Happily Ever After: Downs Syndrome: one parents true story
In , children with Down syndrome were expected to survive to age nine. With the discovery of antibiotics, the average survival age increased to 19 or More and more Americans are interacting with individuals with Down syndrome, increasing the need for widespread public education and acceptance. Approximately one in every babies in the United States is born with Down syndrome, or around 6, births per year. TRUTH: Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children.
However, the likelihood of having a child with Down syndrome increases with the age of the mother, especially after age TRUTH: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.
This is not indicative of the many strengths and talents that each individual possesses. Be considerate of the extra time it might take a person who has a disability to get things done or said. TRUTH: Though people with Down syndrome are at an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, and thyroid conditions, advances in health care and treatment of these conditions have allowed for most individuals with Down syndrome to lead healthy lives.
TRUTH: Though we know that an extra full or partial copy of chromosome 21 causes the characteristics of Down syndrome, researchers are making great strides in identifying how individual genes on chromosome 21 affect a person with Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.
The current trend in education is for full inclusion in social and educational settings. Sometimes students with Down syndrome are included in specific courses, while in other situations students are fully included in the typical classroom for all subjects. Increasingly, individuals with Down syndrome graduate from high school with diplomas, and participate in postsecondary academic and college programs.
They are included in the typical education system and take part in sports, music, art programs and any other activities in the community. People with Down syndrome are valued members of their families and communities, and make meaningful contributions to society. They experience the full range of emotions. They respond to positive expressions of friendship and are hurt and upset by inconsiderate behavior. They enjoy activities and companionship with other adults, and have similar needs and feelings as their typical peers.
Some choose to date, maintain ongoing relationships and marry. TRUTH: Businesses employ adults with Down syndrome for a variety of positions — in banks, corporations, hotels, hospitals, nursing homes, offices and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and the computer industry, to name a few. Like anybody else, people with Down syndrome want to have a job where their work will be valued.
Using this word is hurtful and suggests that people with disabilities are not competent.
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These downloadable versions of the Preferred Language Guide are available to print and distribute:. Answer: There are trillions of cells in the human body. They are so tiny you can only see them through a microscope. Inside these tiny cells are even tinier parts called chromosomes. Most people have 46 chromosomes in each of their cells. Down syndrome affects people from all around the world, and both boys and girls can be born with it. Approximately one in babies born in the United States has Down syndrome. Answer: Yes!
When you get to know someone with Down syndrome, you will find that they have unique personalities and interests, just like everyone else! If they want to, they can be on sports teams, make art, play instruments and join clubs at school. They want to have fun and make new friends, like all kids do. They may need extra time to do their work, but they can learn the same skills as their classmates.
Answer: No! People with Down syndrome have feelings. Just like everybody else, they can feel hurt and upset by someone who is mean to them. This example and experience gives us fuel to come back home, roll up our sleeves and get to work. What is Down Syndrome? How Common is Down Syndrome? When Was Down Syndrome Discovered? Thank you for sharing your story with us. Your son is beautiful. I admit, I know hardly anything about Down syndrome at all.
This was a wonderful, educational story. Thank-you for sharing! I am still appalled that a school had Max in a corner, I am so glad you found a better school for him. This site uses Akismet to reduce spam. Learn how your comment data is processed. Start here! Home Start Here About sponsor Contact. Tell us a bit about yourself. I teach classes online, have a workshop in my home, and have celebrity and high profile clients who need creative portraits for their PR, marketing, book, launches, etc. Down syndrome occurs when an individual has three rather than two, copies of the 21st chromosome.
This additional genetic material alters the course of development and causes some specific characteristics associated with Down syndrome. I never really wanted to be a parent until I decided at age 39 to see what the universe thought of the idea for me. I actively pursued it after I got married. I found out Max had Down syndrome about 20 minutes after he was born. The Pediatrician on staff at the hospital told us he had some characteristics of Ds and needed to do a blood test to confirm it. I was never around anyone with Ds growing up.
All of my beliefs were based on our cultures false perceptions about it. Luckily, we found other parents soon after his birth who helped us understand what it was really like, what to expect, what to read, where to go. This helped me feel less alone and more empowered. We all have strengths and weaknesses. I actually very much relate to him and his particular way of being in the world.
He has other friends with Ds that are really different than he is. If I were to generalize not my favorite thing to do I notice that people with Down syndrome learn differently than the conventional way we learn in school with words only. My son learns similarly to the way I learn which is very visual and physical. He needs to see it, say it, sing it, dance it, do it, in order for it to sink it. A lot of repetition.
Most people with Ds have some sort of delay compared to a typically developing child who has a chart of milestones to reach by certain ages. We basically toss out that chart and have our own with Max based on his muscle tone. That means the strength he has inherently when he is born. Even the muscles of the mouth. We take it for granted that we hold our heads up, sit up, stand, walk, talk, use a spoon, have conversations with others.
But for Max and most people with Ds, everything is extremely epic when they achieve it. Max was born strong, but his muscle tone challenge is mostly in his mouth so his speech is very delayed. He has speech therapy daily at school and twice a month outside of school with another specialist. Everything I had heard about abortion clinics was you would have a sonogram to confirm the pregnancy, then you would meet with a counselor to make sure this is the choice you want to make.
When my appointment came, I had a sonogram and was taken into the doctors office. He asked why I was there and signed the paperwork. No counseling. I was taken back to a small room with about ten other women, all in medical gowns, while a movie played to distract us. I waited in that room for over an hour before it was my turn. I still regret it to this day. A woman has to do what is right for her and no one else. I was doing an internship after graduate school when I met a young engineer through a personal ad. We dated briefly and I found out I was pregnant after having sex just once.
But at that time I had no job in sight, no money, and no family or other support system. He was very opposed to the abortion, since he was Catholic, but he did end up paying for it.source
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Afterwards he never spoke to me again, except to tell me that HE was torn up inside. In the meantime, I had to return for a D and C because I had heavy bleeding. He disappeared from my life, went on to become a successful professor of engineering, married and had two sons. I went on with my life, made an acceptable career, had two marriages, but never got pregnant again.
I wanted to let your new readers know that I am among the women who have had abortions after 20 weeks. Because brains mostly develop in the third trimester, so does the hydrocephalus that took our sons. No, despite many kinds of testing, we do not have a known gene mutation to test for by CVS at ten weeks. Both sons had slightly large between two and three standard deviations up from average, well within the three SD medical range ventricles at 20 weeks.
But we checked again three weeks later and the ventricles had grown rapidly, the existing beautiful brain being obliterated by fluid. These bans or, at our hospital, just the fear of public opinion , with no tie to our medical situation mean that we have to carefully plan out the ultrasounds: 17 weeks, 20 weeks, 23 weeks.
Who could think of the different cruel difficulties, besides the people they happen to? A reader shifts our debate over sex-selective abortion into this broader series on personal abortion stories:. Removing the ability for the doctor and patient to converse freely is simply punitive to families already in a difficult situation. At the outset, I ask that you please withhold my name because only a few friends and family members know this story.
I have never had to consider having an abortion because of my baby having a Down Syndrome diagnosis, but my husband and I did face this decision a couple of years ago during our week ultrasound when our baby was diagnosed with something called hypoplastic left heart syndrome. This is a heart defect where the left side of the heart is severely underdeveloped. Up until about 30 years ago, this was a death sentence for a baby. Babies with this condition generally died within a few days of being born. These surgeries are just a stop-gap, though. Your baby still needs to be on the heart transplant list.
Moreover, there is very little data on the quality of life of children with this condition, and many of these children have other developmental problems, including intellectual disabilities. HLHS is not Down Syndrome, of course, but it is a syndrome where your child could have a decent life provided there is extensive intervention to make it so.
In my case, though, our baby had other heart defects in addition to HLHS that would have necessitated surgery while she was in utero in order for her to even qualify for these HLHS surgeries. After shedding many tears over this very-much-wanted baby, we decided to end the pregnancy. We have another child, and we would have had to spend most of our time in a hospital once the new baby was born, which would have short-changed him significantly.
We both work and make decent money, but something like this could have bankrupted us and probably would have led to at least one of us losing our jobs because of how time-consuming this process would have been. Our medical insurance is good but probably not that good. Most importantly, though, we just could not foresee this child having a decent quality of life or living very long. This is the most gut-wrenching decision I have ever made in my life, but it was the right decision for my family and we have no regrets. I would like to think that I would keep a baby who had a Down Syndrome diagnosis because I know they can have a decent quality of life.
However, given how difficult it is to raise such a child, I cannot begrudge a parent for making the decision not to do it. And now here is where I get on my soapbox about abortion. Becoming a mother and in particular, going through this experience of being pregnant with a baby who had congenital defects, has made me ardently pro-choice.
Being a parent is wonderful, but it is also expensive, time-consuming, and physically and emotionally draining. If you do not have the financial or emotional resources to handle it, then you should not be forced into it.
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That is especially true for children with severe congenital defects. Our country is not very kind to families, and we have one political party where many members of it want to turn our country into some kind of libertarian economic paradise that offers even less government support for families than we currently have. This same party is also hell-bent on making it impossible for women to have safe abortions. You cannot have it both ways. If you want that libertarian economic paradise where it is every man for himself, then you better have abortion on demand.
If you want to end access to safe, legal abortion, then you better offer a huge panoply of government programs that make it easier to raise children. Nine years ago today, in a narrow decision, the U. Thank you for asking for stories. I have waited a long time to tell mine. If you choose to use it, please do not use my name. I was 31, happily married, and pregnant with a child that was both wanted and planned. We had gone in for a routine ultrasound at The tech was pretty quiet during the whole thing and told us to wait in the room when she was done. The normally upbeat, high-energy doctor was somber when he entered the room and began to tell us about the baby whose crib we had just brought home.
I was thinking it would still be OK, and we would love and raise a special-needs child. Not comprehending what was happening, I called the university research hospital the doctor referred me to. They said they could see me in two weeks. He said that would not work, so he personally called the hospital and told them they needed to see me right away. My doctor knew, although I did not, was that we needed to know quickly what we were dealing with because I could not get an abortion in my home state beyond 20 weeks. Abortion had not yet entered my mind.
The second ultrasound was going to be much clearer. The doctor performing it asked if I wanted to know what he was seeing as he did it. I said I did. The geneticist I saw right after was straight out of horror movie. Because of how far along I was, and that it was already Thursday evening, he said I would need to decide that day if I wanted an abortion because I would need to do it the next day or they would not be able to do it. I was too shocked and stunned to even burst into tears. Monday came. If I did not, the baby could die in utero at any time, or I might carry to term.
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He said I still had a little more time to decide to end the pregnancy, but not much. What do you say? Every minute of the day, I thought about my baby. I began to think about what if I were to go full term and he was born alive. By an odd twist of fate, my boss at the time had had a very similar situation five years earlier.
She did go full term and her daughter was born alive. She spent four months carrying a baby she knew would die within hours of being born. But life was not one of my choices. It may be a clear, rational decision that she is sure of, but that does not make it easy. The result is the same. I was branded from the moment I expressed the thought of having one, and we did not have a child to raise.
We named him and recognized his death as we would have any child. I was in college struggling to finish my BA while working full time at a very active job. I had insurance through the state and lived in a progressive area and had made use of Planned Parenthood for basic contraception and medical before with much gratitude. I was in a monogamous relationship with an under-employed man. My nearest relative was miles away. I got knocked up. Finances were tight and Toyota was gearing up to repossess my car.
I was tired. I agonized … for about one minute total. I loved being a mother and was still am good at it, though it did not come naturally. My partner was willing to be a father but nowhere near excited to do so given the circumstances. I knew before I took the pregnancy test that it would be positive, and that was a negative for all involved.
My daughter was adjusting to her dad being out of the picture he moved on from our marriage with a frightening, violent, drug-addicted woman. I looked into abortion options. I had no credit card or savings, no one to borrow from. I got on a list for assistance. The wait was excruciating, but I firmly knew that a pregnancy, let alone another child, would break us, no matter how much love I could provide.
A few weeks later, I woke up to terrible cramping. I called my regular doctor who advised I come in right away. They did an ultrasound, verified the strong heartbeat, and pointedly congratulated me on a being 10 weeks pregnant. Later that day, my daughter and I visited a friend who had a baby of her own. She observed that I had the skills as a parent and encouraged me to carry on with the pregnancy. I almost agreed. Hello mind-fuckery, serendipity, whatever. It was a terrible, awful relief. A year later I had finished school and started a professional career with real grown up wages and benefits.
My relationship and daughter were stable and healthy. A month after that, I got pregnant again. My son is six now.
We are strong and loving and healthy, even when things are hard. Timing is everything. I am infinitely more grateful, however, that I had the right to decide at all. I also have two live and healthy children. Ask any woman who has lost a wanted pregnancy: A miscarriage is an absolutely agonizing experience. Most women strongly identify their lost little ball of cells as a baby, not some impersonal collection of DNA. To watch your little one slip away before you even knew him or her is one of the most heartbreaking and isolating experiences for a woman.
She should have asked me. I do not feel that way at all about my early-term miscarriage. Certainly I do not ever think about the little ball of cells that failed to replicate properly as a lost child. It was a missed opportunity, and those happen in life.
It makes me a bit angry when I hear women compare those lost early-term pregnancies that are so common to losing a baby. Experiencing two live births and the miscarriage in between clarified that for me. Again, an early-term miscarriage is sad for a little while because your hopes are dashed, but ultimately it is no big deal for myself and for many women.
At that point, you are right to hope and to love. That loss is real—because so was the baby. But those are not usually abortion stories. When they are abortion stories, they are heartbreaking. But they are not mine to tell. Do you have a miscarriage experience to tell, one from a wanted pregnancy? Email us at hello theatlantic.
Thank you for posting my perspective. I really appreciate that you took the time to post a link to the Miscarriage Taboo article. I suspect your choice to link to an article acknowledging the serious impact it can have for those of us who were more attached to the pregnancy might really help some unknown reader. I got pregnant for the first time at 19 by a man 12 years my senior.
I wanted an abortion, but my parents found out and made me have and keep my son to teach me a lesson about being sexually active outside of marriage. Fast forward 10 years and my son and I are living far from my family. I had a college degree, a good paying but stressful job, and I was newly divorced. I had moved to a new city several states away and had taken up with my high school sweetheart who, coincidentally was my first sexual experience and we were having sex all of the time.
Just like in high school. He sheepishly confessed that he was married and that his wife was pregnant too. While I knew that he had two other children with two different women, his being married was a shock to me. I called a local clinic and made an appointment. There were protestors outside, and one white woman grabbed me and told me that I was going to hell. I told her to get the fuck out of my face and went inside. The waiting period had not been in effect yet, but they did make you look at a sonogram of your fetus.
I felt nothing. The entire appointment took an hour. The procedure itself took about 20 minutes. My friend drove me home and put me to bed. He slept on my couch and checked on me. My son stayed with a friend from school. I never spoke to or saw my high school sweetheart ever again. I hate him. When I was 21, I was dating a great gal and single mother, who was I was blown away by how much my mom took to her two-year-old son yes, that made her 16 when she had him.
My mom loved to watch him when we went on dates and I admired what a good mom she was. My parents were older, my mom in her mids and my dad in his late 70s. I started pressuring her to have a child with me. I even asked her to marry me. I kept coming up with excuses on when would finally be a good time to get married, but I did break her down on getting pregnant. When it finally happened, when it was real and we had a pregnancy test to confirm everything, I freaked out.
It was all bad, I was terrible. Then I told her she had to have an abortion. At that point she was just confused and sick of my change in personality. I paid for the abortion.