Question: Is anyone out there 40 or over that is pregnant with a Downs Syndrome baby and has to decide whether to ride it out or terminate before 20 weeks, I just got the bad news and my husband feels the pregnancy should be terminated but I am having thoughts of guilt, anger, sadness, frustration, you name it, I still have three healthy sons age 19, 14, and 12, please give me your opinion as to what you might do in this scenario, the baby has many things wrong according to the ultrasound! ?
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Answer: I am so sorry and I know you wanted to hear from ones in the same boat and I am not but I was faced with something my afp screening came back with 1/41 chance of trisomy 18 and I was scared to death I am 35yrs old I worried about what I was going to do and I felt that if it turned out that my baby was going to have these horrible problems because trisomy 18 is really bad that I just could not bring a child into the world to watch him/her suffer then die....I however found out mine was a false alarm and there were no problems but I still feel the same way if there are going to major problems and you feel your child is not going to have a quality life why do that to a child and that is what you and your husband have to decide if you think that the child would suffer I am so sorry for you and I wish you the best of luck and will keep you in my prayers please just trust your heart....and you will do what is best for you/baby/and family =
Answer: Sylvie- Did you have an amnio or just the ultrasound? My heart goes out to your family. What a tough decision. I am 45 and pregnant with my 3rd child. I had 2 prior miscarriages so when I became pregnant, I had the amnio at 16 weeks. I was one of the lucky ones. I am having a healthy son. My husband and I previously discussed the possibility of having to make a decision if this baby had problems and we were leaning toward terminating and try again. Children with multiuple disabilities are going to outlive you and your husband leaving them in the care of their other siblings. God Bless you and be at peace with your decision. =
Answer: I am so very sorry for the pain that you and your husband are going through Sylvie. My sister-in-law's sister just went through the same thing. Her and her hubby are 24 and the have a 4 year old, a 1 year old with DS and 2 weeks ago they found out that the child they were expecting also has chromosomal problems including DS. They made the very difficult choice to terminate the pregnancy for the sake of themselves and the 2 children they already have (the Dr told them when their second child was born with DS that it was a fluke and it would not happen again). In this situation there is no wrong or right, just what is best for everyone concerned. Some people have and accept a DS child and say that they get more love and happiness out of that child than they could have believed possible, but the other side of the coin is who will look after the child when the already older parents pass away. You have to do what is right for your family and when you have made the decision you must try to never look back. terminate and live knowing it was the best thiung or keep it and know you are doing the best thing. Only you can search your heart and find the answers. /hugs =
Answer: I have walked in your shoes, Sylvie, and have had to make the decision that you face. My husband and I were on the same page when it came down to deciding, though, and I am greatful for that. We terminated the pregnancy at 19 weeks due to T21 and other things wrong. We felt it best for the baby and our family as a whole. Whatever decision you make, it will affect your life forever. You and your husband have to decide what decision you can live with. It's a tough decision that I wish no one had to face. =
Answer: Hi Sylvie, did you have a CVS or amnio to tell you that the baby for sure has T21? I am 35, (34) when I had the quad screen done that showed my baby had a 1:47 chance of T18, which is horrible. My doctor immediatly set me up for the amnio which came back fine. I will have a healthy little girl. If it had indeed come back positive for chromosome abnormalities my husband and I decided we would terminate too. It is sort of a different senario and to be honest with you I am glad that mine did not come back positive for Downs. With T18 the babies generally die with-in the first days or weeks of life, so for me the decision was much more black and white then yours. But I do have other children too and would it be fair to put that kind of responsibility on them when my husand and I die. It is such a hard, personal decision and one that you need to feel comfortable with. My heart feels for you. Best of luck with what ever you decide.
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Answer: I am 37 yo, I had gone thru that terminating just 2 months ago in my 20 wks. I am lost really lost and long for my son who I had taken a look for just few minutes. I felt guilty but nobody know the consequences if I really bring him to the world. Thus, such decision was made. I had a girl at 9 and a boy at 6 and also had an unplanned pregnancy 4yrs ago but had evacuated it due to foetus no heartbeat. I try this round thinking that my children are big enough and to prove that I can conceive again with healthy one but it didnt turn out well again. I am now thinking of trying again but a bit scared. I saw a website mentioning that taking enough folic acid can reduce downs but my gynae doesnt agree. She too nv heard having 2 ds in a row but she had a patient had 1 T21 n next T18 and nv keep any of them... =
Answer: First, I am sorry and am praying for you. I had a screen positve for trisomy 18 and then an amnio whiched ruled it out and looks like everything is okay. If in your shoes I would have an amniocentesis, and depending on what the ultrasound showed I would seek a support group of mothers with children of downs sydrome before you terminate. This is a decision between you and your husband and no one else. You are helpless regarding your babies physical condition and should not feel guilty if you do decide to terminate. Please understand that your feelings are very valid and give yourself the right to grieve. Explain to your husband that the baby is inside of you and it is very real, and ask him to stand beside the decision you make. You will come to a decision- but give yourself time to grieve first. This will help you cope after you decide what is the best for you and your family. I am praying for you and here if you need any support, please ask - I am here.
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Answer: That happened to me about 6 years ago. I chose to keep the baby and see what happened. The baby died in-utero. Though our daughter is gone, we are not responsible for her passing. I can deal with that, I don't think I could deal with any other path. =
Answer: This just happenend to me. It was terribly hard but we decided to terminate. We just felt it wasn't fair to bring the baby into the world under those circumstances nor would it had been fair to out 7 yr. old son. It is still, however, the most difficult thing we have ever done and are still going through the greiving process. We spead our babies ashes on the beach where my husband proposed to me just this past Wednesday. We told him we loved him and wanted him to be in a better place where he could be free from illness. We hope to be joined w/ him someday.
believe me, I understand the guilt.But not not for a second do I feel like I didn't do what was right by him.
Sylvie, and to anyone else who has gone through this, my heart goes out to you. Let us know how your doing. I'll keep you in my prayers. =
Answer: I am so sorry for your loss that must of been very hard for you to make that choice and my heart goes out to you and your husband my prayers will be with you....I think the way you spread the ashes of your dear little baby boy was very touching and I hope your heart soon heals take care =
Answer: You are very special person that you were chosen to have a baby with challenges. I truly believe you'll regret a decision to terminate. I'm 38 and pregnant with my first, I'm scared but believe if given a child with any problems that, I am better than I give myself credit for that I was given a baby that needs more of me. So many of these tests are wrong that you may have a baby thats not quite as bad as the ultrasound is showing.
You're also in a better position to care for a baby that has special needs, if this happened to one of your boys imagine how hard it would've been to raise a baby and boys at the same time.
Something to think about. =
Answer: Please consider holding your thoughts when it comes to telling someone what they may or may not regret. The painful decision that was made was hard enough without any other hurt being directed there way. Deciding what is best for your family is the only right answer that counts. Support from others is what any one needs in this situation. My heart and prayers goes out to any family that has to face such heartache! =
Answer: to kn you are not chosen to have a sick baby thats so wrong to say why would go want a child like that is defect something gone wrong =
Answer: Are you ladies still around? If so PLEASE post on this thread. =
Answer: I am so sorry to hear the bad news my heart goes out to you , as alot say its in the end up to you , but I am 36 and had the test done as I knew that if it had ds or onther disorder I needed to abort as it wouldn,t be fair to the child or my family to deal with I know some can do it but its not a easy road for baby or family and with lots of struggle health concerns growing to me our choice is let god take care of the baby and dont feel any guilt as what kind of real life does the baby have honestly . But if you are stonge and willing to give the rest of your life up with lots of work money and heartache they can be loving children but I see the ds adults everyday and i just feel so bad for them as children they are cute loving but they are also very tempered and can be adbusive , I thank my lucky stars i live a normal life . All the best to you . =
Answer: I am 39 and had an amnio to rule out any chromosomal problems, which thanks to God, there were none. My husband and I had decided to terminate if the results showed the baby had DS or any other issues.We had worked in a camp for special needs kids in our early 20's and knew many DS kids and they were some of our favorites, sweet, fun and loving. I later worked with some DS adults that had outlived their families and had been in state hospitals for many years.DS kids are often born with severe, life threatening heart defects and other issues. They often die young.Some are very high functioning and can live almost independently,holding down jobs and having apts.,if your community has such programs, and some are more severely afflicted mentally. All of these factors influenced our decision, some people understood and others acted shocked and dismayed when they asked "What will you do if you find out there is something wrong?" No one can make this choice for you and certainly no one should judge you, but be ready, because they will. My heart goes out to you and anyone else in your shoes, I'm sure you are showing and many people know you are expecting now, this all went through my head, among other things, when I had my amnio and waited for results.I'll be praying for you. =
Answer: I must say, as a person who has just gone through this, it is nice to hear from people who feel similarly to myself. Since we terminated our pregnancy we have gone through soooo many emotions. One being guilt. I guess it's just a natural part of the journey through the greiving process. I am happy to say that neither my husband nor I feel any regret in our decision. We truly believe we did the best possible thing we could have for our child and our family.
Thanks to all who have been supportive on this thread. And may you all be successful on your quest for healthy , happy, babies!!! =
Answer: Yes you were right and very stong and I know you child is in heaven thanking you This world is to hard for us to survie these days , god bless you and may you bring a healthy baby into the world . =
Answer: I am so glad you came back! Let me give you a little background. I have found out that I have a 1:87 chance of having a baby with Downs which is pretty high for my age (33). We had an amnio done 2 weeks ago. We still havent received the results due to the holiday I am guessing. This past Monday, I had my regular monthly visit with the ob/gyn, he had some concerns about the baby's heart rate from my visit the month before, so we did another U\S. We both assumed that the irregular heart rate was due to my huge sweet tooth! On Monday we found out that is not the case, it appears the baby has ASD. From what I have read about Down's, this is a common defect of the heart and especially common in Down's babies. I don't believe if I had not read that and mentioned having read it to the doctor he would have told me that he believed the baby had Down's too. I suppose it's some kind of CYA for him since we did not have the results of the amnio. Or he just wanted to wait til he was sure. So even though we do not have the results back from the amnio we are pretty sure that the baby has Down's. My husband and I both agree that I should not carry the baby to term. The ASD looks to be severe and would require hospitalization after birth at the very least, more than likely surgery would be needed. I guess I am telling you ( and the rest of the world this) because I am going through all of the emotions right now. What is making things more complicated for me is that I did not know I was pregnant right away so all of this information has come to me much later in my pregnancy. I am 26 weeks, so my decision to terminate is so much harder especially being familiar with the procedure for this late in pregnancy. I am really just trying to find out all of my options. I know this is the right thing to do, but the method is what I can't get over. I am just a big ball of confusion right now. Your posts do help, I hope that doesn't sound terrible. What I especially liked was the part about spreading the ashes, we hope to go to some of our favorite places in the world and do the same. I was not sure that would be an option after the procedure not knowing, yet, what to expect afterwards. (I haven't spoken to the doctor about that part because it's easier taking this one hurdle at a time.) It has given me great comfort to know that I will be able to do that. Thanks. =
Answer: I am preying for you I cant imagine what you feel as I know its much m,ore heartbreaking for you . But I do believe you are making the right choice a sick child is so heart breaking and unfair no baby deserves to be sick and in pain . thats why we let them go to the better place and not be selfish and keep them here . God bless you and I prey that everything you go though you will feel the comfort of knowing you did theee right thing and may you be blessed with a heathly baby when all is settled here
hugs to you and your family =
Answer: To "Hi B". Boy, do I feel your pain. Just reading your post makes me feel all the emotions I was going throught at that time all over again. My baby was diagnosed w/ atrial and ventricular septal defect. And w/ out even knowing for sure the amnio results, my dr. pretty much said it was probably DS. Two days later, we found out he was right. I was 21 1/2 weeks along when we terminated. Awful....
They gave me a choice of D&E procedure, or induction. I guess I was right on the line of where i still had a choice. And you may only medically terminate here until 24 weeks. I took the D&E route. The down side of it is you cannot hold or spend time w/ the baby after. They pretty much knock you out and when you wake up, it's over. Which is harder to deal w/ in some respects, easier in others. You need to do what is right for you. Spreading his ashes was a traumatic, yet healing experience for us. And it was, I felt, good for my son. I wanted him to realize that this was a life that was lost. One that mattered to us and one that we are hurting over. Not just one day theirs a baby the next day it's gone.
Have you met w/ a genetics councelor yet? They were extremely helpful in our case. And helped us to be at peace w/ our decision given the babies health circumstances. It doesn't make it any easier in those first couple of weeks. You have alot of healing to do. Though, I don't think you ever heal completely.
Please, if their is ANYTHING I can do for you or questions i can answer, do not hesitate to email me personally. Even if you just need someone to talk to. I am sooo sincerely sorry for what you and your family are going through.
Take care.
Beth1ty@msn.com =
Answer: My sister-in-law had our niece three years ago. She was born with DS, and a heart defect that required immediate surgery to repair.
She is a sweet, beautiful girl, and we love her.
I am confused by some of the posts on this thread.
For instance, everyone here seems to be saying that termination "is the right thing to do" because the baby has a heart defect, and DS? (am I reading this wrong?)
I'm a little surprised. I understand the woman who said that Trisomy 18 would result in death of the baby anyway, but for Trisomy 21, it doesn't appear to be so black-and-white.
I am sympathetic to any woman who gets bad news regarding a baby--I'm just a little confused as to the severity of the heart defects, and the "necessity" of termination in this case. =
Answer: I don't think "necessity" is the issue. It's a matter of choice and looking at what is on the plates of the child and family. No, trisomy 21 is not a death sentence as is trisomy 18. However, anyone who is familiar w/ DS children and the issues that face them and their families, understands and does not underestimate the enormous undertaking it is when you have one. The worry, the stress, - emotional, physical, and financial, etc. The care that's involved indefinitely- even after the passing of the parents. This is all ALOT to consider and ultimately... not for everyone. That is why it is a personal and private decision that only the family can make and for others not to judge.
I understand the value and the joy your neice has brought to you and your family. But not everyone in other situations has the means, nor the will to take the same road as your sister-in-law. That is why it is a choice and an extremely difficult one at that. =
Answer: I too am faced with the possibility that the fetus I am currently carrying may have DS (we go on Fri for CVS to find out for sure). I have a cousin who is DS and is now in her 30s. When she was young, she was a sweet & beautiful girl too...as she got older, however, she had medical probs and became violet. Although my aunt & uncle tried their best to show her as much love & understanding as they could, it got to the point that she would beat up my aunt and came close to hurting some of her nieces & nephews - ultimately for everyone's safety they had to make the gut-wrenching decision to put her in a home. It is because of my personal experiences that my husband & I decided before I became pregnant to terminate a pregnancy if testing proved it to be DS. I hope the CVS proves my initial screening to be a "false positive" because I really want to be a mom, but, if it does show the fetus to be DS I feel that the best decision for everyone involved would be to terminate the pregnancy and I would not want someone to judge me in a negative way for a very difficult, personal decision. =
Answer: are you saying that people with DS might become violent later in life, and this is a good reason to terminate?
I was not trying to be "judgmental".
All I am saying is that this is a CHOICE: meaning you have more than ONE option.
You all seem to be saying that termination is the only "humane" option. I get the feeling that you think people with DS are nothing but a burden and are not worthy of life.
If someone ever said to my face that they think my sister-in-law should have terminated my niece because she is not perfect, I would have to knock that person's teeth out.
I fully understand the difficulties and hardships involved with having a dependent who is handicapped.
I was just trying to point out that choosing to give birth to a baby with DS is not an "inhumane" choice, nor is it "unfair" to other family members.
That is all. Please do not insinuate that my niece might be "cute" now, but later in life she will turn into a beast and my brother and sister-in-law will be sorry they had her.
That may be your experience, but it is not inevitable. =
Answer: Bmom, I was not trying to be offensive to you. I was simply stating that, given my experience with DS (& the fact that I had a brother who died due to complications with a rarer form of Trisomy), I would not want to continue a pregnancy that was proved to be DS (or any other form of trisomy). This is a personal choice. I respect your brother & sister-in-law for making the choice they did. However, I, & several others who have posted on this thread, have decided to make a different choice. It is true that not all DS children have the problems my cousin has. However, I have seen enough to know that I personally would not be able go through what my aunt & uncle (& my parents & family) have gone through. I’m sure your brother & sister-in-law have done plenty of research to prepare them for what may or may not happen in the future…I wish them all the best. =
Answer: Well said Toni. It also sounds like you may have a family history of Trisomy issues... has a genetics councelor looked at your family background yet? I always thought Trisomy defects were caused by flukes and were not hereditary, but you sound like you have more than one blood relative that has been affected. I also want to add that we also were in a situation of having to make the decision to carry to term or terminate a DS baby. My daughter was 15 months old when they told us the baby I was carrying had Down's. Fortunately for us, ours turned out to be one of the many false positives that the testing often reports and an amnio ruled out and problems. We would have terminated though... we had already made that decision. Emotionally, mentally, financially... we weren't in a position to even think about raising a special needs child. Everyone needs to make their own decisions in life and we all do the best we can. =
Answer: My 21 year old sister learned that she was pregnant with a baby who has down syndrome and could have terminated but choose not to, being unable to take care of the baby herself she asked me to adopt him. Which my husand and I did. He was born and had a very significant heart defect that required surgery when he was 3 days old. After many complications he passed away at almost 10 weeks of age. Those 10 weeks for my family were the most precious and valuable we have ever lived. His spirit was so strong and sweet and he touched so many lives during his breif time on earth. My sister has never regreted her choice and neither have my husband and I and we look forward to hopefully adopting another baby with down syndrome and likely a heart defect and if the outcome is similar that is ok to. Life is about the journey and if I could make a choice to change one thing that we did or my sister did I wouldn't I would do it all over again. It is far better to love and lose than to never love at all. =
Answer:
my heart goes to all of you who have to deal with DS. my sis in law is havg a DS child.she cant take care of the child by herself, the family including my ill mum in law is finding it really hard. pls.........anybody who plans to keep DS children ,pls do it only if you can take care of them =
Answer: i just lot my baby girl on friday, she was 5 months old it didnt matter she was downs syndrome that was never an option, she had two major heart operations and still managed to smile, i have three other children who have fell to pieces because of her death. They are all fit and well and i was only 31 when i gave birth to her! What i am trying to say if you think you can cope with all the heartache that comes with having a child with downs syndrome then go ahead with the pregnancy because in the short time my baby was here she gave us so much happiness. =
Answer: Have an amnio to know for sure. Downs babies are very sweet and loving. If there are no life threatning problems, keep the baby. =
Answer: Ana... I agree that DS BABIES are cute, cuddly, sweet, etc... Have you ever tried to pick up and cuddle a DS grown man who out weighs you by 80 lbs? While it's adorable to hold, feed, rock, diaper a baby with health problems; it loses its cuteness when you have to diaper that same grown up. Many people make their decisions based on what the future has in store. It's simple math that shows your children will likely outlive you and that often means that someone else will have to help take care of your son or daughter. I understand that some DS people are high functioning and can hold jobs and live in apartments, but there are an equal number that can never provide for themselves and will always need assistance with lifes most basic needs. We based our decision on that thought. While, I'm sure, my older children would have loved a younger DS sibling and probably would not have given much thought to the DS while they were growing up. How would those same siblings feel when they were put in the position of needing to have their DS sibling live with them? Would they have been in the position to take on the care of a completely dependent adult while they were trying to raise their own kids, start their own careers? It's a gut wrenching decision and very few people see it in shades of gray. Another comment to the post from "Christine" who wrote "It is far better to love and lose than to never love at all." What makes you think that we don't all love the baby's we are making these decisions about? Am I only capable of showing love by allowing my baby to suffer through his or her life? Pretty callous comment in my opinion. =
Answer: I wonder if anyone can help me out...I am 24 years old and in my 15th week of my first pregnancy. I had my "maternal serum screen" done last week. I thought it was too early to do it, but due to some other genetic issues, the genetic councillor suggested I have it done. I got a call yesterday that there is a 1/87 chance of DS in my baby. That is high for someone my age, but they said it may be because I was tested too early. I am going for a date determining ultrasound in a couple of days, but I am scared as hell. I don't know if I would be prepared to raise a child with DS, but after experiencing the joys of pregnancy, I don't think I would be able to terminate. Not to offend anyone who has a DS child, but I am really hoping that they tested me too soon and that my baby will be healthy. I guess I am just looking for people that were high risk, but ended up with a flase positive and a healthy baby...curious what my chances are. =
Answer: newmom, when I had my 1st trimester screening I was given 1/16 chance of DS! This too was considered high odds for my age (36). Because I was so scared, I had a CVS test done that showed it was a false positive. I am now into my 18th week and everything seems to be progressing normally. I found that you get a totally different perspective if you turn the ratio you are given into a percentage. Look at it this way...based upon your odds of 1/87, you have a better than 98% chance that nothing is wrong (and LESS than 2% chance of DS)! Hope this helps. Let us know how it goes. =
Answer: I am 23 weeks pregnant. We decided to have an amnio and if the results were bad, we would terminate. My results were fine but if not, we would have terminated. I grew up next door to a DS boy and he was sweet but as he got older he was hard for his parents to control. Do what you think is best for your family. =
Answer: Newmom: I am 40 years old and had a positive AFP for Downs, 1:64 chance and also a positive 1st trimester screening for Down's Syndrome. Needless to say, I was scared to death for weeks until I had an amnio which came back normal. Too many false positives with the AFP, so hang in here and I wish you the best. I have read 100's of postings on various sites and 99% of the time the babies have been normal. =
Answer: now for all, a message from a person WITH down's syndrome, i can understand peoples different views, the one i have trouble coping with is "it is right for the baby".... like killing grandad because he has arthritiis... would be best if he doesn't suffer... i think "it is right for the rest of the family and have to put previous childrens needs first" may be appropriate and perhaps a reasonable measure to terminate, but never justify this decision by saying you are doing the "right thing for a baby" by scattering their ashes... anyway a young lady with downs syndrome wrote this:
What Is Down Syndrome For Me?
I went to normal schools (whatever they are), and I was in the regular classes. I liked my schools and I liked my teachers. I found the work hard, but Mum helped me with my homework and my reading.
They have always said that people with Down syndrome would not learn very much. When I was eleven, in Year 5, my teacher wrote in my school report: "We should not expect too much of Ruth". But I wanted to show people that they are wrong about me having Down syndrome. Inside me, I had the feeling that I can do things.
But then I had to change schools as there was no help for me in the senior school. In my new school I did some classes with the other students and also did special education. I wanted to learn to type, but the teacher said learning to type was too hard for me. But I did it, and kept on trying.
So what was it like being a person with Down syndrome at school? I didn’t have many friends in senior school, and sometimes I felt "outside". At lunchtime, I used to go to the school library and read books. When people were mean to me, I just walked away. And when some people were not interested in me, I felt left out. I felt lonely then. They were not friends of mine. And some people stared at me, and sort of pointed at me, and I found that rude.
But I wanted to keep learning so after I left school I enrolled at a word processing course. This is what happened! The teacher called my name out in front of the whole class and asked me if I could type. She thought because I had Down syndrome that I had no keyboard skills! But I did not understand all the work and I asked for help, and that upset the teacher. And then the other students said they needed help too! They all thanked me for standing up to her. And I passed the course.
Having Down syndrome means it is harder to get a job. And when they do offer jobs they are not suitable, like the job at the airport, which was shift work starting at 7.00 in the morning and the last shift ending at midnight! And then I would have to get home. How would I do it? But I had two office jobs, and I was the relief switchboard operator, but those jobs finished.
This is great news! And I have been waiting a long time for this! I am now employed in a permanent part time job as a clerk with the St George Bank in their Head Office. This is a good job. I like doing the work, and I like the people there and I have made friends in the workplace. When I wear the uniform I feel business-like. I am part of the St George team. I fit in.
I always wanted to be an actor and I have done it! I started doing drama classes when I was eleven years old. I never thought I would be an actor on TV, but I was asked to be in " A Country Practice" in a guest role. Then I got another job. I got a part in a play on the stage. How did I get involved in it? Well, I auditioned and I got in.
The play was called "A More Fortunate Life" which is about two people who have a disability, and how they cope with it. The five of us, including the director, did the writing of the script from the workshops we did. We took it to the Adelaide Fringe Festival and toured New South Wales country towns, playing in schools and theatres. It was a full time job and I loved it. Then I auditioned and got a role in the TV series "House Gang", a comedy series about three people who live in a group home which was shown in Australia on SBS and also went international: it was shown in the United Kingdom and Sweden. I loved playing the role of Belinda because she was very romantic! We made a second series in 1998 with the support of Channel Four in the United Kingdom.
The actual job was this: it took twelve weeks to film. I knew this work would take all my commitment. I was very honest with myself because I knew the filming would start very early and finish late. It was strenuous. As an actor you’re not supposed to think of other people but yourself and the other person that you are working with. You have to make it happen for them as well as you. Team work. Acting is a hard job but I love it!
People always ask me how do I learn my lines? Do I have to have help? Well, I don’t. I learn all of my lines by myself and I keep at it. I also know the whole script. I never miss a cue. I do my job, and I work very hard. I am always ready on time, and I am very well organised.
One of the videos I made is called "Talk About It". It is about sexual assault. The aim of this video is to teach people that you have rights and you can ask for help. The Chicago International Film Festival in 1997 honoured the four of us who acted in it with an Award for Talent.
So as an actor who happens to have Down syndrome, I have been able to get lots of work. I have done videos promoting rights at work and in the community, and I have performed at launches and promotions. As an actor I hope to encourage people with Down syndrome to get out in the world and do things. I want to show people through my acting that they can have a life like anyone else. I would like to say to people out there with Down syndrome to just carry on. Don’t let it worry you. Just do your best!
What Down syndrome means to me is that I can have a life just like anybody else. And I have made a life for myself. I represent people with disabilities on three committees. I am a member of the management committee of the Down Syndrome Association of New South Wales.
I like to contribute to the community, to help people and be useful. So I do volunteer work. I am often asked to give talks to community groups, university students, and schools, mostly high school students, and that’s important because they should know about us people with Down syndrome! Over the last four years I have spoken to over thirty schools. I also work as a volunteer at Mary MacKillop Place in North Sydney in the coffee shop.
I swim every Sunday with the Bondi Mermaids in the ocean pool right through winter. And now I have joined the Bondi Icebergs. It’s cool!
My brother Michael is also cool. Nanna is dead now but I still love her. We had the best times together. Friends are for the good times and the bad times. That’s what friends are for! Friends are on your side for ever more and they won’t let you go. Some of my friends have Down syndrome and some do not. I have special close friends and I ring them up and talk about things like the family, work, the weekend, and we try to go out with each other to the movies or go out to lunch. When their birthdays come I send them a card and ring them up on the day because it makes it special for them.
But there are things that I cannot do. Michael stays out overnight. Why can’t I? Michael goes away on weekends. Why can’t I? I know why! Because I can’t get there, and I can’t drive the car, and my friends can’t drive either!
Now this is the kind of thing that makes me mad! I went to the bank with my mother to open a cheque and key card account because I had a job and I was earning money. The lady in the bank kept on asking mum all the questions, and she didn’t ask me anything! I felt like saying "Hello! I’m over here, lady"!
I strongly believe that adults with Down syndrome can have a life! People with Down syndrome need to support each other and now we have our own association. I am past President of the Future Adult Advisors. We call ourselves the "Up Club" and we are a peer support and self advocacy group. The aim of our group is to help each other and to make new friends, and to make other people aware of us. And we have over one hundred members.
What is Down syndrome for me? I do not feel any different. I know it is there, but I do not think about it. I carry on with my life. It is not going to stop me having a flat one day and getting married. I have learnt to be strong and can cope with people who are mean to me. I don’t let it worry me. I feel secure.
In a play I did, my final speech is a powerful monologue, it really hits home.
And from me, over forty and pregnant, they can stick their amnio's fair up their bums, the miracles of modern science to me (and this is just my opinion) are just like hitlers eugenics to create the 'perfect race'...... =
Answer: to the woman with DS, God Bless You! You don't know how refreshing it was to hear your story, and you are absolutely right! I hope to show my unborn DS baby that he too can achieve a lot growing up and whatever he chooses to do, whatever his gift are, I will be right behind him in love and support, you keep up the brilliant work you are doing. =
Answer: Sylvie here is the link where Ruths story is, and good luck with your baby.:
http://www.dsansw.org.au/index.html
there are other good stories too, for those that do decide to keep their babies. It is a personal choice but after doing a google image search on 'abortted fetus 20 weeks' i am definately not going the road of genetic testing... and i am WELL over forty. Guess i just wanted to post this not to make people feel bad who decide to terminate, but just to give the other side of the coin, physicians etc do tend to be rather 'pro' testing and terminating and it is good to know everything, the good the bad and the ugly, not just the bad and the ugly. I had a bit of a chuckle at the post where the cute downs boy became difficult to control as he got older... sounds pretty standard really, anyone who has had teenage sons would relate. God bless all whatever decisions they make, just remember, the right choice is an informed choice. A termination may be a right choice for some but for others may just lead to a lifetime of regret and guilt. As for what happens when i die if i have a downs child and he/she is an adult, well he or she will probably end up in a group home, maybe meet someone and fall in love. As one study on the impact of marriage on ds adults one landlady reported to what it was like living with a ds couple upstairs. "They're just like any other married couple except they're happy all the time". =
Answer: Its not easy for everyone, especially when other memebers of the family have to suffer because of anyone's decision to keep a DS child. =
Answer: sorry if i sound rude. didnt mean to hurt anyone =
Answer: My heart goes out to you. When I was pregnant with my 2nd, I miscarried at 5 months...still dont know why. Then a month later I became pregnant again. During an ultrasound at 6 months, they discovered my daughter had a kidney that wasn't functioning.
The ultrasound tech. actually suggested I abort the baby!!!! And this was in a Catholic hospital!!!!! I chose not to. Terra had to have
kidney surgery at 3 months of age and only weighed 13 lbs. The tube that connected the kidney to the bladder was blocked. The surgeon cut the blockage out and re-attached the tube and her kidney has never had another problem. She will be 15yrs old in 5 days!
I believe you should follow your intuition and your heart. Doctors aren't as smart as they tink they are! =
Answer: I miscarried a trisomy 21 healthy twin at 15 weeks. The Trisomy 21 baby died at 7 weeks. =
Answer: i am sorry and i know you want to hear from someone who was in the boat. I think that everyone should be given a chance. no one should put a child down because what they look out because it may not turn out the way the doctor say because god is the one who is doing all the work. if you trust in god then eveything will be ok. beside you was sent this child for a reason from god beacuse he know you will do the right thing. if he know you wasnt going to do the right thing then you wouldnt have second thoughts on it you would have already done it. I see you already have 3 health kids you should not terminate that child because in a long run god is going to bless you, but i cant speak for you all i can tell you that god has brought you a gift that he wants you to have because you will take good of it. just know you will be bless in the long run take care beacuse you would make the right choice and the little one will do alright.
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Answer: My third child is DS. she is now 6 months and has been such a blessing in our lives and everyone around us. I wouldn't trade her for anything. No it is hard to think about the struggles she is going to go thru during life and you don't want your kids to have that. But always remember GOD has a plan. You may lose this baby and that would be part of gods plan. Alot of time we don't understand his intentions. We went thru alot of question, why god? Why us? But never did i consider abortion! When i look at her precious face i feel guilty that i had all those emotions when i found out about the DS. She has touched so many lives. She has been thru 2 surgeries. When we were at the hospital after birth, the next day she had surgery for the blockage in her stomache. He she did so good, you look around and some of the babies in the NICU and realize, gosh we are lucky. Some babies live in the hospital etc. GOD chose my family b/c he knew that we could care for his special child. And he is right! I'm so thankful for our little blessing. She is our hero!
Good luck. I know you are going thru lots of emotions and that is natural, we are human. =
Answer: Sorry to take so long in replying. Thanks to everyone for your advice! Turns out I am pregnant with twins, so the numbers are totally invalid. I should really wait for the full picture, but we all know it'shard not to worry. =
Answer: Hi I am 21 wks. and 35 yrs. I had a level II u/s a few days ago. I had an abnormal triple screen for DS. This is going to be my last baby and I thought I would enjoy this time . NOT even close. I have been so stressed out. Well anyway I was given odds of 1:201 for the abnormal triple screen , then we had the level ll u/s they said kidneys were a little larger than normal not by much(no numbers given) but it was still a soft marker for downs my odds are now 1:90.I declined the amino. So we have an another appt. in a month .DR. said everything else looks fine and this problem is kind of normal in pregnancies mostly male fetues,and most of the time it can go away by the third trimester.So now what are we supose to think???? I guess we have to just wait .I was also wonddering if any one else had anything like this happen to them? Thanks
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Answer: My daughter is 36 and pregnamt. She was just told today that her blood results show Trisomy18. She "does not" want to have the amnio done but is willing to have all of the other test done to determine if the baby is affected. Is the "amnio" the only test that could determine for sure if the baby is affected??? =
Answer: I'm so sorry for you and your daughter. The only tests that will diagnose Trisomy or Downs is Amnio or CVS. What was the risk they gave her based on the bloodwork? Did she have the ultrasound as well? I had an issue w/ T18 on my last pregnancy, but they were wrong and she is a perfect 19 month old girl now. I hope they are also wrong in your case. Colleen =
