Short.  Overweight.  Large, protruding tongue.   Small eyes, ears and head.  Mentally retarded.  Unintelligible speech.  Frequent illness.  No friends.  No future.  No hope.

There. I have said it. Those were my first thoughts when a pediatrician told me my daughter has Down syndrome. I have never, ever shared that with anyone.  Just typing those words, seven years later, brings tears to my eyes and a deep sadness to my heart.  Not because Ella has Down syndrome, but because I was so wrong in my opinion of Down syndrome.  I feel absolutely horrible that I could think such things.

I don’t, however, feel guilty.  I don’t feel guilty because I only knew what I had been taught.  Yes, our society tends to still have outdated perceptions of Down syndrome.  But that’s not where I learned the most about Down syndrome.  I learned it in Medical School.

In just the first months of Ella’s life, she was already showing me what a “normal” baby she was.  But the knowledge I had of Down syndrome from my medical training stayed foremost in my mind.  I was a Doctor – what I knew from years of higher education had to be right, didn’t it? It didn’t matter that Ella was completely healthy and reaching all of her developmental milestones on time or ahead of time.  It didn’t matter that she had blue eyes, blonde hair, a petite little nose, and a huge smile.  For a very long time all I could see was a dark and untrue picture of Down syndrome.  I couldn’t see my cute baby.

It just didn’t make sense.  I had a perfectly great baby in front of me, yet I kept seeing a different picture.  Where did that mental image come from? I got out every single medical textbook stacked in my closet and looked up “Down Syndrome” in the index.  I went through over 30 books.  All of the photographs of children with Down syndrome were of poor quality with bad lighting and taken somewhere around 1945.  The children wore sloppy clothes and looked like they hadn’t had a shower or clean clothes in weeks.  One picture was taken to demonstrate the palmar crease that some people with Down syndrome have – like this is a really important thing.  I mean, seriously? A line across a child’s hand is important? Anyway, this photo taken to demonstrate a tiny and insignificant physical feature was taken of a baby that was dead.

Why would medical schools and textbooks want to perpetuate such an outdated, inaccurate, and dark image of Down syndrome?

I have come to the conclusion that Down syndrome just isn’t that important to the medical community.  I have spent seven years knocking on the doors of medical schools, medical conferences, hospitals, and doctor’s offices asking them to let me give lectures, workshops, and seminars to update the medical community on Down syndrome.  I’ve sent letters and called.  Yes, I have been successful in some places.  But the majority of the time the answer is “No – we don’t need information on that.

I won’t give up.  The medical community is wrong. The information and the image they are teaching to medical students and patients are inaccurate. They don’t realize the tremendous effect that this negative and limited information has on our society.

Pregnant women fear Down syndrome so much that 90% of them will choose to terminate their pregnancy if  the baby might have Down syndrome (these women have not all completed full genetic testing). And most parents of a new baby with Down syndrome spend unnecessary time feeling incredibly sad.  It’s because they don’t know that kids with Down syndrome are really, really great. New parents don’t know what to expect from their new baby with Down syndrome and so they worry about things that likely won’t happen.

There is so much I want to do to change the image of Down syndrome in our society. Changing the photographs of people with Down syndrome is a big step forward. * It is true that “a picture is worth a thousand words.” A picture can instantly change someone’s opinion.

I need your help to do this. If you would like to share with the world awesome photos of someone you love who has Down syndrome, please email pictures (julia@juliakinder.com) and post them on my FaceBook page (http://www.facebook.com/juliakinder). Cut and paste the release information below into your email. ***

Check out some of my photos in this video.

There’s a reason, you know, why kids with Down syndrome look so cute. It’s so people notice them. If people take the time to stop and pay attention, they will discover that kids with Down syndrome are just like other kids.  “Regular kids” are everywhere you go – at the grocery store, in restaurants, at the park. And I’ll bet you don’t pay much attention to them. But when you see a beautiful child with petite features, an award-winning smile, and a strong look of determination – you take notice. Unfortunately, kids with Down syndrome can’t be everywhere at once to change the word’s perception. So let’s give people the opportunity to get to know our kids through photographs. **

I don’t like putting into print, saying, or even thinking the words that I put on the top of this page. It is hard to admit I once thought those things about my adorable daughter. But upturning the negative image of Down syndrome is going to be a battle and requires facing  the enemy head-on.  The enemy of Down syndrome is the negative, inaccurate, outdated, and dark image that is still in use.

Almond-shaped blue eyes. Long, blonde hair. Beautiful.  Healthiest member of our family.  Normal I.Q.  Swim team. She has more friends than I do.  Loves to read. Fiercely independent. Clear speech in English and Spanish.  Unlimited future. Endless joy.

 

*Thanks to Julie A. Ray of Southeast Missouri State University, there is now a college textbook with a great photograph of a child with Down syndrome. Dr. Ray featured my daughter, Ella, on page 283.  You can view “Home, School, and Community Collaboration: Culturally responsive family involvement” on Amazon: see Ella.

In the search box, enter “exceptional needs.” Among the search results select page 283 to view photo.

Thanks Dr Ray!

**Some photographers have a special gift for capturing, in a photo, a child’s personality. Check out my favorite photographer, Carrie Perez: http://photographybycarrieperez.com

 

Ella has Down syndrome

 

***Model Release

 

I, ______________________________________________________________, for good and valuable consideration, the receipt of which is hereby acknowledged, hereby irrevocably authorize Dr. Julia Kinder to use photographs of me and or my property and authorize him/her (and his/her assignees), licensees, legal representatives and transferees to use and publish (with or without my name, company name, or with a fictitious name) photographs, pictures, portraits or images herein described in any and all forms and media and in all manners including composite images or distorted representations, and the purposes of publicity, illustration, commercial art, advertising, publishing (including publishing in electronic form on CDs or Internet websites), for any product or services, or other lawful uses as may be determined by the photographer or studio named here.  I further waive any and all rights to review or approve any uses of the images, any written copy or finished product.

I am of full legal age and have read and fully understand the terms of this release.

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Date:  ________________________________________________________________

 

I am the parent or legal guardian of the above mentioned minor and have the legal right and authority to execute the above release on behalf of the minor.

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37 Responses to “Changing the Image of Down syndrome”


  1. Michael says:

    Thank you for your post. While I am not a medical professional, I also had very definite pre-conceived notions of the capabilities of a person with Down Syndrome. When my daughter was born with DS, I was devastated. I had horrible thoughts of what might be. Well, I am so proud to say she proved me wrong. She is a happy, smart 6th grader who has a yellow belt in Hapkido and is in the theater group at school. She puts more effort into things we take for granted. She is an inspiration to me. Thank you again for being brave enough to post this and thank you for your efforts at changing the image of down syndrome in the medical community.

    • Julia Kinder Julia Kinder says:

      I remember, too, that feeling of devastation. Instead of enjoying my new baby, instead of celebrating 9 months of pregnancy and Ella’s arrival, I fell into a dark hole. I felt like the baby I thought I would have during my pregnancy had died, and instead I was handed some other baby that I didn’t want. Like you, my baby was smarter than me and proved me wrong! Our kids don’t give up and say “I can’t.” They don’t feel sorry for themselves. They just keep doing. They are more determined than most adults I know. This was a tough blog for me to post – I almost didn’t a hundred times. I didn’t want to admit what I thought, and I didn’t want to put into print the awful image of DS that is still in our society. I was afraid I would anger some parents. It almost seems like a code in our community that we don’t admit how hard this thing is initially. But that is the key – those negative feelings we have when we get the diagnosis and all those fears of pregnant women are based on misinformation. The difficulties we experience aren’t from our wonderful children with DS. The difficulties we experience are a result of myths and prejudices. We shouldn’t feel guilty for the way our society taught us to think. We shouldn’t be ashamed and have to hide our initial and inaccurate feelings about DS.

      I posted this blog because I know In my heart I have to do something to change things. Thank you so much for your support. It gives me the encouragement to continue fighting the battle!

  2. Sharon says:

    Imagine how my husband and I felt 46 years ago when our son was born. The only literature that we could find described our sweet baby as a Mongoloid idiot!

    • Julia Kinder Julia Kinder says:

      Oh Sharon – you are right, I can not imagine how you and your husband felt. And while I have never met you, you are the person I talk about in every single lecture I give on Down syndrome – the person who was told horrid things about her baby yet chose to love that baby anyway.

      I explain in my lectures the history of DS in our country. Until the mid-1970’s, doctors recommended to new parents of babies with DS that the child be placed in an institution. These babies received no health care, no education, no therapy, and most importantly, no loving environment. How could these babies be expected to thrive? We now know that any healthy baby placed in these conditions would have major emotional and intellectual difficulties. I don’t know what happened along the way to cause some parents to start saying “No. I will take my baby home.” I do know that those pioneering parents were incredibly strong and brave and I admire them. They faced ridicule from the medical community – doctors would tell them they were making a mistake by taking their baby home. They likely faced families who didn’t accept their child. And they faced the unknown. They couldn’t run to Barnes and Noble to grab a book on “How to raise a baby with Down syndrome.” They had to figure it out on their own, without therapists and teachers and doctors.

      Thank you so much for your reply. I would love to talk to you someday and find out more about your experiences.

  3. Kristina says:

    Wow! This article is so incredibly true! We only had the risk that our daughter would have DS, but I knew in my heart that she did as we had lost several babies prior to rare trisomies. Anyways, my beautiful Josie is defying all of the literature that was handed to me in the hospitals….the lieterature that surely would scare the bajeebers out of anyone who didn’t know any better. I had worked in special education for 13 years and knew that the literature that was handed to me was NOT true. Funny thing….my friend who is a speech language pathologist actually argued with me that my daughter’s tongue MUST hang out. Ummmmm…it doesn’t. Granted, some of her friends have lower oral tone….but she just doesn’t. She had a hard time believing me. She is grabbing at things….rolled over before her typical cousin at the same age. When I had her three month photo taken…they wanted me to sign a model release because she is so beautiful. Yup….beautiful. I could not imagine how anybody would ever want to consider “terminating” her illuminating existence. Thank you for working on this important topic. A few medical professionals were encouraging….but the majority were not. She has minor health concerns….funny thing….my older two daughters have their own health concerns. Everybody has something….Josie’s just happens to be DS. She completes us.

    • Julia Kinder Julia Kinder says:

      I also had that gut feeling that Ella has Down syndrome. I had a dream while I was pregnant that I had to tell the whole family Ella was going to be a very special addition to our family and everyone would need to pitch in. I didn’t know in the dream that she had DS, but when I woke up that was my first thought.

      I love your sense of humor, Kristina! Your reply made me smile. Sounds like Josie is teaching your friend a little more about the oral cavity and DS! Love it! And if it’s ok with you, I’d love to borrow your phrase “illuminating existence.” Beautifully said. Gave me goosebumps.

      I too, have a “typical” child with way more health concerns than Ella. Such irony in life – I spent so much time worrying about Ella being sick all of the time, and she hasn’t even had an ear infection! Wouldn’t the medical community be shocked at that one.

      We seem to think alike. I think we’d be good friends if we met!

  4. Virginia Reid says:

    This marvelous article has added so much to our extended family’s already loving welcome to my beloved and beautiful great-granddaughter Hannah Grace, coincidentally born with Down Syndrome on March 23 of this year. Luckily her pediatrician was on hand with marvelous info, but thank you so much for your help in bringing all the medical profession up to date.

    • Julia Kinder Julia Kinder says:

      Welcome Hannah Grace!! You are so lucky to have such a wonderful, loving family. I can’t wait to see pictures of you!

      Virginia – it sounds like you already have this DS thing figured out! The fact that you typed “coincidentally born with Down syndrome” speaks volumes about your positive attitude towards your great-granddaughter. Congratulations on your new great-grand-baby! Prepare yourself to love this child more than you can ever imagine. You have so much joy ahead of you!

  5. Robin says:

    Thank you! I am a PA and received very little information concerning Down Syndtome. Our NICU physician said things like “low IQ, never read or drive, stay at home”, and I know it’s because of his formal training and lack of experience with children with DS beyond the NICU. He couldn’t have been more wrong. We have started a new patent group here to try to go and talk to each new parent in the hospital so they know the rest of the story and the true and variable potential of each of these wonderful children. No one can influence their future more than us.

  6. Teresa says:

    I appreciate your post & the comments. My daughter is 20 and has a happy, full life in general. But I also feel compelled to say:
    1. I, too, had the same terrible reaction to the birthing room news that she likely had Down syndrome. We have an adult nephew with DS who is very “low functioning” for lack of a better term. He does not speak, is not toilet trained, has emotional/impulse issues, etc. So this, plus my childhood experiences with the Special Ed classrooms being totally isolated & the children coming & going in the small yellow bus…led me to have the usual stereotypes in place that fateful afternoon.
    2. It is good to be upbeat, we all need this. BUT the reality is, many babies with DS have other medical problems, and lower IQ is the norm. You are very lucky to have a perfectly healthy child with a normal IQ. My baby had a slew of other medical issues from the get-go, so after the emergency C-section scary birth, she was rushed off to the NICU, had major surgery the next day, did not come home for weeks, has had 7 more surgeries since then, and will always have a set of “hidden disabilities” to contend with, in addition to her problems with learning abstract concepts, her overly friendly & trusting personality, her love of high calorie foods and dislike of exercise, and so on.
    3. We encountered only positive medical people that first night. They ALL emphasized the positive aspects of DS and what it would mean for our family. Yes the books I picked up were terrible. But the social worker got us a hospital room visit from another parent in the local DS organization right away, which helped us get organized & focused on what we needed to do. Today, I Googled Down syndrome. The 1st 2 results were NIH & Wikipedia. Yes they both list the usual physical attributes which always seems like overkill to me. But overall their messages seem somewhat positive. I would appreciated seeing that type of article during my initial search for info.
    Again, thanks for your post. I cannot imagine life without my wonderful daughter. But it has been really really difficult on so many levels, and people need to be aware that our kids do have a wide range of abilities and personalities, and parents should not get discouraged if their child with DS is not perfect. It’s still a good life overall, and you will meet so many different people that you would have never encountered if you were not on this path.

    • Julia Kinder Julia Kinder says:

      Thank you so much for your heart-felt comment. I appreciate you sharing your many experiences. I believe each generation of families who have a child with Down syndrome will have a somewhat different experience as we all – teachers, therapists, doctors, parents – learn more about Down syndrome. The very exciting reality of Down syndrome today is that as we continue to develop new therapies and ways of teaching babies with Down syndrome, I.Q. scores are on the rise. Not that I.Q. scores are important – I don’t believe they are. It does show, however, that we should not place limits on our kids with Down syndrome. Early intervention is now routine and is proven to increase development. I disagree that lower I.Q. is the norm. But again, I.Q. scores do not create a fulfilled and happy life. How many people do you know who are extremely intelligent yet are depressed and not meeting their full potential in life?

      I believe our kids with Down syndrome can learn and have limitless possibilities – it is just up to us to figure out how to help them get there. While one method of teaching math may not work for one child, for example, another one will. My motto is “Identify the problem. Find the solution. There is always a solution.”

      Yes, children with Down syndrome may have medical or behavioral problems. But they may be completely healthy. And any child can have medical or behavioral problems. Why should we tell new parents of babies with Down syndrome every-single-possible-thing-that-might-someday-go-wrong with their child? We could do the same exact thing for parents of “typical” babies: I know you are excited about your new baby, but I need to tell you the realities. You won’t sleep the 1st four months because your baby will have colic. When she is 10 months old she may end up in the hospital with RSV. When she is 3 she might break her leg. At seven she’ll need a math tutor. At 10 she’ll need braces and acne medicine. At 15 she will drop out of high school, wreck your car, and move in with her boyfriend…..”

      Yes, our kids have a wide range of abilities and personalities – just like any other kid.

      You never know what life will bring your way. All you can do is make the most of every RIGHT NOW moment.

      Thanks for writing.

  7. Audrey says:

    Your daughter is beautiful! For as long as I can remember a child with Down’s Syndrome has been a part of our family’s life…first my parent’s best friend, then a school friend and for the past 18 years a nephew. When I think of Down’s I think of their amazing smile…their positive outlook…and a child created in His image. I know there are challenges each of these families have faced and from where I sit, I believe the biggest challenge they face is the public perception of a child born with Down’s Syndrome and how even the closest family members treat them. Just like any child…they are a gift from God.

  8. Jen SaeOng says:

    I really appreciate you writing this article. I am currently pregnant and my son will have Down Syndrome. I never considered terminating even though we found out at 13 weeks. However, hearing many times that this is the decision that 90% of women end up choosing has added to my moments of fear. It is so nice to hear stories full of hope. Especially coming from someone in the medical world. Thank you.

    • Julia Kinder Julia Kinder says:

      Hi Jen! CONGRATULATIONS ON THE UPCOMING BIRTH OF YOUR BABY!! I have so many questions; how are you, how is your pregnancy, do you have a name picked out, when is he due, and most importantly are you treating yourself to weekly pedicures?? I’m so excited for you. Please keep me posted and send pictures when he arrives! You have so much joy ahead of you.

      I know, the moments of fear will be there. They are there in any pregnancy. I have found that the fear of the unknown is always difficult. Start learning about Down syndrome when you feel like it – but remember to focus on your baby above all else. Beware the negative information that exists out there – much of it not true!

      I just launched The UPside of Down in March – an entire place devoted to Down syndrome. I’m going to show families how to thrive with this diagnosis and erase the myths, misperceptions, and preconceived limitations. Be sure to check out my website, twitter feeds, and FaceBook page, and keep checking back in. I have much more to come! Soon, I’ll have an iphone app, which I am very excited about.

      Hope to hear from you again!

  9. Michelle says:

    I SO agree on the pictures mattering!! Ciarra’s picture graces the pages of a college biology textbook too! They even let me help re-write some of the negatively-slanted description. I do believe this is progress. 🙂 Ide be thrilled to share the Brushfields spots pic thats in the textbook if you want it. Michelle

    • Julia Kinder Julia Kinder says:

      Great work, Michelle! Yes, of course I’d love to see the pics in the textbook. That is so awesome – how did you accomplish that? I’d also love to know the name of the book, and also the text you helped re-write, if you have it available. Thanks!

  10. ammie says:

    My friend recently gave birth and the doctor’s whisked her son away right after birth. It took her asking adamantly to see her new born baby for about 45 minutes when one of the doctors finally came in and wouldn’t make eye contact and quietly said, “He has DS.” My friend just said, “We know and we want to meet our son.” Her own doctors kept those first beautiful moments from her because they felt such a horrible thing happened to her by giving birth to a baby with down syndrome. Shame on them because her son, to her, is the biggest blessing she has ever been given.

    • Julia Kinder Julia Kinder says:

      Ugh. That is just awful. And it’s so sad that is happening in 2012! Unbelievable. Please tell your friend I said “Congrats on the birth of your new amazing baby!” Welcome to the UPside of Down Tribe!

  11. Marilyn says:

    Your article is an excellent one, and makes some very valid points! However, I wanted to make a point of my own. Your daughter is classically beautiful, and has blonde hair, normal intelligence, clear speech, etc., as you said. HOWEVER–NONE of these things give her life worth. Her life is worth living because she EXISTS. It would be worth living even if she were NOT cute, intelligent, articulate, etc. None of your fears for your child came true. But I would venture to say that for most parents, yes–some of what they expected DID happen. And for most of them, it did not diminish their love for their child, or his right to exist, ONE BIT. I have three amazing girls with Down Syndrome. I can not imagine my life without any one of them! They bring joy, laughter, and excitement to each and every day, just because they EXIST. One of them is short, small head, large tongue, speech difficult to understand–and we ADORE her, just the way she is. Yes, we need to tell parents not to fear Down Syndrome, or consider it a family tragedy. No one should cry in the delivery room because of having a baby with DS! But I am not sure we should reinforce overly POSITIVE stereotypes either! Babies should be loved for exactly who they are–not who we want them to be. And while it’s wonderful that your child exceeded expectations, if she hadn’t done so, would you then not love her? Of course not! I hope you see my point.

    • Julia Kinder Julia Kinder says:

      Of course I see your point, Marilyn! I’m not claiming that looks are important, and I’m certainly not a vain person. Of course all babies should be loved for who they are. My point is that pictures do create instant impressions, and the photographs used by the medical community are outdated, inaccurate, and create a dark image of Down syndrome that just isn’t true. Also found in medical textbooks are lengthy lists describing the physical characteristics of people with Down syndrome. These physical traits are given more attention in medical training than anything else about Down syndrome. In fact, when I lecture to physicians, I have 4 slides that list these traits. Under the left column, I show what is listed in medical textbooks. For the right column, I’ve listed my own version and opinion. For example, next to “Extra space between the 1st and 2nd toe,” I put “Extra space between toes which is perfect for wearing cute flip-flops.”

      If the predominant photos of Down syndrome in the medical community feature photos that would make any child look unclean, depressed, and terribly ill, then why not show photos of the other extreme – of beautiful children with Down syndrome? I know the image that Doctors have in their head – it is going to take some powerful images in the other direction to change their minds.

      New parents who have that dark image in their head when their baby is born need to see pictures of children with Down syndrome who are adorable, happy, and engaged in life! New parents need to know anything is possible! Each new baby born with Down syndrome needs parents who are inspired about the future and its limitless possibilities. Inspired parents won’t go home and give up! Hopeful parents will do everything in their power for that baby. Parents who think the worst just might put limits on their baby.

      With decades of horrible images and negativity surrounding Down syndrome, no, I don’t think we can be overly positive. Every mother loves their child and thinks their child is beautiful. I’ve used my daughter as an example because I know her best. But I’ve also asked everyone to send photos of their children, too. I don’t claim to have the most beautiful child. She is beautiful to me, and not just because of the way she looks.

      Thank you for posting a comment. I loved having the chance to “chat!”

  12. John B. says:

    We also have a child with Down Syndrome. My wife and I were strongly encouraged to abort him. I am so glad we didn’t listen. I made a short video to encourage parents to save their child. Please take a couple of minutes to watch it and share with those who are also expecting a child with D. S. Here is the link: http://www.youtube.com/watch?v=BKlm-kxFzzo

    Thank you for your great work and dedication to these very special people. Bless you!
    John

    • Julia Kinder Julia Kinder says:

      I’m so glad you didn’t listen to the advice you were given. Your video is very, very powerful. You need to make more of them, as you are gifted at using music, voice, words, and pictures to create a heart-felt message. And now I have to get a tissue – whew….that video first gave me sad tears, but then very happy ones at the end. Thank you!

  13. Jen Currier says:

    I LOVE this!!! I have thought (and even written about) how outdated and misinformed the medical community (that I have interacted with)seems to be. I also think it’s kind of awesome that you wrote this post on April 20th, the day my beautiful son, Elijah (with Ds), turned 2. He is so much more than I ever expected- in all of the best ways. I, too, have experienced the fact that people are especially drawn to his cute looks. I sometimes feel badly for the other (typically developing) babies around him, because everyone is so drawn to Elijah and his contagious smile and laugh. I will email you a picture for your project!!

    • Julia Kinder Julia Kinder says:

      Oh Jen, what a great comment! I love your sense of humor! And of course I posted this blog on Elijah’s birthday on purpose – Happy Birthday Elijah!

  14. Liliana says:

    I had my son at the age of 21 and his pediatrician was shocked that a “young mother like me can have such a thing” ….. We were told that there was a 50% chance that our son would be born with down and they asked us if we wanted to take the test to be 100% accurate, we said no, we do not care if he has down or not, he’s my son and in his 4 years of life be has taught me more than my 26 years on earth. I have learned never to underestimated anyone, he has proved doctors and therapist wrong and that makes me a happy mother. Thank you for sharing your story!

    • Julia Kinder Julia Kinder says:

      Most babies with Down syndrome are born to moms under the age of 35! Your doctor should have known that. Yay for you and your son for proving everyone wrong!

  15. Jennifer says:

    I love what you’re doing! My 14 month old daughter was diagnosed at birth with Down syndrome. I was devastated and scared, not knowing what to expect and what her future would be like. I wish there was a physician standing there telling me how wonderful and amazing (and normal!) our life would be. Fortunately it didn’t take me long to figure that all out.

  16. April says:

    Thanks for such a great article! I too had similar feelings when my sweet boy was born. It makes me sad and ashamed to admit it too. I think we all had those feelings, if we’re honest with ourselves. But isn’t it amazing how our awesome kids have changed our hearts and our minds about what they can and will do?

    My high risk OB and the genetics counselor all gave me the same speech about what his limitations would be. Not anything positive, but all negative. It was heart breaking. I have since called that office and left my number with the genetics counselor to give to other parents facing a prenatal Ds diagnosis. I want to be able to give these parents the truth—that having an extra chromosome is NOT all the doom and gloom the doctor will tell you. I want them to physically see my son and see that he is like a typical baby–cute, squishy, drooly, smiley, lovable and so full of potential it will make you cry. Yes, you might face some difficulties along the way (health, cognitive skills, speech, what have you). But you could also face those difficulties with “typical” children too. Just because your baby is born with a normal number of chromosomes does not guarrantee a life free of problems.

  17. Kari Cooper says:

    Hi Julia, my daughter is one month old and was just diagnosed with down syndrome. Im a young mom and this is the last thing on earth i expected to happen. Im also having some of the same feelings you described in your article, although nothing will change my love for my daughter i cant help but feel devastated, worried, scared. I feel as if this is all just a dream sometimes. Although i do feel extremely blessed in that my daughter was born with no health problems what so ever and seems to be hitting her milestones thus far. your article was exremely helpful and touching to me. it was just what i needed to hear at this time. Your daughter is beautiful by the way!
    thank you for doing what you do to support down syndrome, its amazing!

    • Julia Kinder Julia Kinder says:

      Hi Kari! Thank you so much for writing! Congratulations on your new baby girl. I’m so excited for you and all the amazing experiences ahead of you. I know it can be really, really rough at times. But the awesome times will overshadow the tough ones. One of the big myths about Down syndrome is that only “older” moms can have a baby with Down syndrome. This myth is bad for two reasons: it makes older moms who have a child with Down syndrome feel guilty as if it is their fault, and it can leave a young mom in complete shock and paralyzed because she didn’t even realize she could have a baby with Down syndrome! I’m so glad my article helped you. Please let me know if you need more help through this. Be sure to join our UPside of Down tribe on my Facebook and twitter. And show off pics of your gorgeous baby on my FB page. Welcome to the Tribe!

  18. Lanie says:

    Thanks so much for all of your information and insight. My husband and I are having a baby girl next month, who has Ds. I, of course, have good days and bad days. I try to surround myself with only uplifting books, blogs, and websites, such as yours. I am hopeful for her future and pray that we will be a normal family again soon as the news has really taken its toll on me for the past several months.
    Thank you so much for all the information.

    Another fellow Missourian,
    Lanie

    • Julia Kinder Julia Kinder says:

      Congrats on the upcoming arrival of your new baby girl! I completely understand the good days and the bad days – it is only normal to experience so many emotions about something that is new to you. You will absolutely have a normal family. In fact, you already do! That baby girl is going to make you happier than you can even imagine. First thing you should do when she arrives is just enjoy her – she is just a baby after all, and DS is only a small part of who she is. Please keep in touch.

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