Why It’s Time to Start Telling the Truth about a Down syndrome Diagnosis, by Leticia Keighley

I was listening to a story recently of a woman who became pregnant with her first child when she was just 16. My mouth sat open wide as she explained how hard she had to fight to keep her baby, being a “good Catholic girl” in the 1960s.

It was the norm back then. Young mothers pulled out of society and whisked ‘away’ somewhere to either have a termination or disappear for a while until the baby was born only to be forcibly removed and given up for adoption. These sorts of practices were commonplace and considered to be ‘for the best’. This woman had all sorts of so-called experts in her ear, from the local priest, the doctors, family and friends weighing in on what was best for her, the baby and ‘good taste’ apparently.

It’s not like that anymore.

Society has realised over the past 50-60 years that it’s not the end of the world if a young mother has a baby, actually. We know that tearing children from their mothers and raising them in foster homes or boarding houses away from them is not the recipe for a well-rounded upbringing.

We know that so we don’t do it anymore.

In the story, the woman recalled how her son was called a “bastard” purely for being born to an unwed mother. She talked about how little support she had and how hard it was back then. This woman was a trail blazer, refusing to be told what was best for her and being a part of change that would bring us to the better place we live in now.
No one looks back at those times and considers it ‘Best Practice’. No one looks at the damage done to young mothers and their children as a result of forced separation and uses that to advise young mothers today.

We know it is better to support parents through challenges rather than demonising them for their choices. We know that when we stop telling children they are ‘worthless bastards’ who should never have been born, they grow up having more pride, confidence and control over their lives.

When a young girl becomes pregnant at 16 today…we don’t go looking to the 1960s for advice…

….so why are we still doing it with Down syndrome?

A Down syndrome Diagnosis

When parents receive a prenatal Down syndrome diagnosis, the information and advice given by many health professionals is wildly outdated and skewed heavily on the side of Doom and Gloom.

When parents get their results they are told all about the physical, developmental and health conditions that MAY come with the extra chromosome. They are given the worst case scenario even though it probably won’t be their reality…just in case it is.

It is important that doctors tell parents about the increased chance of medical conditions and the likelihood of intellectual disability. It would be negligent not to. Parents need to know what may over the horizon for their child medically and be best placed to intervene or treat it.

The problem is, health professionals are not giving the other side too. I have heard people in the medical world describe how it is considered to be ‘painting too rosy a picture’ or ‘romanticising’ Down syndrome if they tell parents about the potential positives or about the support services available before they have decided whether to continue with the pregnancy.

As though it is ‘for the best’ if people don’t get their hopes up about what their child may be capable of before they make a decision.

Potential difficulty and heartache?….think long and hard about it even if it might not happen.

Potential happiness?…..best not to think about it in case it doesn’t happen.

If it is prudent to give parents the worst case scenario about health and development, it should be equally prudent to give the information about what help and support they can access. It’s not biased to give positivity and hope as well.

Why do parents have to wait until after they have decided to keep their baby before they are allowed to discover that the vast majority of families love and cherish their kids and wouldn’t change them for the world. To learn that early intervention principles, health advances and inclusion means that the kids born today will have longer and healthier lives than those born 50 years ago? To learn that different doesn’t necessarily mean bad and people with Down syndrome can and do live happy, meaningful lives.

The positive and negative information should go hand in hand…not handed out separately after parents have chosen their path.

Yes, by all means, tell parents that if their child has Down syndrome, it may take longer to reach developmental milestones and speech may be difficult….but also tell them that there is early intervention available and with regular physio and speech therapy, their child will develop and learn. Tell them about the state based Down syndrome organisations that are there to support them. Tell them about funding packages, respite, support groups, therapies and help lines.

Yes, tell parents that Down syndrome brings a higher chance of congenital heart problems….but also tell them that many issues resolve themselves or the surgery has an extremely high success rate with kids going on to flourish afterwards.

Tell them that some children have many complex health issues….but also tell them that many have no health problems at all. Tell them that everyone with Down syndrome is different and unique and not everything on the long list of ‘maybes’ will apply to them.

Yes, tell parents that their child will have some degree of intellectual disability and may face challenges….but also tell them about how much we are learning about how the brain can learn and make new connections. Tell them that there is a new family of incredibly supportive parents out there who can help them see how amazing our kids are and show them what is possible. Tell them that Down syndrome won’t define who their child is.

Yes, tell them that their child has Down syndrome….but don’t use the stereotypes from the 1960s as examples. Parents need current up-to-date information to understand what Down syndrome is today. Tell them about the army of pioneering parents who fought to keep their children at home and out of institutions.

Tell them about the parents who demanded their children be taught in mainstream schools or receive therapies that would improve their development.

Tell them that in the 1980s, the life expectancy for people with Down syndrome was 25. Today it is over 60.

Tell them how much has changed since the 60s and is continuing to change.

But tell them before they have made a decision….not after.

Don’t withhold this equally important aspect in a sealed envelope only to be handed over once a parent has decided to proceed. It’s not up to health professionals or the media or anyone else to decide what information is ‘for the best’. Parents should be respected enough to have all the facts in order to make decisions for themselves.

It’s not the 60s anymore.

It’s not ok to tell parents that their child will never walk, talk or learn anything. Mainly because we know it is not true for the vast majority of people with Down syndrome but also because it’s not ok to set parents on this path with dangerously low expectations of what their kids are capable of. No one can guarantee any child’s future but they have a much better shot at a bright one if people invest in and nurture their talents instead of expecting absolutely nothing from them from the day they are born.

A lovely couple came over to chat with Wade and I recently and tell me about their son who is 26 and has Down syndrome too. The man said the most beautiful thing to me…

“People always talk about how bad the world has become. They’re wrong. The world is a much better place for the kids now, much better than when my son was a child.”

**************

leticia keighleyBIO:  Leticia Keighley is a writer from Melbourne, Australia.  She writes at her blog Embracing Wade about the lessons learned from raising her son Wade who has Down syndrome.  She also advocates for change as well as showing how very very normal her life is at her Facebook page too.

 


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Meriah
Meriah Nichols is teacher and artist who lives in a yurt off the grid. She is deaf, has 3 kids (one with Down syndrome) and a lot of chickens. She writes about travel, disability, and getting dishes done. She likes her tea Earl Grey and hot.
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@meriahnichols

#deaf mom, teacher & #disability activist, living in a yurt #offthegrid. 3 kids (1 with #downsyndrome), a camera and a lot of chickens. Never a dull moment
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30 Comments

  • Absolutely!!! So glad you wrote this. Our experience was with Spina Bifida instead of Downs, but I related to every single word of this. Shared and tweeted.

  • “I remember what the doctor told me after my son was diagnosed with Down Syndrome. “Don`t worry. He will not get older than six years. And if – he will be a clown!” Crazy, crazy….

  • The same happened with children affected with any kind of problems. I have a child with ASD and it is also difficult deal with the “worst”. From doctors to relative… always the same. I rise a family, not a “naughty condition”. I love my son and I learned how to deal with, not to blame myself. You have my support and I am agree with this point of view. Thanks!

  • Well written! You have spoken the words of many parents of exceptional children like your son. My son has autism, but when I had done prenatal testing, I was told my son could have Down Syndrome. All the 1960’s info was presented to me, but even then, thanks to prayer and support from family and friends, my husband and I were determined to have our son and advocate for him no matter what. I am so glad I listened to my heart. Today I blog on http://www.exceptionalmomchild.wordpress.com about how my 8 year old son with autism has changed my life for the better. Keep up the great work! I look forward to reading future posts.

  • Perfectly written. I could relate to every single word. I was given the scary packet of info and the dooms day speech with my first child (who ended up being born completely healthy). I was highly encouraged to think of my son and spare him the life of sadness – I chose to let him live. He is healthy. My youngest daughter, Lucy, has Down syndrome (FB Little Miss Lucy and the Upside to Down Syndrome). She is adopted. Sadly, her birth family was given the same scary info and hopelessness. They almost aborted, but reconsidered, thankfully. They didn’t think they could care for a baby with as many challenges as she could have (the packet listed PLENTY). They chose to let us adopt her. We are so thankful for this every day. What a beautiful little life that almost ended.

  • Thanks for this post. We knew about our daughter’s Down Syndrome at the dating ultrasound. But, that didn’t stop a doctor from telling us all the negative “maybes” only 3 weeks before our due date. It was heartrending to see what that did to my wife. Kira’s a healthy vibrant 10 month old and we couldn’t be happier.

  • My 37 year old daughter in now in her final term or her pregnancy. She was told right at the beginning that she may be having a down syndrome child and her pregnancy has been one of stress due to the maybe. She and her husband decided early in the pregnancy that this was their child and they were going to have it and love it no matter what. They would not kill what they had created. I was so proud of both of them for the decision that they have made and all of their families will stand by them if it is needed. I am also very angry at the medical profession who have caused such a high level of stress for my beautiful daughter her husband and my two loving grand children. Archie will be born in the next four to six weeks and will be welcomed into this world by loving family and friends.

    • how wonderful that he will be surrounded by so much love! and if he does have Down syndrome, you could not ask to be a part of a more awesome community. xoxo

    • Hi Jacquie,
      I was told at 4 months that my daughter Elizabeth may have Down Syndrome. Well, she does and I cannot be happier. Which ever way this birth may go, love that child with all of your sole and he will love you just the same. I am so very proud of my baby girl. She is now 1 year and two weeks old and just got her first tooth last night. We are so happy and super tired being she was up all night. LOL!!!

  • I appreciate this post so much! I received the diagnosis last week that my baby girl, expected in November, has Down Syndrome. Most of my experience, especially from the medical side, has been the doom and gloom. I am glad my husband and I have chosen to welcome our little girl despite all of the ‘worst case scenarios’ and are now beginning to find hope from the few friends we have that have real experience with down syndrome in their own families. It is wonderful to know that this diagnosis is not a pronouncement of hard times, heartbreak, and hopelessness.

  • Thank you Meriah for posting this, and thank you Leticia for writing it! The problem of the medical profession prognosticating only the negative is not only a problem for a diagnosis of Down’s Syndrome, but of most all physical and mental disabilities at birth. As an individual who has a form of Muscular Dystrophy and has done lots of disability advocacy, I have heard this story over and over again. Unfortunately, the medical model attitude contributes to the greater society’s attitude and stigma of disability. We need to keep speaking out and changing the status quo! Thank You.

  • I am sorry but you guys are all just plain crazy. If my child is at any moment diagnosed with anything really negative, I’ll just abort and be done with it. There is no need to bring someone into the world who is going to be a burden for their parents, their brothers/sisters and society, whom is going to have to be taken care of for their rest of their lives and I will have to worry about what will happen when I am no longer there to take care of them. It’s just plain stupid. It’s different if you already have him and they get a disease or have a terrible accident, but to actually have the baby when you know it’s not going to be healthy,, crazy. I have known several cases of this and none seems to be actually a good case scenario. I have a friend who just loathes her brother who is Down, and her parents for expecting her to take care of her brother who is older than her. They expect her since she was very little to always take care of him and devote her personal time to him with no time for her. This has made her resent her parents and her brother and even though she also loves them, and feels very bad about feeling the other way, it is just bigger the resentment for having lost her childhood. The moment she turned 18, she managed to get a grant for a university at the other side of the country, then she moved to another continent to find work and be as far away from them as possible. This is just so sad. I would not want my other children to feel this way, that they are non important and I only care about their brother because he is different and needs care. And I know you will probably not publish this. You will think, it’s a troll and doesn’t merit publishing. We’ll I am not a troll, I just think like that and a lot of other people do also and I think it is actually good that there is different opinions about this, everyone deserves to be able to speak what they think, free speech and all that. And people should be able to post contrary opinions to politically correct opinions. I would never force parents to abort a child, they are the ones who must decide, but I do think it is good that they are recommended to abort and not painted a pretty absurd and romantic picture about how these kids are innocent and so loving. They can be, but also can be a real pain and terror (experience with my friends brother). I hope you are brave enough to actually let this comment publish instead of censoring.

    • Rosalind,

      It’s always a source of some amazement to me that people like you who write/think this way ALWAYS have some friend who supposedly has some experience with Down syndrome. It’s never first person. You are talking about the experience of another family, another person, and if you haven’t lived it, you don’t know it. Point blank.

      Second, your logic is flawed. If you don’t want a child who will be a burden ever, don’t have a child. Because children are ALL burdens to their parents, no exceptions.

      Third, health has precious nothing to do with disability. You can have a healthy child who has a disability and an unhealthy child who doesn’t. Do your homework, sister.

      I recommend you spend some time at Down syndrome Pregnancy and learn the facts: http://downsyndromepregnancy.org

      Meriah

    • Dear Rosalind,

      You are correct that you have the right to have your say, and contrary opinions should be published. But you are not right that anyone here is being “politically correct.” Your attitude about aborting children with disabilities is an affront to all people who are alive and living with permanent disabilities (from birth.) I personally, as a person with a physical disability, take offense. I know you don’t necessarily mean harm, and you feel your option is merciful and practical, but it’s simply not moral or ethical.

      I don’t doubt that the story of the family who put the burden of care on the sister is real. The problem in that situation is not that that family should have aborted, but that they should not have put that burden on the sister. It is understandable that she reacted as she did, and she felt burdened and bitter. It is unfortunate that she was put in that situation.

      The thing about “burden” is that that term is heavily subjective. One person’s burden might be another person’s privilege. It should also be noted that you have made certain assumptions. People with intellectual disabilities, including people who have Down Syndrome, can live independent lives as adults. They may need supports and assistance, but that doesn’t mean they can’t, and shouldn’t be able to, make choices of their own and contribute to society. Many people just assume that the child is to stay home permanently, and it doesn’t have to be that way. Unfortunately, they make it so by doing so, by not encouraging their child and seeking out supports. I know from personal experience, and from talking to many parents of children with intellectual, behavioral, and emotional disabilities that everyone belongs in society and can contribute in some way.

      Does “supports” mean tax payer funded services. Yes it does. But it also means jobs for the people who assist people with disabilities. It also means true freedom of choice (a natural right) for persons with disabilities, and an opportunity to give back to society. Now, you could make the argument that we are a “drain” or “burden” on the tax payer system, and maybe from a purely financial standpoint you would be correct, but the question is – what type of values do we want to have as a nation? The type of society that gives every person a chance at life, and gives the supports for freedom, choice, and independence, or a society that is only interested in the bottom dollar line, at the price of life?

      Again, it’s unfortunate that your friend’s family went through that ordeal, but it didn’t have to be that way. We as a society should not put the entire onus on the family, and should make sure they have the supports they need, through the child’s entire education, and then into adulthood. If we make that choice, then no family has to be “burdened.” It’s certainly not as easy having a disability or being the parents or family members of someone who does, but that doesn’t mean it is an impossible task, and certainly doesn’t mean we should be aborted at birth in the name of convenience.

      Sincerely,
      Jason

      • Well , I totally agree with Rosalind: the siblings situation shoudn’t be overlooked because the burden will fall on them in the end. Why encourage people to give birth to genetic abnormalities?! I don’t care how “special” or “wonderful” (their parents think) they are but they are NOT blessings!! The truth is that they’ll never be independant and they will remain burdens for their family and society. My sister has down syndrome and I think it’s a horrible situation to be in. I don’t wish it on anyone, it’s a burden. Whenever I think about it, I want to cry and commit suicide. I feel stuck and I know that I’ll never be able to have a normal life, a husband, kids and so on because when my parents die, I’ll be the one taking care of her. Future parents, please, you need to get screened for genetic diseases like DS and ABORT if you know that your kid is going to be disabled. If you ever have that kid, not only you’ll ruin your life but the one of the siblings who end up being disturbed and depressed adults most of time (I personnaly know 3 of them who admitted to me that they felt miserable, just like I do). Those who want to sugarcoat the reality of the siblings’ lives, good luck taking care of a 40-50 yo disabled person. The propaganda will make you think that they’re all cute babies and kids but don’t forget that they grow up: it ain’t fun anymore and society is far less accepting towards them. Once again: having a DS kid means no retirement, financial hardships, no rest before you DIE and that burden will fall on the siblings’ shoulders when you die. Don’t be selfish and ABORT that kid while it’s not too late. Your other children will THANK you. And I’m pretty sure DS people would prefer NOT to be born that way either. Future parents who have no idea about the mess they’re getting into by giving birth to a DS baby…trust me, DON’T DO IT!! It’s all cute and sweet first, but it becomes a freaking nightmares pretty fast!! I know it because I grew up with one.

        • Caroline,
          We can all hear your mental health issues loud and clear. Perhaps you should get some counseling and therapy, suicide is no joke. Please get some help.
          In regards to your obvious irrational comments about people with Ds, well they are just that and when people like yourself are living out a mental health issue, they say irrational things and make comments that simply are not true.
          I worry about the safety of your sister and can only imagine how she must feel having the burden of living with a sister who is so unstable and irrational. What would be marvelous is to hear how your sister feels having had the unfortunate lot in life to be saddled with a sibling who is suffering from being a narcissist, weighed down with thoughts only of herself.
          The bad news is so many families have a black sheep, the good news is you can change. I hope you get the help you need for your sisters sake.

          • I’m sorry but some of you are completely deluded and live in a fantasy world. I am not a burden for my sister, neither a narcissist. I am studying hard to be able to find a job that will allow me to provide for her when my parent die, and I always helped her, tried to support her and considered her like a normal human being: unfortunately, she just doesn’t seem to behave like one. My comment is not irrational, it’s the truth and I’m sorry if it’s hard for you to face the truth. I was just stating the reality of living with a DS person. Why don’t you talk about the behavioural problems like going berserk, disruptive behaviour, breaking things, sitting in protest for many hours, refusing to eat, repetitive and pointless actions, lack of hygiene, making weird noises, and other antisocial behaviors?

            Maybe you had better experiences than I had, but it doesn’t give you the right to say that I’m irrational or cruel. What I went through is the reality of many people who have DS relatives. She has ruined my family life and, as a result, I ended up being depressed and suicidal at a young age because I just COULDN’T COPE with this situation. Does that make me an asshole? NO. Can you understand that no amount of care, of money, of love or therapy will ever make her functioning and independent? It’s incredibly sad and heartbreaking. Do you think having a DS child is worth it? Do you think it’s fair for the other children in the family? I don’t think so and if it can be avoided, it should. My former happy family turned into a dysfunctional and unhappy one when my sister was born. The whole family life revolves around the Downs, and there’s simply not enough time or resources for the other children. Having her is a huge burden both emotionally, economically, and it has strained my parents’ relationship hugely.

            After a while, disabled people just get really, really incredibly annoying. With the state of the economy, the selfish and horrible world we live in, it is not RIGHT to allow a child to be born with such disadvantages in life. A simple abortion could have prevented it all this mess. Most of them are not functioning. If we can prevent them from being born, it’s a good thing and I hope I can promote TRUE awareness instead of this propaganda. Lots of parents and siblings of DS people REGRET having them but they lie through their teeth when asked about it because society won’t accept a different answer. There are people like you who have incredible patience and can feel the same for a disabled person, fine. Then there are the asses that put on a show just because they feel they’re obliged to treat their relative better, and there’s me, the honest one.

            Besides, who is going to take care of them when the parents grow old: the siblings (if they’re lucky)! We didn’t sign up for this and it is incredibly stressful. The amount of care needed by some DS people is insane and costly (and don’t forget that at some point, they’ll likely to develop Alzheimer’s). So not only you’ll have to help your aging parents (I’m totally ok with that), but you’ll have to support your own family AND a sibling that will remain dependant on you ALL his/her life! And don’t try telling me that I’m being selfish. We were not all born in a well-off family and this situation limits what you can do in life. Unless you consider it moral to abandon your family and let them starve, because you want could continue on with your own selfish life (and actually enjoy it for once), my choices in life are pretty limited as a result. And this hopelessness makes me want to end it all, YES, and it doesn’t mean that I’m insane: I’m just being rational because my future is unlikely to get better.

            My sister bankrupted my parents and inflected HUGE psychological damages on all of us. And I simply don’t have the MONEY to go to counselling. I totally understand that you want to advocate for DS people lives, but don’t try to fool other people into thinking that having a DS child is worth it, IT IS NOT! I wish my sister was never born and thinking so doesn’t make me a monster: it makes me a down-to-earth person. The cold and naked truth is that DS people are merely tolerated, as much as the “politically correct” attitude permits. They will never reach the same level of acceptance, love and welfare as everybody else enjoys. Sooner or later these children, soon adults, will realize the insurmountable differences and that will make them and their family sad! When they are around, as an accident of the Mother’s Nature, we should all make their lives as good as possible; but to force them into this … I strongly doubt this is the right way!

            Jennifer, thank you for your comment, but I don’t think I’ll ever be able to pursue my dreams. I have no support system and my aging parents are constantly reminding me of my obligation to take care of my sister so that she doesn’t get thrown into a shitty group home or be institutionalized. And I wouldn’t want to impose that on a potential partner or to my children. I’m happy, though, that everything is working out well for you sister and for you, and that you family is accepting towards your other DS sibling.

            Finally, my comments were not meant to be cruel but I just wanted to highlight the fact that parents should know all the fact before deciding to keep a DS baby. If you know that your family has no financial resources and won’t be able to cope with stress, the surgeries, the stares, the humiliations and so on, I highly recommend you to abort. If you are rich, have plenty of support, and can have caretakers till their death then fine. I will never hurt my sister in any way, I know that she has the right to live, but please understand that I’ll never be happy with her.

        • I certainly hope your parents are able to help your sister discover some means of independence in a supported living situation far far away from her bitter angry sister. Her life holds value and I’m sorry you didn’t receive any support as a child but your cruel words can only translate into cruel behavior and your sister deserves more than that. I only hope you aren’t this nasty and negative to everyone you encounter because if that’s the case you must be a very lonely person.

        • Reading your response, I fluctuate between feeling incredibly sad for you and your sister and just being angry and disgusted that people like you exist. I would encourage you to speak with your parents and tell them that you are not willing to care for your sibling so that other arrangements can be made. No one deserves to be at the mercy of someone that has such a deep seeded resentment of them. I would also encourage you to educate yourself there are many stories of people with Ds living happy independent lives with families who love and value them for them. Mostly, your post just makes me sad.

        • Hi Caroline,

          Wow. This is incredibly sad for me to read. To me, it is plainly obvious that you are in need of tremendous support in order to help cope with the difficulties of having a special needs sibling. I am sorry (and in a non-sarcastic or judgmental way – I am authentically sorry) that it seems that has not been a significant enough part of your experience as a sister. I can imagine that depending on the environment and support level, it would be easy to feel resentment toward a sibling that has down syndrome.

          However…

          As the sibling, caretaker, and conservator of an amazing special needs brother who has enriched my life, taught me how to love in an unconditional way, and ultimately inspired my career, I couldn’t disagree more with your post about the burdensomeness of individuals with special needs for siblings. One of my greatest joys in life is my brother – and yes, being his sister has also come with pain and frustration at times. I would not change it for the world. I would feel honored to take care of him when he is 40 or 50, and I pray that he continues living a long and healthy life so I have that chance.

          I wish you well in your own experience, and I hope that love and compassion will guide you toward an alternative perspective and maybe a stronger relationship with your sister that gives to you as much as you give to her.

          Best Wishes,

          AER

        • Caroline, Others have already replied suggesting that you seek mental health counseling and I agree with them. But beyond that I am reaching out to you as someone “in the club.” I too have a sibling with DS – three in fact. Yes, three.

          I am an adult. From you’re writing my guess is you are still in the throes of growing up yourself. Your experience as a sibling is valid and your feelings are too. Your attack on others is not.

          First, you worry mention that people with DS are not blessings. You are right. They are people. Individuals with DS don’t get a magic chromosome that makes them angels. In fact, my sister and I fight frequently. This doesn’t make her “a freaking nightmare” either. She’s my sister. I don’t go online and belittle the experiences of others because I am embittered. I will share that at younger ages I had thoughts of “it would be better if…”. These are common thoughts siblings have as they come to grasp their parents’ mortality and a feeling of powerless to do anything about the future. You are not powerless.

          Caroline, there are options. Please do not let your life-story be driven by bitterness. Your sister does not have to live with you. My sister is an adult and has told me herself she does not want to live with me. Please seek out assistance in your area from a DS support group or DD/ID service to discuss alternatives to living with you.

          You also feel limited to make decisions about relationships that will have meaning and support (“I’ll never be able to have a normal life, a husband, kids and so on”). This is a lie you are telling yourself and have now shared online with others. I have a “normal” life. I have a husband. In fact, meeting my siblings was the perfect way to judge his character. I suggest you take a long hard look at the character your online comment is reflecting. I have children. My children reap the benefit of growing up knowing my siblings – those with DS and those without. They also understand that life is not valued because of one’s intellect. Children are born into this world every day without a test for intellectual disabilities. People have accidents that change their ability to remember things. We grow old and loose skills we used to have. Does this mean we’re no longer valuable as people?

          You may think I’m saying all of this because I have some wonderful “high functioning” sister and a family with no problems. You are wrong. Life is messy Caroline. Its equal parts brutal and beautiful, joy and pain, blessing and curse. No one is exempt.

          You say, “I’m pretty sure DS people would prefer NOT to be born that way either.” I encourage you to ask a person with DS about this. My sister does not like having DS, BUT she loves her LIFE. She loves her boyfriend and her jobs and her family and her sports teams and sometimes… her sister. Unlike you, she isn’t wishing to die because of a diagnosis she doesn’t like.

          Caroline, please take some time to reexamine your life. What do you really want? Do it. Your sister isn’t stopping you.

        • Caroline, I get it. I don’t live it but I’ve seen it. I’ve worked with literally thousands of children with DS in my career and you’ve described your sister as the small subset of individuals I’ve met. It’s a small subset, but it’s still a subset. It can be scary and families feel paralyzed not knowing what to do for long-term plans. Just getting through one day – one moment – is all they can do.

          As in the Autism community where there is a spectrum of abilities a spectrum of ability exists in the DS community too. But we haven’t figured out 1) how to include people like your sister in the discussion of “more alike than different,” and 2) how to support families who experience a situation like your own. As a community our message has been branding the life of those with DS as otherworldly (see phrases like “angels in disguise,” “God’s gift,” etc). This is a reaction to the cultural view of people with DS that existed in the generation of our grandparents and great grandparents. Yes, some people with DS are burdensome. Some people without DS are burdensome. As a culture we don’t do well with supporting or talking about burdens, do we? We sugar coat it or hide it. Bringing it to light makes others angry. That doesn’t mean it doesn’t exist. I think this is what you are trying to do with your comments.

          About mental health services for yourself. I was previously a broke student without the income for counseling. I was able to go for free at a local university. Yes, it was hard because I had to be vulnerable with the student trainees. The first time I sat down to talk I laughed a lot. The counseling student asked, “I don’t understand why you’re laughing when you’re clearly hurting,” and then I cracked open. Cracking open hurts Caroline.

          I am sorry your parents have made you feel isolated and guilty as they’ve focused on your sister. Parents need to understand that siblings may not want/be able to care for their child with DS. You are right. It is a dangerous message to send non-disabled children the message that group homes and other alternatives are evil and to place the child in that situation would be either giving up or detrimental to their well-being. This type of guilt-shame that is placed on the non-disabled child is unfair to both children.

          While I do not agree with your method of airing grievances I understand where you’re coming from. You’ve brought up big problems we as a community need to discuss more openly.

          Do you want to talk personally? I don’t have answers, but I can listen. Cracking open hurts but it lets the mending begin. Email me directly at jbekins AT live DOT com.

        • Caroline, I’m sorry that you feel this way…truly I am. However, the behaviors that you describe of your sister are more indicative of an autism diagnosis than Down syndrome. Autism and Down syndrome can co-exist; and often times it’s the symptoms of autism that take over. What you have described of your sibling is VERY rare and in the minority for Down syndrome. Most people with Down are not like what you have described. They MAY be like this IF they also have autism. And as you know autism can happen to anyone Down syndrome or not.

          I hope that you and your family can come to some better solutions so you do not feel bitter about your family situation!

        • Hi everyone,

          I would like to sincerely apologize for my nasty and hurtful comments. I realized that I have been judging people with DS according to my sister’s behavior, and from your comments, I realized that I was mistaken. I do realize that I came across as a disgusting human being through my comments, and it’s probably because that’s what I became over the years. My bitterness over my personal situation and my ignorance have been clouding my judgment.

          To the OP, I don’t know if it possible to erase my comments but please note that I’m extremely sorry about what I said. I will try from now on to change how I see people with DS , even though I know if it won’t be easy due to my bad experience growing up with one.

          Thank you for those who replied to my comments and who shared their positive experience with DS. I wish you all the best, and please, accept my apologies.

          Caroline

  • Good Morning Meriah,

    Thank you so much for the last message. Some people just don’t get it. Sadly, 92% of women that get such a diagnosis, do abort, yet never really know if their unborn child does have Down Syndrome. I have two aunts that were told that very same diagnosis and both kids were born without Down Syndrome. Well, my baby girl does have Down Syndrome and nothing has stopped her from getting everything she wants in life. Yes, she had open heart surgery and still thrives. We are lucky that she chose us and can’t wait to see what she is able to achieve in life.

    Thank you,
    Stefanie

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