
Once again, there are two completely opposite viewpoints when it comes to hot topics like this. Those who have special needs children (Down syndrome or otherwise) will sing the praises of their children until the cows come home (being and advocate for their children is expected, but being a zealot is quite another thing). Those who don't see the various syndromes (T21 and others) as something wonderful for their unborn babies will also stand their ground and defend their right to choose. That doesn't make them pro-abortion by any means.
Like all things in life, everyone is entitled to their own opinions and viewpoints. It's easy to scream "discrimination" or "hate" when someone doesn't agree with us (but it's not true). Everyone is supposed to embrace diversity and accept differences when it comes to the mentally disabled. Where is that same consideration for others? It doesn't go both ways.
No matter how much everyone fights it, there will always be a large majority who will opt to terminate when given poor results from a CVS or amnio (and these are not ignorant parents, despite the myth others like to propegate).
Take care of your kids, take care of your business, and let others make their own choices without your criticism.
Keep lying to yourselves. You've obviously gotten very good at it.
Yes...we are the liars...the mothers of kids with DS...we have oodles of free time to sit around and make up stories of how much we love our kids, of course...that is only after wallowing in misery for most of the day, RIGHT?
Come on..admit it. The liars are the people who dispose of their child because it didn't measure up and then play the martyr..."we did the loving thing" "we chose to take the pain on ourselves" "we made the decision only a loving parent would" "we, we we we we"
I think you are all full of it! You need to tell yourselves these lies to get thru the day. Fine. Go for it...knock yourselves out! But know that they are lies!
You want to put a value on a persons life based on what they do for a living??? How about yourself...sitting at a computer all day, making up lies about being a high paid doctor while bashing and ridiculing the disabled. WOW!!! I'd love to meet you in person...better yet...I'd love to be a fly on the wall when YOUR TURN comes!
You make me sick...
oh darn, you just ruined my happy little illusion. I better call the parents who are calling ALL the time inviting my kid over that they had better just stop it and admit the truth. Better tell EVERY kid in her class, who came to a party we had, to turn around and go home. Man, I better remind the coach who picks her repeatedly for his team that his PITY is unwarranted. He is just trying to make me feel better when he tells me he would have 10 of her on his team because she plays fair, doesnt whine, and works hard. Dang liars. Oh, and next time someone crosses over the aisle in the mall JUST to tell me how adorable and charming and beautiful my kid is, Im gonna punch her lights out for bothering me. Silly me, I have no excuse for falling for it...for EIGHT years now...constantly....everywhere we go. I think Im gonna make me a sign that says "dont bother, i KNOW you are just trying to make my mom feel good". Is it ok with you though if I wait just a FEW more days? see, I got this big day planned Saturday, going to a friends house for a BBQ and then the movies, and a sleepover. I think Im just gonna let those fools keep telling me how much they enjoy my company till AFTER I get my goody bag. MMMMMMMMMMMMKK?
If that's what it takes to get you through the days, then that's fine. Thankfully, the majority of mothers of children with T21 are realistic and refuse to behave as poorly as certain others do (that's why they're still posting on many special-needs websites while telling off and banning certain others, knowing that they give everyone else a bad name by association).
You say toe-MAY-toe, I say toe-MAH-toe. I will agree to disagree. Apparently, you won't. Not surprising at all.
Good luck. Seriously.
If you think for a second you can get the last word...can you say "uh uh"?
Why don’t you get some balls and post your name (like you would even use your real name – although we already know what that is). Tell me, how are YOUR kids doing? Do you think for a second just because your prenatal tests for them came up "okay" that there are guarantees that they will be anything of value when they grow up? Do you really have delusions of them getting out of the trailer park and becoming a lawyer (or how about “playing a doctor on the internet")? Maybe some of our kids will be baggers in checkout lines – but at least they’re not cleaning the floors beneath the baggers feet as yours probably will be.
It's clear by the way you slam our kids that you have serious problems yourself. We spend our time defending our children - to give them the same rights that your children unappreciatively have "naturally". Just what is your cause? If you are so okay with your obvious decision to terminate due to a poor prenatal diagnosis...how come you are defending it so vehemently and slamming our kids in a feeble attempt to get your sorry point across? I would think that if you were okay…you would have moved on by now.
Please get some help.
"I would think that if you were okay…you would have moved on by now.
Please get some help."
Perhaps someone should practice what she preaches ;-)
Unfortunately due to people like you - we have to fight for our children every day. So what is your cause?
People like me? I support a woman's right to choose. I've even stated that deciding to bring a child with a known disability (T21) into the world is a valid option for some parents. However, for most (90%+), it's definitely not. Either choice is fine, even if not everyone agrees with it.
What's my cause? Obviously it's standing up for what I believe, just like you. As with all topics in life, everyone sees things differently. I don't expect you to agree with me, nor should you expect me to agree with you.
As always, handle your circumstances as you should and be an advocate for your children. Just realize that in doing so, not everyone else will see things through your eyes. It's your reality and not ours. You claim to like it that way. We do to. Accept it and move on.
"a valid option"? Oh, how compassionate of you.
I also support a woman's right to choose. That doesn't mean that I believe in selective abortions.
I know what the numbers are. Can you tell me that all 90% are informed choices? Certainly not if their information is coming from sources such as yourself - with absolutely no experience other than terminating due to a possibility of DS.
Please stop trying to inform on anything other than what you have experience with...which would be seeing that your child may not be "perfect" and deciding to terminate.
"sources such as yourself - with absolutely no experience other than terminating due to a possibility of DS"
First of all, I don't know of a single situation where a parent opts to interrupt a wanted pregnancy "due to a POSSIBILITY of DS". CVS and amnio don't point to "possibilities". The karyotype is 99+% accurate. I have yet to hear of a REAL person who had 47xy +21 or 47xx +21 on their CVS or amnio results and went on to deliever a "typical" child. If that ever REALLY did happen even once - in our world of doctors dotting every "i" and crossing every "t" so as to avoid lawsuits from unscrupulous people - it would be all over the news nonstop. The pro-life die-hards would never let that one go. It just doesn't happen that way.
Also, if you had paid even the slightest bit of attention and put to memory any of what I had stated before instead of trying to "one up" me constantly, you would have realized that this is NOT about "perfection". I know that you and others in your group won't believe that, and that's your (erroneous) perogative. It's about what 90%+ feel is right for THEIR child (not YOUR child). Whether you like it or not, people very thoroughly research whatever poor prenatal diagnosis their baby may have prior to making the painful-yet-loving choice to tx. It's probably hard for you to accept, knowing that others may view your real life experiences and of others living with T21 as something undesirable. Unlike you, I can see beyond my own nose and understand how that would upset you - especially if you choose to take it personally. What you don't want to admit is this isn't all about YOU or YOUR CHILD. Beliefs are totally subjective and personal....for ALL of us. I can choose to let what others say in anger bother me, or I can consider the source and their reference point...and accept that they see things differently than me. As I said before, it's all about diversity and acceptance (two things you demand for yourselves, but fall short on reciprocating for others).
Reply if you must (and I know that you will). It won't change the facts.
Neonatal Doc - THANK YOU !
Anon: 12:42:
Have you heard of confined placental mosaicism? Yes, there are real women who have terminated healthy babies with 46 chromosomes based on CVS results which diagnosed Down syndrome. The autopsies have confirmed healthy babies. Just for the record.
oh, the fog clears. Persephone, Reality Chick, Grace, Bridget O'Reilly, whoever you are this week...(And did you really intend to base the Persephone Returns name on a woman who lived with one foot perpetually stuck in hell? I mean, doesnt that give you the creeps? Its very fitting, but I didnt realise you were so aware of your own reality) Your history proves clearly why it is you continue to bash children with DS. It really is no fun debating with you, the compassionate thing to do is pray for you, and your son.
I always wonder why it is though that you can't wrap your teeny little brain around the fact that demeaning kids with disabilities is JUST like demeaning your own child? Oh wait, your kid wasnt WORTHY of respect, much less life. He was DISABLED. You choose the compassionate, kind, loving way for your child, and we will choose to continue to say it was anything but compassionate. Agree to disagree, right?
Hey, one more thing? If this was all about love and respect and all that BS for your child, why is it that you see kids with DS as such...oh I dunno, cretins, lowlives, scum? I mean, you had a child just like ours. And it wasnt because you, personally, couldn't handle it, right? You did it for him, isn't that true? Cause it sure does sound like you just plain old dont LIKE kids with disabilities. Even...him. But, as usual, perhaps Im wrong. You are a loving, compassionate...Mom. (Is it ok to call you a Mom?)
"Have you heard of confined placental mosaicism? Yes, there are real women who have terminated healthy babies with 46 chromosomes based on CVS results which diagnosed Down syndrome. The autopsies have confirmed healthy babies. Just for the record."
That's a shame. I don't know of anyone that would base such an important decision on a mosaic CVS result. Even the most basic of medical literature suggests following up ANY mosaic CVS result with an amnio as a double check. If that really happened, then perhaps the person in question was one of the very few who didn't do their research. It would be interesting to see that "record". Do you have the source?
Michelle. I'll be praying for you, too (and Alex's sweet soul). You of all people should know better than to "throw stones". ;-)
Now really -- get over yourselves and MOVE ON. Focus on your families and stop criticizing everyone else for not blindly agreeing with you.
Guess you've come out of the closet, now. Still not using your name, though. Hmmmmm...
"What you don't want to admit is this isn't all about YOU or YOUR CHILD." Oh honey, I KNOW that. I wouldn't be wasting my time here otherwise bickering with you. I could absolutely care less what you think about my son and hope to God you never, ever cross our path.
"Now really -- get over yourselves and MOVE ON. Focus on your families and stop criticizing everyone else for not blindly agreeing with you." Couldn't you also say that to yourself?
Neonatal Doc - you've now become the hero to the "termers". I know you think this is all fascinating reading - but you are not thinking of the harm overall this "record" is causing. I asked you to please delete inappropriate comments and threads (yes, that does include some of my own responses to others that should be deleted).
oh, now see? I just knew you couldnt resist throwing Alex's name in there. I was just thinking that really, it isnt just disabled kids you dont respect. It's ALL kids. I realised that when you used the term "tender chunks of Alex" in a post to me one day, and then used it in an open forum on your board, sort of like a tease, trying to hurt me. You probably know it disturbed me. I guess you have a tiny bit of...(well, I wont call it humanity, but...restraint? Wait, thats not it either.) But see, it didnt disturb me because it hurt me, it disturbed me because it shows who you really are. Under all that political correctness and "I did it for my child" bull, you really are just a cold, hard hearted cruel human being. One who is so not beneath using a murdered three yr old to get points. Low. Dirty. Fitting. All those people who flock to you and your patronizing crap abo0ut how the Catholic church REALLY doesnt blame them for aborting, all while using the name of a demon. Yikes. I think Alex is in pretty good hands right now, and while I never refuse prayers, I think you might need to focus a BIT more on your own salvation. God doesnt like ugly.
"God doesnt like ugly." Oh boy. If that's really the case, then there's a huge group here in big trouble right about now. ;-)
Seriously, don't always ASSume that you know everything (about others, who is posting what and where, and so on). You know what they say about ASSuming anything, right? Deal with the fact that a certain individual's reputation procedes them and their past is public knowledge on both sides of the tracks (for the "lifers" and "termers" as well, to use your jargon). You need to take a step back and look in the mirror before even thinking of passing judgement* on anyone else (*not to mention that the godly know better... it's not their place to judge others).
Neonatal Doc, you are NOT looked upon as a hero because you encourage tx's. You never did such a thing. You're about as fair and honest as they come. That just goes to show (and validates my point) how these same "commenters" are again turning this into their agenda and a "me, Me, ME"-fest. They twist things around and incorrectly state your stance for you (they like to do that). Ridiculous. I think that the majority of respondants (including myself) have been kind, albeit quite matter-of-fact; but, I guess certain "facts" are just too in-your-face for some people (when denial is so much easier).
Like I've stated before, I take no accountability for "Dr. Chip"'s posts or the majority of the other "anonymous" offerings on this particular "Down II" thread. I will only do so for my own, and (unlike others), I have been more than fair. Not everyone has to agree to see things my way; but, I don't have to agree to see things their way, either. Why can't certain people grasp that simple concept?
To quote Rudyard Kipling, "East is East, and West is West, and never the twain shall meet". So be it.
Michelle, I read up on my mythology, just to see what on earth you meant. You are right, that name is disturbing, given the postings of this person, who doesn't seem to argue that she is who you say she is.
http://www.pantheon.org/articles/p/persephone.html
Persephone
by Micha F. Lindemans
Persephone is the goddess of the underworld in Greek mythology. She is the daughter of Zeus and Demeter, goddess of the harvest. Persephone was such a beautiful young woman that everyone loved her, even Hades wanted her for himself. One day, when she was collecting flowers on the plain of Enna, the earth suddenly opened and Hades rose up from the gap and abducted her. None but Zeus, and the all-seeing sun, Helios, had noticed it.
Broken-hearted, Demeter wandered the earth, looking for her daughter until Helios revealed what had happened. Demeter was so angry that she withdrew herself in loneliness, and the earth ceased to be fertile. Knowing this could not continue much longer, Zeus sent Hermes down to Hades to make him release Persephone. Hades grudgingly agreed, but before she went back he gave Persephone a pomegranate (or the seeds of a pomegranate, according to some sources). When she later ate of it, it bound her to underworld forever and she had to stay there one-third of the year. The other months she stayed with her mother. When Persephone was in Hades, Demeter refused to let anything grow and winter began. This myth is a symbol of the budding and dying of nature. In the Eleusinian mysteries, this happening was celebrated in honor of Demeter and Persephone, who was known in this cult as Kore.
The Romans called her Proserpine.
Her names means something like "she who destroys the light."
http://messagenet.com/myths/bios/persephone.html
Hades gave her a pomegranate seed to eat. By doing this he bound her to himself and his kingdom. When Demeter found out about the trickery she was angry but she was also resigned that there was nothing she could do... her loving daughter was bound to the Lord of the Dead.
ENCYCLOPEDIA
PERSE′PHONE (Persephonê), in Latin Proserpina, the daughter of Zeus and Demeter. (Hom. Il. xiv. 326, Od. xi. 216; Hes. Theog. 912, &c. ; Apollod. i. 5. § 1.) Her name is commonly derived from pherein phonon, "to bring" or "cause death," and the form Persephone occurs first in Hesiod (Theog. 913; comp. Horn. Hymm. in Cer. 56), the Homeric form being Persephoneia. Being the infernal goddessof death, she is also called a daughter of Zeus and Styx (Apollod. i. 3. § 1 )
In the Orphic myths, the maiden goddess Persephone was seduced by Zeus in the guise of a serpent. She bore him a son, the godling Zagreus, who, when Zeus placed him upon the throne of heaven, was attacked and dismembered by the Titanes. His heart was recovered and he was reborn through Semele as the god Dionysos.
Either this woman has a few screws loose, or she is dangerously aware of the meaning of her chosen moniker. Either way, she is crazy as a coot. Ignore her.
Why is it so difficult for those of you not parenting a child with Down syndrome to understand that by saying life is good we are NOT "in denial"--if I hear that phrase one more time I will scream.
We are the ones living with and raising these children. NO ONE is saying that there aren't challenges and difficulties. But for my family life is good. That is not living in denial or sugarcoating the truth! An IQ score and its implications aren't going to change the joy we find in our child.
you would have realized that this is NOT about "perfection".
If it were not about perfection you would have kept your child. You are the one who is not being true to yourself.
And your a bigot I have been reading this blog I saw that some were trying to put it straight after the weekend. And yet you are back to start more arguments. Go back to Baby Center and stir up your crap there. You sound like someone from there.
And you are not Pro Choice as some have said prior you are pro no disabled children.
You see there are mom's who are pro choice that have choosen to have their children with Ds.
I used to be one of them. But all that changed with my son. I will tell you that I still respect a women's right to choose but with people like you around I would rather seen it done away with.
You are like a pedophile. Other than praying on children you pray on mom's with PPD attacking them at the very moment they find out talking them into termination giving them no hope, trying to make them see the "light".
You are not worth the dirt under these mothers feet. How you talk about your kids as angels. They are angels sitting with God because you put them there, and then you want people to feel bad for you. You lost your "wanted" baby.
You should accept the struggles that god gives you and you will overcome them.
I think this is not about our kids sometimes but your own sorry self feeling guilty about what you did. You see us happy and can not take it. You realize what you gave up and you make yourself sick over it so you lash out at these mom's.
My forgiving nature wants to feel sorry for you. But you know what I don't. Frankly I could careless.
You go beyond giving your opinions. You harrass and stalk women who have children with Ds. You are one sick person, and you need help.
Beside what about your busy Dr. life. I say somewhere you living in the basement. I do not doubt that. I was at work all day at a school. You were on this computer.
Enough Said.
I have to agree with the previous poster. In all honesty there are some challenges that I didn't have with my other children who don't have Ds. That being said again in all honesty, there is a much greater reward, greater empathy and greater pride in parenting my child with Ds. THAT is what surprised me the most, THAT is what took the wind from my sails, and not in the way that you might imagine. The preconceived notions that I had about parenting, particularly a child with Ds is completely different than my reality, and that's the truth.
First I should say that I am pro-choice, but I have to question how much research goes into making a decision to "interrupt" a pregnancy with a PPDx of Ds. My thought process behind this statement is that so many times I see statements such as "downs syndrome" "downs baby's" "suffering with downs", anyone who has done even a little bit of research would recognize that it is "Down syndrome" singular. In almost every bit of information available either on line or in print the verbiage is clear, yet so much of the time people who "interrupt" use incorrect vernacular. This leads me to assume that they really have not READ what was before them, I doubt that they have spoken with parents of children with Ds.
In fact in one instance one woman searched for information that wasn't "misleading" because of an advocacy slant on sites, she searched long enough to find something she felt was "bad" enough to allow her to terminate, now how sad is that??
I can relate to someones fear of the future, I was there myself, but because I want MY LIVING CHILDREN to embrace diversity it was important for me to do so my self, how can you ever teach your kids about that without believing it yourself??
And Grace or Reality Chick or whatever you want to call yourself today I am appalled by your thoughtless comments directed at a child who was murdered, how insidious is that? I will never understand your level of loathing..
"I am appalled by your thoughtless comments"
Well now isn't that the pot calling the kettle black ! (or is that little cliche'/comment considered as inappropriat "hate speech" as well).
Facts are facts. Typos are typos. If you consider people who spell words or terminology incorrectly as "uninformed" or "ignorant", then several of your own group could be the poster children for "uninformed" and "ignorant" - isn't that right, Robin? (FYI - There's a neat little feature on PC's. It's called SPELLCHECK). ;-)
Again, get over YOURSELVES. This really isn't about your kids with T21. It's all about YOU again (and again and again and again). Your kids are here and deserve everything that is available to help them. I've never debated that fact. The thing that I will debate tooth-and-nail, however, is a woman's right to choose. It's an individual right to choose once a PPD is received(and YES, T21 definitely falls into that category).
I'm sure that - much to your dismay - those who go the route that you "never" would aren't anything like the "monsters" you concoct them to be. They are NOT pro-abortion. Under most circumstances, they wouldn't even entertain the thought of doing so. However, in cases of chromosomal disorders, many are thankful that this legal and loving option is available.
No matter what you say, the facts still speak volumes. Your refusal to accept this doesn't change a thing.
I agree with the PP. Very well put. I on the other had have had more challanges to this point with my typical children. My middle one has ver bad asthma and has to be constanly watched at school. My older one has ADHD and although is a smart student in a gifted program this year he has behavioral issues that can prove to be very challanging, I have been called into school a lot and since he goes to private school it gets to be a big issue.
I have yet to really have any health problems with him other than ear tubes. But I know we do not know what the future will bring, and I am sure as he gets older we will find that problems will surface and we will deal with it. Problems surface with what are thought to be typical kids, bumps in the road are just part of being parents in the end.
I grew up well to do and was sheltered, I was taught be polite and be nice to people differnt but other than a realative with Ds I did not know diversity.
I want my kids to know diversity to embrace it and respect it but not from afar like I did but up close.
This whole debate make me sad, because there should be no debate, you do not say horrible things about our kids and we respect other choices. But how do you respect someone when they attack you and your kids. Someone said that they understand we love our kids. No you do not or we would not be having this argument all the time.
I ruins it for people looking for real information. The PP is right about Ted Kennedy, there is nothing wrong with wanted people be educated.
Anyway that is how I feel sad it always has to come to this. And I hate myself for getting into it all the time but how can you not.
After a while you want to get out all the anger you have for people like that are posting on this blog. Why did they even have to come here, if they were not going to be constructive and polite about how they feel.
I do not understand how someone gets their rocks off on hurting people. There time will come one day and God will be ultimate judge, but I think that is part of it too. You can be that mean to kids and belive in any God.
My therapist was here yesterday reading this and she was sick to her stomach. She said ignorace comes in all shapes and sizes and she has never seen so much ignorace, by the people attacking our kids.
For some reason it would not let me put my name so I am signing it.
Robin
loving option
Loving...for whom...?
Well Grace I have never and I MEAN never made out any one who terminates a pregnancy a monster, if you remember, I said that I was pro-choice, and truly I believe that a woman should have a choice.
But if we are completely honest here, it is not a loving decision on the part of a child to "send them to heaven early" because they have Ds. That being said, I do think that there are reasons to terminate a pregnancy, I do not feel that most women who terminate for Ds have the foggiest idea of what a life living with Ds entails, truly I don't. But without question they have a right to make that decision, perhaps it is us who have failed in this endeavor, we have not educated widely enough apparently, and that too is a fact. But please keep this in mind, we are weak in numbers, most citizens do not know a person with Ds, they do not have first hand experience....
I believe, and again this is just my opinion, that the decision to terminate a pregnancy with Ds is based mainly on a parents perception of THEIR life with a child who has Ds. Maybe sometimes a person feels that they are not equipped to jump the hurdles, and there are some, but this is a decision that is based on a parents perception, not based on a "quality of life". I personally find it selfish, but that's okay, as long as the person realizes that... I find it ironic that parents will terminate a pregnancy and then want some type of empathy, they choose that path, live with it... Why mourn the life that you have willing and knowingly taken? Maybe you could explain that to me, because truly I don't understand it.
Oh and by the way,this is not Robin if you were insuating that I was, I doubt you know me.
I am assuming that the anon that will not tell us her name the terminator is from Baby Center.
You see you never listen do you. I have supported termination for lethal dx. It is not something I would do personally but I have supported someone. And her I when I decided to have my son.
I always said termination is not for me but I will not tell others what to do.
It is like some kind of sick race with you people. Who can get to the poor women with the PPD first we run so you do not put incorrect information and feed them your garbage because you hate the idea of our kids being here. And we run because we need to beat you at your own game, but not out of some sick twisted idea that you need to get these women to tx but out of love for these wonderful kids and the mothers that might regret it.
Look if a Mom says right out I want to terminate that is something else we should leave her alone, the same goes for "terminators". But God forbid a poor women is confused it is like feeding time at the zoo mostly from the women who terminate them say the support any decision but they lie like rugs.
Say what you want anon, you people stalk, harass, name call on daily basis. You send horrible emails to moms with Ds with fake ID's and run. You are cowards. If you really stood up for yourself you would not do it with fake ID's you tell us who you are.
Now that is not supporting people’s choice. I may not agree with your choice but I can support it. You choose not to believe I can support it. I think it you do feel guilty about your child. I can not imagine why anyone would lash out at parents and make it a race.
I was pro choice my son changed that for me, but pro choice does not mean you attack parents for keeping their kids and that is what you are doing here. You can say you are not all you want but you are.
Frankly, most of you do not know the meaning of the word civil or again we would not be having this conversation.
I dont know what all this pro-life fuss is all about anyways. If you have something growing inside you that you are not going to cherish, you have the right to terminate the pregnancy, no matter what the reason. I think abortion should e made available on demand.
Last I checked abortion was available on demand, what is your point?
I think what the anon wants is late term abortion. You like partial birth. Where they murder the child as he/she is coming out.
Sorry to be graphic but that is what it is. Like the pp said abortion is there for you on demand.
You are riddled with guilt. How else can you explain your obsession with us? You try to convince us that we have made a poor choice, that we have no clue what we are up against. You have made a decision that you cannot put behind you...you terminated for the same reasons that we are celebrating. That drives you mad...you can't stand it. Therefore you have to degrade us and our children. Probably because you can't sleep at night, and you are constantly trying to convince yourself you did the right thing. Well I want you to know that I sleep at night and I look forward to the next day, everyday. I am pro-choice, you can go ahead and use abortion for whatever you feel you have to, it is fine by me, but don't criticize our kids or us for that matter...remember these are the same children that you too created, why don't you "get" that? You created a child EXACTLY like ours...and you can't stand to see others happy...must be hard to watch and see that they aren't so hideous and horrible after all.
Grace, it seems you think the person who said you had made thoughtless comments was me. Nope. I will use my name when I tell you you are an arrogant troublemaking piece of crap. But the other poster was right, thoughtless is one way to describe you. I have been with my son at football practice all evening, in case you wondered. Ciarra was at a friends house for a playdate. Our pitiful lives, you know the drill....
Anyway, lets get something straight, shall we? My sons murder was NOT my fault, although as you well know, I blame myself every day for the circumstances that lead up to it. I, unlike you, made a selfless, loving choice. I knew I was in over my head. Adoption and abortion are pretty different things, you know that right? I didnt hand my son to his executioner, willingly trading his life for my freedom. You did. Anyone with half a brain can see that you didnt do it for the altruistic reasons you claim. This wasnt about love. It was about ridding yourself of a child who disgusted you. Imperfection is not tolerated in your world. Which leads me to believe every mirror in your home must be covered tightly. How do you live with who you have become? I have made peace with Alex's death. I would never dream of speaking of the child you killed as chunks of anything. And when you get right down to brass tacks, honey, thats really far closer to the truth for you than it ever was for me. But denigrating your baby to hurt you? nah. I have respect for life, especially innocent life. The kid did no harm, no wrong. People like you who can even get those putrid words out of your mouth, much less form them in your heart? Sick, twisted, and despicable. But there is still hope, if you just ask for forgiveness. What was that phrase..."hold up one finger. Thats how many times you have to ask for forgiveness." Well, dear, thats for EACH infraction. Im guessing you have a whole lotta begging to do for forgiveness. If you think God will take lightly your cruelty regarding an innocent murdered 3 yr old boy, you are sadly mistaken. But then again, perhaps you really do pray to hades, in which case there is no salvation anyway. You seem to like the alliteration to the Goddess Persephone. Did you even know the mythical womans child was dismembered and killed by demons when you created it? I bet you think thats funny huh? Me? Not so much. I think it just illuminates even further your dark soul. Scary things in there. But things a little light can chase away. I might despise you, by the way. But you can count on the fact that I will NEVER speak badly about the child you had killed, because HE is innocent and deserving of dignity. Im done now. Have your say. But dont fool yourself that you have had the last word. I get the last word every single night. Four words, actually.
I.love.you.Mom.
Well said, Michelle!
Oh, and by the way, Grace...I never said that Neonatal Doc was a hero to you and yours because he encouraged termination. Read it again. While you're looking for that - notice who are the ones thanking him. I do not have any ill will toward Neonatal Doc (other than for allowing this bashing thread to continue)...I and the others only ask him to make more informed recommendations to his patients.
Did you know that you can see who is lurking on the Babycenter boards? Why are you tx'ers lurking on the DS board anyway? Can't help it huh...I know they are all so darn cute! Get a life people!
My definition of love= Tucking in my precious babe every night in his nice warm bed with a freshly laundered blanket, while singing his favorite song.
Your definition of love= Ripping the limbs off your baby, sucking him out while still alive or while not understanding the sudden pain 'humanely' stopping his heart so you dont' ever have to see his 'retarded' face.
The only reason YOUR baby would have suffered is because of your definition of love. Nothing else.
Wow that PP was harsh but well quite accurate. I still think all of this does not have to happen. And as far as telling who lurks on the BC board I am sure they can tell they is why they the so called Lurking Police. They want harrass mom's of babies with Ds but don't want to be harrassed in return.
This is the first time that I have seen all of us as group band together to stop this stupid crap.
This was a post from Baby Center and I do not know if you are allowed to copy posts but ban me I could give a shit less about that place anyway.
Your post was touching and inspiring. Both my husband and I truly think we realize how wonderful life can be with a DS child... at least as much as we can, without actually walking in your shoes
This women gets it. She not sure what she wants but she is well informed and waiting for her test. Personally I think she will keep him or her. Mainly because she was smart enough not let zip talk her into anything else.
That is what the terminators can not stand is someone having a heart.
I am sad to say that I don't believe for one second that she "gets it" and I would bet a million dollars that if the amnio shows T21 she will have an appt. to terminate before the sun sets that day. I believe she thinks its all well and good for others to raise children with Ds--but she doesn't want the inconvenience. I wish it were true that she got it. Time will tell.
I know Im not in charge of anyone here, but to those from "our side" who post such brutal language to the other side? Please dont. It just brings us down to their level. Their babies deserve the kindness of dignity and respect.THEY dont, but their babies do. Those little children deserve for us to not talk about them the way they talk about ours, chunks of meat, dismembered waste. They were babies like our own, and they died brutal awful deaths. We know it, and somewhere down deep THEY know it too. I just choose to respect the children who died. We dont change hearts by posting vulgar referances, we change hearts by showing OUR hearts. I hope that new mom will have her baby, and it is sad that anyone would say she wont. You dont know that. And as much as I think it is wrong to terminate, it would seem that she is at the very least getting informed first. We WANT that, right? Dont chase them away with the rhetoric. Just my opinion.
PS yes, it does feel good to band together for a change, but some idiot somewhere is going to destroy the fragile peace. Too bad, huh?
I agree, however...the shell of that baby is not the essence of what that baby is. The precious soul of their babies are in the loving arms of Jesus. I would never dis-honor their precious souls. However, we musn't loose sight of the horrible things these 'loving mothers' did, and they are judging US??? They try to sugar coat it by painting it all pretty and saying they did it out of love and they saved them....THAT is dis-honoring their babies. NOT bringing to light what they actually did.
Oh and Chelle...didn't you once call our kids 'unwanted garbage?' Oh wait...no...that was when you were posting as one of them. Hmmm...THAT is dis-honoring OUR kids. Think about that.
"PS yes, it does feel good to band together for a change, but some idiot somewhere is going to destroy the fragile peace. Too bad, huh?"
Michelle - please clarify in respect to the idiot part
And I think it is great that we are banding together too, but I don't consider retaliation stooping to their level Some parents have never had the opportunity to get "it" off their chest because the tx'ers like to hide and not be visible, they just hit and run or send emails from a false account... and we all know they are reading this...EVERY word.
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