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Tuesday, June 10, 2014

Has Quinn Changed your Perspective on Down Syndrome?

I'll be the first to admit, I was devastated upon receiving Quinn's diagnosis because I was harboring old stereotypes and misinformation about what Down syndrome meant. If you read the post I wrote immediately after our doctor made the call about Quinn's designer genes, you can see this clearly in my writing. I assumed my life would never be "normal" again. I assumed my child would be unable to perform even simple tasks like walking, speaking, or reading. And even though I pride myself in being an educated person with progressive thoughts, I was truly ignorant about the realities of Ds until Quinn came along. And I've learned that I was not alone in this attitude. I've had students ask me if Quinn will ever be able to learn, and strangers question whether or not I intend to "put him in a home" when he's older. Their innocent questions, while cringe-worthy, are steeped in the same ignorance I had before Down syndrome became a part of my reality, hence my desire to raise awareness about what Down syndrome really is. There's nothing like experience and education to put things into perspective. Down syndrome is no longer the scary thing I thought it would be two years ago and I see Quinn's similarities to other kids his age far more than I see his differences, and I hope that I've conveyed that message to you.

So I'm curious, in the time that I've been blogging and sharing my experiences in raising Quinn, has it changed your perspective on Down syndrome? Have I raised awareness about what my son is capable of becoming in the future? And is there anything that I should add to my posts to help you better understand what Ds is all about? I'd love to read your comments below!

Full disclosure: I totally stole this idea from a friend's Facebook profile, but I figure the more of us who ask, the more we'll know (cue shooting star graphic and inspirational jingle).



36 comments:

  1. I started following your blog after you went viral with the "troll" post. Luckily, I have had much experience and exposure to Down Syndrome. My sister has been blessed with a gift I do not have-- a gentler soul I guess. While she was away at college she was a respite for a family of a child with Down Syndrome (I doubt I am using the PC way of saying that). I got to know that child and watch her grow. She graduated from high school last year. She has a job and even volunteers, which is at times more than a lot of other people in the world do. People fear the things they do not understand and I am grateful you have such a platform that you can teach others so much more.-- Love Quinn's new pic, he looks so happy :-)

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  2. I am currently 23 weeks pregnant with our 2nd child, another boy! He was diagnosed with DS at 19 weeks. Your pictures on Instagram and your blog give me hope and enhance my already overflowing excitement for this new little joy about to enter our lives. I've joined a couple online parent groups and I've heard such promising and encouraging comments. I feel like I belong to a special and exclusive club :)

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    1. Welcome to the club!! And congrats on your little one :) Here's hoping the rest of your pregnancy goes smoothly and please send pictures when he's born!

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    2. I most definitely will! And thank you :)

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    3. Ps I am Lstamour79 on Instagram if you wanna follow me.... There are many pics of my first born, Nicholas (20 months) and guaranteed I will also over post @ this new little guy!

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  3. Megan, I remember reading your first post after finding out about Quinn's diagnosis. I could feel desperation and helplessness that you and Brian were going through. With Garry and I dealing with fertility issues for the past four years, we have discussed every possible scenario, including what would happen if we were in your shoes. We talked about the helplessness and feeling that it would be unfair to us and to the child: all the feelings that I'm sure you two went through.

    When I read your open letter to the parents who had received news about a child, I immediately showed Garry and we were both in tears by the end of it. It changed both of our perspectives and I don't think we have that fear anymore that life would never be the same again if we were handed the same cards.

    Watching Quinn grow as well as watching you and Brian grow as parents is awe inspiring and it helps that Quinn is so damn cute!

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    1. Now I'm the one in tears; this is beautiful and real and raw and I love it...thank you so much for sharing!

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  4. Hello. I'm a 21 year old girl from Norway. I have a 10 year old little adopted brother with ds. My parents are amazing and I love him so much! I am also shocked how little people know about ds, it seems like people think that ds defines who he is as a person:) i love following you and your pictures of Quinn, he is so adorable and looks so happy!

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    1. Isn't that weird that people assume Ds is a defining quality? There's so much more to Quinn and to your brother, too. Thanks for sharing and reading :)

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  5. My experiences with Quinn and all that I've learned from you and the blog have not only changed my perspective, they've given me the tools to bring that information to others. I'm glad to help spread the word on the misconceptions of Ds and even more glad to have Quinn in the family. (SEE Y'ALL IN A FEW SHORT DAYS!!!)

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    1. Awww, wonderful sis! We need more advocates :) Can't wait to see you!!

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  6. I don't know much about DS and would love for you to add more informative info to your blog. I think it's important to share what you've learned and we love hearing from you... so bring it :)

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    1. Thanks for the feedback! There is a tab at the top of the blog with a page of info on Down syndrome, but if there's more specific info that you're looking for, let me know and I'll do what I can to research and share. :)

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  7. I too started following your blog at the time of your "Troll" post. It touched me deeply. I would like to think I take more notice of the person than the wrapping they come in. No, I don't have any family members with the Syndrome of Down, but have had contact at various stages of my life ( church community, friends). My husband works for a charity organisation here in the Netherlands which plays a part in the education of people about children and adults who are born with this syndrome and other 'disabilities' also raising funds to assist them with some of the activities and extra needs they have. There is a large ( and probably more than one) organisation called The Upside of Down" (http://www.deupsidevandown.nl/) which also does tremendous works.

    I attended a concert a couple of years ago ( Knoop in je Zakdoek Gala) where the artists were ' people with disabilities' when one of them during an interview asked " why are we called people with disabilities, I am quite capable and able to do lots. Who is perfect?" The theatre audience stood to applaud him.

    Megan, I love reading your blog, you never know whose heart you touch, change or improve the knowledge of. Even more importantly- by passing on your experiences you change the world for those gorgeous, heartwarming, loving and precious gifts we call children.

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  8. Megan, I also came here after your post went viral about your beautiful son. I am a full time nanny to a little boy who has SLOS, a disorder where his body doesn't produce cholesterol. He just turned two and still has difficulty sitting up. While he will probably be able to walk and talk in the future, it will come to him very late. When I found your post I shared it with his parents. Like you, they are incredible and strong people who love their children endlessly. Your open letter brought them both to tears. While your letter didn't change my outlood on DS or any other special needs child because I am surrounded by it daily, it did provide a bit of comfort and support for the family. It's hard to watch them struggle with the difficulties that they face in and outside the home. Thank you for sharing your strength and love.

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  9. I am 23 weeks pregnant with my 4th and we are currently are doing genetic testing after they found a marker for ds on my ultrasound, I too am admittedly not educated because my first thoughts have been if I'll be able to raise him or have to send him away, will I have to quit working, will I be able to take care of my older children as well...I also started following after hearing of the awful comment you got on instagram and I'm glad that I've found your blog

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  10. I found your blog when I found out my daughter had down syndrome. I was pregnant and having a hard time. Your post on looking back to the day you found out about your son and what you wish you knew helped me in so many ways. I was happy to know that wasn't the only soon to be 2nd time young mom going through this. You explained all the feelings I was having but let me look ahead into your life and what mine could look like. My daughter is now 7 months old and I have learned so much about Ds but more about just being a mother of 2.

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  11. I am a 19 year old girl from germany and your open letter to a troll went viral in Germany as well as in the rest of europe and thats how i noticed your blog and instagram. When my cousin was 20 he had a stroke he fell in coma. Thanks god he woke up 5 months later but with physically and mentally disabilities. i was only about 9 years by that time but i noticed what was going on around me and how people looked at him when i was in public with him. They were judging without knowing how much he was fighting back into life. After finishing school i decided to volunteer in a school for children with mental disabilities for me it was a unbelievable good experience i have learned so much. Those children not only children with ds have a whole different view on life and are happy with so few things we all can only learn from them. i think you are doing a great job. People should know about the great things we can learn from those special great kids.
    I wish you and your family only the best. God bless you

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  12. After signing the papers on our house in the middle of labor, Gillian was ready to have her baby boy in her arms. We knew we'd be moving 30 days after his birth and we knew that I would be starting law school at some point that year. In short life was about to get VERY hectic.

    What we weren't quite prepared for was 5 seconds after Maeson's birth when the nurse blurted, "OH....he has Down Syndrome." We didn't catch what she said and she apologized profusely. But to us our baby boy was perfect and what few "markers" he had were almost impossible to discern. After confirmation of his diagnosis there were no tears...its not how we roll. We asked if/when surgery would happen and how quickly we could take him home. Later that night Gillian and I made a pact: Maeson is our son, that he happens to have Down Syndrome will not define him so much as his name and how we raise him. Four years later, one scarily easy heart surgery, and almost routine moments of pure magic and unbelievable stubborness our baby boy is an amazing pre-schooler, big brother and all around super stud.

    Gillian and I don't think about the future much (still a bit too hard). I started law school a year later. Gillian keeps tab on Maeson with her fellow teachers. We are living in the moment with him. We do the buddy walks, we say hi to all the people who have beautiful kiddos who happen to have down syndrome and we take special moments to say Hi to the adults we see with Down Syndrome.

    Then I read your article about the troll. After showing my wife how absolutely gorgeous your little man is... we have thought about how to take your example and apply it in our lives. I have posted a series of "#downsyndrom is" photos on instagram, facebook and twitter. Gillian is doubling down on her efforts to buddy her classrom of self contained gifted kids with the self contained special education kids. We have been much more vocal about people around us who use the "r" word. More importantly we are raising our boy to be a well mannered, educated man of action....we just have to conquer potty training first. Thank you so much for being so brave and graceful in your family's journey. It is inspiring to many of us in the club.

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  13. Hello, I am 16 years old girl from Turkey.I read your article and looked up your posts I was honestly impressed, not only by the lesson you gave with that article but by seeing how a woman built a great family simply.
    When I see a photo of Quinn, I think about his adorableness, not his DS.I smile when I see him with a huge smiley face on photos(he mostly does have it) and I believe that he will be able to achieve many great things in his future because he's much more than some people may think.
    You have every right to be proud of both your beautiful kids.I am sending my good wishes for your family. Kiss Atticus and Quinn for me :)

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  14. As someone born with a disability I've been the target of cruelty. It has only made me stronger!
    Your son is TOO DAMN ADORABLE FOR WORDS! I have found that people with Downs are some of the most lovable children I've ever met.
    Keep up the good work of raising this ADORABLE BOY!!!

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  15. Megan....
    "And even though I pride myself in being an educated person with progressive thoughts, I was truly ignorant about the realities of Ds until Quinn came along." Call me crazy--which I am!!--but I love it when Life throws things our way to make us more humble!! ;)
    "I see Quinn's similarities to other kids his age far more than I see his differences. " It is the same thing with my Down syndrome brother, Michael!! Except for one minor thing. He has always seemed younger age-wise!! And that is okay!! Because we all love him for it!! ;-D
    Love you later, Raelyn

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    1. you are a GREAT mum and your son is beautiful! Love his smile! We would love to see more of his smile!

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  16. So I'm a 17 year old girl in New York. And I've noticed, based on the reactions of those around me, that teenagers, particularly American teenagers, are observed as the shining beacon of ignorance and self-obsession to a lot of people. Or something like that. Anyway, I've been extremely lucky my whole life. When I was about 8 I started volunteering at a therapeutic riding center called Horseability. All sorts of kids go there, and their disabilities range from invisible to glaringly obvious. I've gotten the chance to see kids with Ds (and many other disabilities) do incredible things on horseback. I've also got an aunt with Ds who my family loves very much. As a result, I have a great deal of respect for disabled children and their families, and I'm a sucker for blogs like yours.

    In my experience, I've come to the same conclusion as you - there are more similarities than differences when it comes to Down syndrome vs. "normal." Now, referring back to the teenage thing - there are a lot of kids who don't see that. Too many look at kids with visible disabilities and write them off as less than them. The level of ignorance is a clear indication that there needs to be a higher level of education for this sort of thing. I hope that your response to the Instagram troll (which was fabulous, btw) really amps up the traffic to your blog because your son Quinn is a great example of the potential every child born with Down syndrome has.

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  17. Your baby is SUPER beautiful and his light shines sooooooooo bright. He is so blessed to have such an awesome Mom and family as I know you are all blessed to have HIM. His smile makes me happy.

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  18. Megan, I came across one article of how you reply to a online bully saying your baby is ugly. I couldn't help to follow you on instagram. As your baby's smile touched my heart deeply. He is by far the most beautiful baby I've seen. Your are a strong and awesome mother. Hope God bless you and your family.

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  19. Megan,this was shared with me by a friend on my F B via phone.I would like to say I think your baby is beautiful or I guess little boys like to be called handsome. I have a cousin that was born with fluid on the brain,they caught it when she was six weeks old. She has had several shunts put in her head. Most children does not live to be grown like Angie. She is in her is in I guess her late 30's or 40's now. I don't get to see her,but have talked to her a few times via F B . She has four kids,the third one a little girl was born with down syndrome. I only got to see her one time when she was a few weeks old.unfortunately Angie's kids were taken from her. The 1st. son Frankie's Dad and family raised him.My Uncle,her Dad wound up raising the 2nd. child Jonathan and the 4th. child Lisa.The 3rd. child with the down syndromewas adopted to a wonderful couple in Richmond,Ky.The y say she is going to College at Eastern Kentucky.MYcousin told me she is a grand-mother of 2 babies now. Unfortunately she is still with the pervert that molested the child that was not his and maybe the other son, I don't know.That is why she lost them,because she would not leave the molester.He served time in the Pen for it. I also have a great great niece that is 22 yrs. old and she is on the level of a 4th. or 5th. grader.Her disabilities can't be seen,but she has been bullied. I hope I am not writing to much. My deceased Daughter and best friend died at the age of 49 yrs. old on Aug.10,2011. She was in special ed,but I incouraged her to learn to drive,and do things for her self.She taught her self about computers and was very technology smart. People even in our family used to talk about her and make remarks about her.She was taught to take up for herself.My Mama had a saying:if you don't take up for your child ,no one else will.I am telling you this because I saw the photos of your son and I think he is very handsome Baby. Stick to your guns as the old saying goes. Always take up for your child.There is another saying,what goes around comes around.God will make this Juses Crust HD pay for what he has and is doing. Megan just remember you can't fix STUPID and that is what this Juses is.He will get his judgement day and I would not want to be him when God judges him. I was taught as a child,never make fun of someone that was different than me or had less than me.I always stood up for kids that were called names or bullied.I was born Mar.12,1945. Back then kids were taught to respect others and manners. I don't know what has happened since those days.I think the devil is like my Mama said loosed on this Earth. Megan remember you can't fix stupid! I would love to be your F B F,if you would like. My name is Carolyn Gabbard/ I am 69 yrs. old and I have grand kids,great grand kids and great great grand kids. I live at 222 Potomac Dr./Georgetown,Ky.40324 Originally from Lexington,Kentucky/home of the Ky. Wildcats Basket ball team.If you need a friend to talk to my cell# is 859-699-3608 Just in case you need someone to talk to that understands.This Juses is not worth anyone's time,especially yours. Your SON is going to grow up to be a very smart and productive well mannered young man of society,where this juses will or probably has already messed his life up..That is why he is so miserable and takes it out on someone that can not defend their self,but we on F B can put his name out there of what kind of person he is. From someone who cares,hopefully your friend Carolyn Gabbard. 06/22/2014

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  20. I just found your blog after seeing your response to the cyberbully. Let me first say that Quinn is adorably handsome. I will be following your blog as we have a 5 month old with DS. We have been surrounded by family and friends who do not even "see" our sons DS, so I have been ignorant to the fact that someday my son could be the target of bullies simply because he looks different. I hope it never happens, but if it does I hope that I can respond with such dignity and self respect as you did. Thank you for your blog.

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  21. Hey
    My names JB and I'm from Germany. I work in a residential setting for people with impairments. My current group consists of twelve with different, minor disabilities. Three of them have D's and what can I say: they are great! They are so grateful for everything, even the little things and every smile they draw to me makes my work worth it. I spend a lot of time on the internet checking out how other countries support people with impairments (Germany is far behind USA in things like inclusion and education). Quinn will have a lucky life, I mean you as a mum seem so cool, no doubts on that.
    But another story: in 2010 I started working in a sheltered workshop as a volunteer. There was one guy with ds in the group next to mine. He became my best friend for a period of 3yrs. He died in 2013 because he was already pretty old. But I can say I have never met someone who honestly loved me as much as he did...

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  22. Just found your blog, Megan - I'm a prenatal diagnosis - we received our daughter's Ds news about 7 weeks ago and like all parents in this situation, we were rocked. It shook us hard, but with fantastic supporters and families who share their experiences, we've circled back to excitement [and granted, still anxiety due to her duodenal atresia and AVCD].
    Thanks for sharing your experiences to help those of us on this similar journey!

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    1. Congratulations on your baby! I remember being in your shoes so clearly and I hope that you check back in to let me know how you and your little one are doing. I've known many babies with Ds who were born with both AVCD and duodenal atresia and they are all thriving after surgery. When are you due?

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    2. I am due Sept 20th, so we're on high alert beginning Labor Day weekend - I've been told and read that many Ds babies go early - around 37/38 weeks!

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  23. Please believe me when I say this. Just because a child has downs does not mean that they can not succeed please check out Tim's place in Albuquerque. You and your family are so very lucky and be blessed with Quinn! I wish you all the best !

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  24. Very simply, Quinn is beautiful and an amazing blessing. I've been close with several families that have children with Ds and they've all just been overwhelmed with how truly special their kids are...
    In so many ways, kids with Ds are as close to perfection as it gets. All kids are different (all adults are different thankfully). We all have our positive traits and we all have areas that we need to work on....mentally and physically.
    I must confess that your blog, though inspirational, has not changed the way that I look at Ds...because I've always viewed people with Ds as amazing and exceptional. Clearly, you already know that! Quinn is incredible and so are you...

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  25. Quinn has just added to my joy, being the big sister to a beautiful brother with ds. He will be 50 years old this December, and since his birth has been one of the greatest gifts of my life. I got to help raise him until I left home, but have always continued to be a big part of his life! He calls me "the sister" even though he has 6, so I am duly honored.
    When he was born we were told all the old garbage about putting him in a home because he would never be able to do anything, etc.... my parents fired the doctor and got one who understood that he is a son and a brother and a cousin, and a truly perfect human being. He is incapable of lying, hurting anyone, or deceiving anyone. He IS capable of loving, seeing people for who they truly are, and making us all so happy to have him my heart just soars when I even think of him.
    My brother can't live on his own but he can organize everything, play 6 different stringed instruments, and memorize entire movie dialogues if he wants to. (Star Wars is his favorite!)
    He loves animals, and they love him. I love him, and instead of listing the things he can do (they don't define him either) I'll just say every time I look at Quinn's pictures I see my little brother at that age.
    You are so blessed to have Quinn. No matter what happens in your life, you will always have someone who loves you so completely you won't even have to think about it.
    That is what my brother does best - he loves completely.

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