As the father of a little girl, I experienced how excited I am when my baby is healthy. During the time of pregnancy, most couples have a long as well as a wonderful expectation. They cannot wait to see their child. But the wonderful expectation will turn into misery when a couple knows their child is not healthy, especially if the child has Down syndrome. Living in a poor country that does not have the technology to diagnose Down syndrome during pregnancy, the couple just discovers their child has Down syndrome after the child is born, thus, they have to take care of that child. However, living in technologically advanced country such as the United States, the parents know whether their child is healthy or not during the time of pregnancy.
As a M.Div student who will become a pastor, I really don’t have the answer yet if a couple came to me, as a spiritual leader and asked for advice whether to keep the baby or not after the mother took a karyotype test (Amniocentesis) and know surely that their child has Down syndrome, and the doctor prefer to take the baby out. There are two options:
First, if I had told them to take the baby out, I would have become the person who has kept the law (commandments) but encouraged people to violate the law.
Second, if I tell them to keep the baby, I would feel very sorry every time I saw them in the church. The child can not play or study in the Sunday school like other children. The parents surely would have a difficult time and challenge to raise that child. The case is a little easier if they are living in a country such as the United States, where there is good medical cares and social services. But the case will more difficult if they are living in a country that does not have good medical cares and social services, such as Vietnam.
Some spiritual people may say we pray and God will heal that child. I believe God still does miracles today. But what if God does not heal that child?
The case will become more complicated if it happens to me. I also face two options:
First, if I had taken the baby out, I would have become the person who has kept the law (commandments) but violated the law.
Second, if I keep the baby, I will have a hard time to serve the Vietnamese people who have been influenced by Buddhism about “Cause and effect.” It means that either I or my child has done something bad in the life before, now I and mine have to reap the bad things in this life. Even though I know that is not right. In the Bible, Jesus also encountered that question, in John 9:1-3, “As he walked along, he saw a man blind from birth. His disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’ Jesus answered, "Neither this man nor his parents sinned; he was born blind so that God’s works might be revealed in him.” In that case, God’s works might be revealed in him by opening his eyes. But in my situation, how can God’s works be revealed in me and Down syndrome child?
The Bible states, “Sons are indeed a heritage from the Lord, the fruit of the womb a reward.” (Psalms 127:3). Having a Down syndrome child is a reward for me when I serve God? I also have a hard time to encourage people to serve God.
I hope by your responses, I will find an answer.
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Hieu,
ReplyDeleteI can only imagine how challenging this particular issue is within a country like Vietnam. The essential question here is whether or not all individuals, regardless of their disabilities, should be allowed basic rights and dignity. Certainly through scripture one could say that they do. And it appears as if in the United States we are legally moving more in the direction toward protecting the rights of those with disabilities. The hope and expectation is that these laws alter the perceptions of how we treat individuals with disabilities such as Downs Syndrome.
It seems to me that the issue of offering pastoral counsel in regard to how parents should respond to an “abnormal” amniocentesis is not only a spiritual/moral issue, but also a human rights issue. Yes, for many Christians terminating a pregnancy for any reason is a violation of the Law, but to take it a step further, terminating a pregnancy due to a potential disability is to say that a person with a disability is “less than” other human beings. If we are to truly accept people with disabilities, either legally or spiritually, perhaps it starts with when a child is in the womb. Should we not counsel all believers on accepting and embracing all forms of life, whether they look and act like we do or not?
It looks to me like you have both a spiritual and civil rights issue here. My thought would be to embrace your Christian truth (the Law), and run with it.
As an American I can only offer a perspective which is informed by that cultural milieu. I apologize if this does not prove to be a useful perspective.
ReplyDeleteI think much can be learned about a society by the way "least" of its members are treated. In a society where we value the strong and confident and view physical ailments as a weakness and burden, we often fail to appreciate the insights of people outside the "norm".
I would ask whether we can be fully human if we ignore certain aspects of the range of human experience? Shouldn't we equally value those who have alternative forms of knowing?
Well we recently witnessed on the Jay Leno Show how we as a society knowingly or unknowingly step boundaries or are oblivious to the challenges that individuals with disabilities in the society face. I admire President Barak Obama's leadership and wholeheartedly believe there was no malicious intent behind the comment he made about the Special Olympics team. It just reminds us how far behind we are in caring for individuals or respecting individuals whom God has tested in a very strong way.
ReplyDeleteI disagree with you on termination of pregnancy. I think it should be a choice afforded to the parents, if they very well know it would be emotionally draining for them or they do not have resources to care for a disabled child, it is better they do not bring a life into this world and not be able to care for it. I and my wife had to make that decision where we were asked to do amniocentesis, but we refused it. For us it was our child and we were going to accept it as a gift from God. By the grace of God now I am a father of a 10 month old healthy baby boy.
I agree with you Steve we are nobody to decide which creation of God is better than the other. Every living or non living being adds value to this society. God has a purpose for its creation in its shape or form.
As a New Testament professor at a Christian university, a part-time church staff member, a former pastor, and the father of a child with Down syndrome, I am compelled to respond to your blog. Your assessment of the situation is not a fair representation of the reality of having a child with Down syndrome. We discovered that Micah has Ds when he was born, but we would never characterize that experience as "misery." We were and are concerned for his welfare; you may be surprised to know that he is growing up to be a healthy, inquisitive, humorous, loving, intelligent (at age 4 he already recognizes the alphabet and can find his way through, around, or over almost any obstacle) boy. Our concern for Micah's welfare is, in fact, not a concern about him direcly but a concern for how he will cope in a world where he is viewed as an object of mockery or pity, but not as the precious human being that he is.
ReplyDeleteWhen people see Micah at church (or elsewhere) the most common reaction we get is "he's so cute." If anyone feels "very sorry" for us, they are alone in that feeling; we do not feel at all sorry for ourselves. Micah is a blessing who we cherish.
You wrote that a child with Ds cannot "play or study in the Sunday school like other children." I assure you that Micah plays quite well on his own and with other children. His ability to speak is delayed (though he can say "Get up Daddy" at 6AM on Saturday mornings!)but he learns and responds to what he is taught. His presence in the class is also an opportunity for other children in the class to learn.
You raise a number of theological and ethical issues in you blog; I have neither time nor space to respond to all of them, but let me recast some of those issues. How perfect does a person need to be to be worthy of love? of life? If you say that absolute perfection is necessary, then all of us are unworthy. If you draw the boundary to include some of us but to exclude others, your choice is arbitrary. A second, related question is what shoud we do with those people who are born "normal" but through illness or accident become impaired? How do we decide when a person becomes not worthy of life or love? You commented on "law" in your blog; I would answer my questions with a "legal response" from Jesus himself: "Love your neighbor as yourself" and "Do unto others as you would have them do unto you." If you want to consider such matters further, I can recommed two books: Theology and Down Syndrome, by Amos Yong and Theology, Disability, and the New Genetics, edited by John Swinton and Brian Brock.
If you want to contact me directly you can reach me at wjohnson@etbu.edu.
Warren Johnson, M.Div., Ph.D.
Associate Professor of Religion
Hieu --
ReplyDeleteAs I was about to respond to your posting, I read the comments from Richard, father of Micah. My reflections are similar to his, except that his are from personal experience and mine are from a medical perspective.
In my experience, your expectation that a child with Down Syndrome would not be able to play or go to Sunday School is, for the most part, unfounded, as Richard has so eloquently illustrated. Although some children with Down Syndrome do have serious problems, many live long and productive lives, well integrated into society.
In over 25 years of pediatric practice, I cannot remember one family (and there were many) who had a member with Down Syndrome who did not consider that person to be a joy and a blessing beyond measure, both in their lives and the lives of all who knew them.
You ask "how can God's works be revealed in a Down Syndrome child?" I think that you would find that question answered many times over.
Richard and Patti, you have both said so well, and with personal experiences, what I wished to say.
ReplyDeleteSeth also said something of great value: He said, "Shouldn't we equally value those who have alternative forms of knowing?"
This is a particularly valuable question to me as the mother of a son with High Functioning Autism/Asperger's Syndrome. Ian is not really "disabled" in the classical interpretation of disability; intellectually, he surpasses most of the rest of us. However, his interactions with others is quite different from that of most other children. In school, it is so much easier for the teachers and aids to react to him as if he were an intentionally naughty child rather than to consider that perhaps whatever he has said or done might be coming from his "different" way of thinking about the world.
Before Ian was diagnosed, I was at a loss with his behavior. He got a rather late diagnosis - between third and fourth grade. Since then, there have still been many challenges. However, I have got to say that through Ian's eyes, I have seen the world in a new way many times over.
I believe there is a gift in every special package God sends us; especially the human packages. Ian came with a whole bunch of difficult accessories - persistent repetition of favorite words or catch-phrases, an inability to use an "indoor voice," a low frustration level and clumsiness, to name a few; however, along with all those accessories came the true gift - a sensitive, intelligent child who loves and who almost daily gives me something new to consider about this world I once thought I understood.
I believe that "God's works can be revealed in a Down Syndrome child," in an autistic child, in a physically disabled child or a mentally ill child. These children, and the adults they become, ARE God's works revealed.
I would like to address the inclusion of persons with Down syndrome and other disabilities in congregations.
ReplyDeleteWhen parents have a child with Down syndrome, their immediate reaction is “How will I take care of this child?” “What will his/her life be like?” “How will this affect my other children?” “Where will I find support?” Down Syndrome Associations, like ours, reach out with up-to-date information about the joys and challenges, trainings, and support. Pretty soon, parents realize that having a child with Down syndrome isn’t as tough as they thought it would be. In fact, it can be more rewarding than they imagined possible. They read studies which indicate that siblings of children with Down syndrome are more empathic and caring than siblings of typically-developing children, and that parents of children with Down syndrome have lower divorce rates than the national population. They quickly learn to celebrate and focus on their child’s abilities (which now include sometimes include going to college, driving, living independently, working, and having a very fulfilling life).
When a child with Down syndrome first attends school or church, teachers and volunteers ask the same questions and have the same fears --- until they receive support or get to know the child. Inclusion can be a life-changing and rewarding experience for the volunteers, individuals with Down syndrome, and all members of the congregation.
The Down Syndrome Association of Central Texas has launched an outreach campaign to help congregations become more inclusive and better serve all members.
There are three (3) objectives:
• Education about the abilities and worth of individuals with Down syndrome;
• Inclusion for individuals with Down syndrome in their congregations and religious education programs; and
• Awareness about the prenatal screening and termination rate.
Materials are free to download or reproduce and include a general pamphlet about Down syndrome and quick tips for inclusion; Sample Intake Form; Ministry for New or Expectant Parents; article entitled “Impact of Childhood Disability” by Dr. Ken Moses; a Special Needs Sunday kit (with supporting scripture for Christian churches); and the National Organization on Disability’s “Disability Resource Manual: A Practical Guide for Churches and Church Leaders;” and more. For those who would like more detailed information about teaching children with Down syndrome, you can access our free book “DSACT Educator Packet: Working Together to Educate and Include Individuals with Down Syndrome,” which we co-produced with Austin Independent School District.
Anyone wishing to receive a copy of the materials can send an email to info@dsact.com or call our office at 512-323-0808.
Sincerely,
Lori Tullos Barta, J.D.
President
Down Syndrome Association of Central Texas
Hi, Hieu! I would like to humbly join the chorus of hope on this issue. I am extremely impressed by what our colleagues have all written.
ReplyDeleteWith regard to my own experience, I worked many years ago in a group home for adults with developmental and other disabilities as daily skills trainer. It was one of the most important and fulfilling experiences of my life. The residents were my clients and also my neighbors and friends. They had a wide range of skill levels and all worked Monday through Friday in a recycling center. With assistance, they maintained their own homes and prepared their own meals. One time I fell ill on my shift and was unable to reach any other staff, so my clients took care of me and each other. They all participated in Special Olympics track and bowling tournaments.
(By the way, I also do not believe President Obama made his remark with any malicious intention. However, I have heard that a Special Olympian bowler has challenged the Prez to a match, and I hope the Prez accepts the challenge and that the presidential behind gets kicked in the match.) Some of my clients attended church faithfully every Sunday and two of them eventually married each other. (I attended the wedding which was just great.)
All of this is to lead to saying that this program, called Star of Hope, consisting of the residential and occupational components was started by the residents’ parents. When the residents were children, their parents had banded together to advocate for them to go to school. When graduation time neared, the parents again worked together to found Star of Hope, beginning with the recycling center. The goal was to provide their sons and daughters opportunities to lead the most fulfilling lives possible.
I would encourage you to be God’s man affirming life and hope. If ever faced with the situation you described, I know you will provide support. I would also encourage you to provide information and, though it might be a tall order, advocacy that needed educational and training services be established, starting with the support and service available in the church.
With regard to the Buddhist component in the social milieu, I think there is a time for dialogue and a time for witness. To anyone, Buddhist or otherwise, who says that having a child with a disability is a punishment for wrongs done, I would encourage this simple response: It is not our Christian belief that God sends us “bad” things to punish us and, above all, children with disabilities are not “bad”, but blessings and gifts from God just like all children. Furthermore, they, like all children, are to be viewed and treated with compassion—which I believe is also a Buddhist tenet.
I have little to add to what colleagues have written and felt in the prior postings. However, I am compelled to share my experiences in working with families who parent children with disabilities.
ReplyDeleteWhen I read your posting, Hieu, I fell back on my professional work and how I have responded when parents with this news or other in utero diagnoses have come to me for guidance. The first thing I do is work to provide as safe and respectful space as I can--in other words, an environment for the parents to just react without having to worry about the reactions of others, especially me. I really work on suspending my judgements and holding my thoughts to myself as to what they should or should not do. The next thing I listen for is what they already know and have claimed in their hearts about their baby. I don't take this step as an indicator for what they should or should not do. Rather, I listen to get a sense of their readiness to and willingness to parent any child regardless of strengths or challenges, as well as to explore what this may mean for them and the life of their baby.
Fortunately, I've had the gift of many families being gut level honest with me after they've gone through moments of crisis--they've told me what did and did not help. They've made me a better social worker and minister through the years. Two things that stand out for me from what they've shared:
1) Pause and BREATHE--and just when I think things are moving too slowly in terms of decision making and resolution of the situation, slow down even more.
2) Recognize that whatever I bring to the table, though valuable, pales in comparison to the experience of families and children who have walked the road similar to what the family faces in the future. So, always explore the parents willingness to meet, talk with other people who have parented a child with whatever challenge exists. I've also had families tell me that there's nothing wrong with linking parents with others who have chosen not to parent the child. However, they cautioned me to make sure I link the family with people who've walked all sides: parenting, terminating the pregnancy, and planning for adoption.
I refrain from getting into a discussion about the quality of life, human rights, cultural implications, emotional and physical resources, what capacity does a differently abled person have to enjoy a quality of life and so on. Previous postings have captured many of the aspects of the discussion well. Plus, I really struggle with having such discussion outside of face to face encounters. In these situations, some may call me a chicken, but, I know I will not be the one living these parents' lives or the child's life in the future.
I do offer one experience I had that has never left me: one family I worked with when I worked at a foster care and adoption agency for children with special needs. This couple came to us not to adopt, but to ask for help in deciding next steps. This couple had struggled with infertility for years. Finally, they became pregnant resulting in the birth of their son. Soon after delivery of their child, they discovered that their son had a condition that less than 200 children in the world have. The future prospects for their child did not look good as many of the children became total care by the time they reached adolescence, if they lived that long. The parents did not think they could walk that road and wanted to pursue a plan of adoption for their son. We could have easily started down that path. However, they seemed ambivalent. So, . . . off to the family medical library I went. With the help of nurses at the children's hospital and the local family to family run organization, we found a family in England who had a son, age 13, with the same condition. This family was willing to answer any questions from their perspective and share their experiences in the event the family I was working with wanted to connect. It turns out that due to the rarity of the condition, the parents with whom I was working had given up all hope of talking with any other parents about their son.
They talked for about an hour with the family in England and actually, briefly talked with the youth as well. I learned my lesson very well that day because the power of one family's "life story" did more for them in clarifying their path than anything I or any other professional could have offered. They chose to parent their son despite questioning family members and friends.
I hold fast that in my humanness, I want an answer, a definitive direction when faced with these difficult situations. However, I've learned that probably the greatest offering I can make a family facing tough decisions is to "show-up," be fully present, and hold their pain and joy. In doing so, I can learn how they go about making decisions in their lives and hopefully link them to types of resources and people who can assist.
And, Suzanne really summarized the cultural milieu issue well.
Thanks so much for putting forward this situation, Hien.
It is unfortunate to see, from some personal experiences society loves to marginalize people rather then encourage them and include them as a functional part of society.
ReplyDeleteThank you so much for all your responses. I can not how much I appreciate in your responses. I understand more and find some answers to help for family who is in this situation in my futher ministry. One again, thank you so much.
ReplyDeleteIn my post,I may use too strong word "misery" to express the feeling of the parent who know their child has Down syndrome, instead of unhappy or worry. When I wrote the Down syndrome child can not"play or study in the Sunday school like other children," that was not my expectation, rather that was my observation one of the church in Vietnam and one of the church in USA. I hope these churches will have a good service so that every person including people who have Down syndrome find love in Christian community.
Hieu. Thank you for your thoughtful posting. Your posting allowed me to have a chance to think of Down syndrome. I know that how much difficult this issue are in our community. When I read your posting, I was captured in “Cause and Effect”. In my experience, Korean has been also influenced by Buddhism. So when most Korean people face the tragic events, they think that they made their lives wrong for before they did wrong thing, although they are Christians. Accepting their events with this theory allows people to have a chance to think of and reflect their lives. However, it makes also people have hard time. Sometimes, people are captured in this theory and they cannot overcome the tragic situation. How really bad it is! As you know, the theory of cause and effect is not right. In our circumstance (Korean and Vietnam) ministers need to change this situation for people.
ReplyDeleteFinally, I want to suggest something. If I am you, I will never tell a conclusion to people who are in this situation which you explained above. I will lead them to choose the decision by themselves with the conversation, because making decision is up to their will.
Hieu, I hope I gave you some help.
I think by well informing the parents you will do them a great favor, both spiritually and emotionally. We could prepare them anyway we can. However when it comes to the medical field that’s is not my criteria and I can not comment. Luckily we live in a country that disabled people can get a job and they can get help any way they like. My wife’s boss has a child with down syndrome. He works in a mailing room and he father thinks that he is a blessing. He brought so much happiness to their family. His memory is better than mine. His sense of humor will almost enable you to walk if you stand by him for five minutes. Therefore not every down syndrome baby is completely disabled.
ReplyDeleteBut for us I think just to inform the parents about all these consequences that they have to face should be enough. The rest is up to them if they want to keep the baby or not. After all having babies in these days is considered a choice. You are right, there are a lot of unfamiliar questions that people come up to us and we feel our duty to help them any way we can. And I think that’s the most challenging part of our jobs.
I do not know that I can provide much more insight than the previous posts. I grew up with a DS uncle. He died when I was a young pre-teen however, he had a full and rich life. He loved batman and taking picture with his polaroid camera. In fact it was him who got me into photography. This is not a condition that I think would deem necessary for an abortion as the previous posts clearly demonstrated. But there are some conditions where the life of the child would be filled with suffering and the parents might not have the resources to take care of the child. What about those situations? Is there room within Christian ethics to terminate a pregnancy?
ReplyDelete