Most who seek to adopt Down syndrome children have had a family member, friend or acquaintance with the disorder, or work with them in medical or school professions.Would you get amniocentesis for the purpose of learning whether your child would have Down syndrome, so you could abort that child? Do you think ill of those who do? What would you do if you had tried to get pregnant and believed in the importance of loving whatever child you were blessed to bear and your husband revealed to you that he would reject a child with Down syndrome? Would you have amniocentesis and abort a child with Down syndrome so you could go forward with another pregnancy that, you hoped, would produce a less flawed child? Would knowing that there are long lists of would-be parents who especially hope to adopt a child with Down syndrome affect your decision? Would it make a difference if those waiting to become adoptive parents had put their names on the list to discourage abortion or if, on the other hand, they simply had a special love for persons with Down syndrome?
"People think they are just great kids, people feel like they are very lovable," said Rachel Crews, a social worker with the Special Additions adoption agency in Stillwell, Kansas.
Changing attitudes toward people with all disabilities and improved medical treatments also are helping unite these children with families, advocates say.
"Society as a whole is much more accepting," said David Tolleson, executive director of the National Down Syndrome Congress in Atlanta, Georgia. "You are much more likely today to see people with disabilities in the media, places of worship, schools.
"Whereas in a prior generation, mothers were told when they had a baby with Down syndrome or another disability, put the child in an institution and forget about them."
That's what happened 34 years ago to a little girl named Martha, whose single mother gave her up for adoption. She was diagnosed with Down syndrome and placed in a group home in Cincinnati, Ohio.
But when Martha turned 4, Robin Steele and her husband met her and fell in love immediately. With one son already, they adopted Martha and have gone on to adopt nine other children -- three of them with Down syndrome.
"We just knew we wanted to make Martha part of our family," Steele said.
Martha's adoption also spurred the Steeles to help connect other families like theirs with families who felt they could not raise children with Down syndrome.
So, 23 years ago, they started the Adoption Awareness Program in conjunction with the Down Syndrome Association of Cincinnati. Steele connects people who want a child with Down syndrome with birth mothers or adoption agencies.
In the first year, she helped find homes for three children with Down syndrome. Now, Steele works with three to five situations a week, she said, and has a waiting list of 150. Waits average six months to a year.
"People with Down syndrome are pure in heart and spirit," said Amy Allison, executive director of the Down Syndrome Guild of Greater Kansas City. "They keep you grounded."
Allison said the organization does not monitor trends, but "there are easily more people contacting us interested in adoption than we have ever seen before."
March 10, 2006
"People with Down syndrome are pure in heart and spirit."
Did you know that there is an especially high demand to adopt children with Down syndrome? There are long waiting lists to get such a child. When I first saw this surprising fact, I thought it was part of the pro-life movement, an expression of opposition to the practice of aborting fetuses found to have Down syndrome, but that's not it:
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23 comments:
There is always risk associated with amniocentesis. Because I would not abort, I do not even get the triple-screen blood test, since any positive result would have to be confirmed with amnio. We take our chances. I would be greatly grieved to find out that my husband could not love a "flawed" child, but I'm blessed with a husband who doesn't have that attitude.
Tough questions, Ann! This is one of those challenging days at Althouse, I guess.
I would not and did not do an amnio. I did do the triple blood screen on my midwife's advice simply so that we would have time during the pregnancies to get used to the idea of any issues we might be dealing with.
I do think ill of those who would specifically get an amnio so they could abort a "flawed" child. At the same time, clearly such a person should probably not be parenting a child with special needs. And this is an easy thing for me - whose been blessed with healthy children and not dealt with these issues outside of the hypothetical - to feel.
I would be devastated if my husband felt differently. But I would have to abide by his wishes. Knowing there was a long list of parents looking for my child would definitely make a difference.
No it would not make a difference to me if said people wanted to save my child because they oppose death or because they especially loved my child.
Dave - parents of children with Downs syndrome impress me as well. Parents of adults with Downs syndrome too.
A child with Down syndrome is not in the least bit flawed.
Chum: We are all flawed. That's why I said "a less flawed child" and not "a normal child" or "a perfect child."
I am 37 years old and I grew up with a younger brother with Down syndrome. He is relatively high functioning--he has learned to read and with minimal help has had simple jobs in the community.
My brother Dave grew up with us pretty much like another sibling; he had limitations, but because I had lived with him my entire childhood, I saw him first as Dave, my brother, later I could see him as a disabled adult.
Raising a Down's child who is relatively high functioning would be much easier than attempting to raise a low-functioning one. My brother expresses emotions and you can do a lot of activities with him, he likes going to the movies, etc. Low-functioning individuals (no verbal skills, incontinent, etc.) are more difficult to relate to emotionally, and take much more patience and work--their entire lives.
Our family was fortunate that in 1970, when my brother was born, the doctor urged my parents to take him home and love him and raise him like a "normal" child.
Those are difficult questions Ann has asked, especially for parents who have no experience with an individual with Down syndrome and w/o knowing if your child is going to be low-, mid- or high-functioning.
I don't have answers to those questions, but wanted to share my related thoughts on this interesting thread.
Last year gifted children were all the rage; this year it's Down Syndrome. Plus ca change....
Sorry--dark humor.
Both of my kids have more than the usual flaws. My oldest lives with Cystic Fibrosis, the youngest Aspergers. It's hard on the parents. It's also very rewarding when you see your CF kid head off to college healthy as a horse and your Aspergers kid come out of her shell and start to become a real person.
My wife didn't have amnio's either time. Not that we would have done anything but we were pretty young and didn't fear anything. My CF kid wasn't diagnosed till he was 6. The other was 4. Both have turned into great people and the world needs people like them.
As far as kids with Downs - my CF kid is a sophmore majoring in elementary ed and this semester is teacher aiding in a small special needs school. He's been spending alot of time with Downs kids and enjoying every second. I think he's starting to understand what we see when dealing with him and his sister. It's not always easy but it's always worth it.
Down's parents manage the same as all parents
By loving their kids.
That a small percentage have very nasty, negative temperments?
That's odd. I find that a fair sized percentage of non-DS people I run into have nasty, negative temperments.
I'll admit that I was prejudiced against people with DS from bad childhood experiences with a DS child (from a family who were friends with my grandmother) who tended to torture small animals, hit other kids when his parents weren't looking and tried to smother my grandmother with a pillow in her sleep once when she was visiting the family (this wasn't play he was mad at her at the time). Many years later I learned that this wasn't the typical kind of DS kid and my prejudice has lessened (not disappeared, my head knows one thing but my gut doesn't always listen to my head). But yes, they are human and some are not as kind and loveable as others.
My concern echoes that of the peson that said the parents you're quoting sound like they're adopting puppies. A DS kid is much easier to deal with than a DS adult who's most likely never going to be completely independent.
Geoduck2 asked what happens to a DS adult when the parents get too old or die.
DS adults live with other family or in state-funded care. In some cases it is an institutional setting on what we might think of as a closed campus. There has also been a movement in the last 15 to 20 years to have DS and other developmentally disabled (DD) adults live in the community in Community Integrated Living Arrangements (CILAs). A typical CILA would be a single-family residential home in the community with 3 to 6 adults and staff as needed.
It would only be an extremely rare case where a DS adult could be completely independent. I have an adult brother with DS and have worked with DD adults in the residential setting and I am not aware of any who are completely independent.
Inspired by PWS' comment:
First, I think that with regard to adults with disabilities such as Down Syndrome, Hillary Clinton's phrase, "it takes a village" is dead on.
Such adults can often live out in the community, but the operant word and attitude is not so much independence vs. dependence, but rather "interdependence." Key to this is an approach that provides for not just appropriate housing and support, but from a transitional standpoint. The idea, in rough outlines, is a continuum of settings and support: for example, group homes with constant in-house staff; blocks of assisted living apartments, with an on-site office staffed during the day-time and beeper coverage during off hours; and, finally, regular and accessible support and monitoring for those who "transist," or mainstream, into the larger community in a more or less "independent" fashion. An individual might enter "the continuum" and any of the three points and either stay there or "progress."
Can you tell that I have worked in such a program, seen its fruits, and to this day am absolutely passionate on the topic? (Positions: group home counselor; in-home counselor and supervisor--for people mainstreamed into the community, with support; development assistant--fundraising and community awareness/education etc. I've also worked as a private assistant/aid. I share this only to assure that I'm not talking through my hat or just in terms of airy-fairy theory.)
I am of the opinion that people with disabilities can and should be encouraged to live as independently as possible, and this means that if it's not absolutely necessary that they live with their birth families, they should indeed NOT do so. Part of the reason--but only part--is the reality to which Geoduck and others allude: family caregivers, typically parents, age, ail and die. It's very difficult at that point to transist the person "left behind" out of complete dependence on a family unit, even if at an earlier stage there was great potential to achieve at least a degree of independence if nurtured and supported over (often a great deal of) time.
I won't go into the other reasons at length since this is Ann's blog, but suffice it to say we tend to infantilize, de-individualize, and, to a degree, de-humanize people with disabilities. (Notice how we refer grown offspring of people with disabilities as "the adult children" of? And not just those with Down Syndrome, either, believe you me.) That "we" often includes the most loving and well-intentioned of people--including families. In that sense, we add "handicaps" to people already living with disabilities.
I'll stop now; sorry that this turned out to be a not-so-pithy comment.
Btw, I would NOT abort due to Down Syndrome, and I would NOT consider myself heroic or special for not doing so.
As a 45-year-old who could still become pregnant, this is not an entirely theoretical thought.
" "People with Down syndrome are pure in heart and spirit.""
LoLoL. My parents' very good friends have a son with Down Syndrome. At puberty he told his parents that he was very aware that most people his age were having sex and that he wanted to have sex as well. He demanded his parents to make this possible. And he made these demands at the most inoppurtune times, like parties and public trips.
He is currently pestering his parents to get him a mail-order bride.
'He is currently pestering his parents to get him a mail-order bride.'
He's attempting to solve a personal problem the same way thousands of men do and for which from his perspective, there is a practical solution. Nothing wrong with that.
That makes these demands at inappropriate times is a reflection of his upbringing. Many parents of disabled offspring find it difficult to correct socially unacceptable behavior as it means saying no. No different than parents with non-disabled kids who don't set guidelines this way.
I did hear of a situation where parents considered assisting their son obtain a mail order bride. She was aware of the circumstances ahead of time and agreed to stay married for a period of time after which she would leave the marriage permanently. I don't know if it ever actually occured.
I apparently, in trying to be broad-brush, was not clear.
The point of the agency for which I worked, and, well, the "point of my point" was that many adult with disabilities do NOT have to be institutionalized.
I didn't work for a facility. I worked for a program. All three of the referenced continuum points involved the clients living within the larger community. Not separated. Participating in the larger world. That's the point.
(Obviously, there is a need for institutions as well, but that's a different topic.)
Sorry, Ann, to continue my OT, but I do feel I had to dip back in to try to clarify, just a bit.
I appreciated reading this blog, I am a mom of 5 children, my youngest has DS. My husband and I are still in many ways adjusting to the news. It is very much like a death of a dream that I would not wish on any other parent,but I cant help but feel blessed to know my baby when I look into her beautiful blue eyes. She is to undergo heart surgery in a couple of weeks, to correct a hole in her heart. We opted to not have any testing,prior to her birth, our faith stands in the statement Whatever happens this is our child. I love her greatly, and I feel overwhelmed by all the hubub of well meaning folks, who want to tell me some cute story about some DS kid they know. I agree with the person who said, people, children with DS are people, children. Love them, they have a capacity to enrich our lives, allow it. I am not certain of all my daughter will have to offer, but whatever it is I will nurture it, and cultivate her potential to be a loving, productive person.
Nikki: Thanks for posting. It's hard to have the amnio and be put in the position of having to decide. I really feel for you.
I have a ten year old daughter with Down's Syndrome and finding out during my fourth month that I was to have a baby with Down's Syndrome was confusing and I didn't know what to expect. I was scared that my child wouldn't live long and if she did, I was frightened of caring for a severely disabled child as I knew NOTHING of raising a child with Down's Syndrome and hardly even understood what it is. I went to genetic counseling, did research and was offered the opportunity to abort and yes, almost even encouraged to do so! as it was mentioned several times during my pregnancy! but, I had all the tests done to insure that the baby I carried would at least live for awhile (I was afraid that I would have a child who would die very young and I KNEW I couldn't bear that!) but, once I was assured by several medical tests that she was otherwise ( a heart murmur) quite healthy, I knew in my heart that I wanted to have her and it was the best choice of my life! She is beautiful with long eye lashes, brown hair, blue eyes and dimples with a smile that lights up the room! She is sweet, loving and absolutely wonderful and I wouldn't trade her for any child in the world!
On the street, I've had people say (unsolicited, by the way!) to me how wonderful I was, like I was SO burdened to have my "Gracie", which SO amazes me and then, my personal favorite of how "lucky" she is to have ME for a Mom! Yeah, right! I'M the lucky one I manage to reply. They have no clue!
My niece has three "typical" children who write on the walls, hit each other on the head with hard toys, use nasty language and are hard pressed to help her or themselves to do anything! My Gracie, on the other hand, is helpful, affectionate and wouldn't dream of hitting anyone. She never curses or insults. And, they aren't the only children that are "typical" I've seen who behave in this manner. I've seen many other "typical" children and what their parents go through with them.
I'd say I'm the lucky one for sure. Like I said, I'll take my Gracie anyday. And, she is a fabulous conversationalist. She loves music and animals and anything that is young and/or babies. She loves nurturing.
Yes, I'm the lucky one, for sure.
Thanks for posting, deeltho. You sound like a great mother.
I really don't know. Am I such a bad person that I would be devastated if I had a child with such a condition?
My Auntie has Down syndrome, and I know how difficult it can get when interacting with someone in this condition on a daily basis. I am a practicing Buddhist, and thus maintain a high amount of respect for all life... but perhaps it is the selfish part of me that sees my first child as someone I can teach about the world, and introduce to many things.
I don't doubt that someone with down syndrome would not be able to enjoy life, but in the same way as someone who's "normal"? (I dislike using that term)
I just don't know what I'd do, and I know the decision is not mine alone but would be the mothers too. I would never ask her to abort should she not want to... Dealing with my Auntie is difficult enough for me. Having a child with downs would change everything, and while I'm sure the child could be loved and happy, the effect his or hers condition would have on the parents is huge.
What humans love to feel, in my view often is acceptance, a sense of identity, that we fit into the world.
I want to teach my child music and art, I want to educate him or her, and watch them learn and experience the world. Is it my prejudice that thinks a child with this condition couldn't do such things? Or is it the social climate that forbids me from wanting these things, from wanting a regular child.
One thing is for certain. An abortion would leave scars on myself and my partner that would last forever.
I would feel blessed if God trusted me enough to offer a child with Down Syndrome to my care. I think that the only reason that is a "handicap" is because unfortunately there are many people (many who have commented on this blog) who pick on them. They are not animals, they are humans. They have amazing minds that are capable of molding. If you truly believe that they can be so mean and nasty, then you will have to look at who is raising them. I don't believe that problems of adults should stem back to childhood, but problems during childhood do.
As far as aborting the child because he or she does not fit your standards of "normal", there are many people who would happily provide a safe and healthy environment where they can reach their full potential. Abortion is murder and murder is wrong.
As far as being in your mid forties and purposely entering this child into a life where Down Syndrome is his only fate, to me that is wrong too. I believe that it is nearly as selfish as having an abortion.
I found this blog while searching for information on the CVS test I am being asked to decide whether to purchase in the next few weeks.
I am 7 weeks pregnant, it is my very first child, and I am 38.
When I first heard of the test, my doctor confidently stated she, her sister, others, had easily undertaken the invasive test, and that although the chances of miscarriage was higher than the amnio test, it was 99 percent accurate at detecting chromosomal abnormalities.
As I have been searching here for more info, I quickly realized by doing this test, I could lose my baby.. And for what?
To decide to abort if she is different? If she will need more help than I assumed I would have to provide?
The thing is, the ugliness, the sheer ugliness of some of the comments of "normal" "healthy" "non-chromosone challenged" persons who have responded are flabbergasting and more scary to me than raising a handicapped child. Ugh!
Children, beautiful, alive children that are individuals, that is what people with DS start as-like everyone else.
Whether they become loving or kind depends on parents- just like any other child.
Obviously, the parents of the cruel commentators above didn't raise very kind or loving people.
This blog helped me decide- I don't want any part of this testing business.
I saw a heartbeat today inside me that was not mine. I do not possess the right to decide the continuance of that heart- I can feel that truth in me. I don't own that heart, it's not mine.
This child in me is a gift, a really mind boggling, life changing gift to love and protect.
I'm he or she's chosen keeper, no matter what label(Healthy - Unhealthy) this world places on his/her being when they arrive.
Being a parent is being a parent- you love, you protect, you share, and you are in your child's corner, No Matter What.
That's the Whole Damn Point.
Thank You for this blog. It really gave me a lot to think about!
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