The Big Myth about Down Syndrome – and how new Dads can shatter it. 49


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As a Dad who just learned your child has Down Syndrome, you will hear this myth everywhere: Down Syndrome is a devastating and painful diagnosis that will turn a parent’s life upside down forever.

* It’s in the literature. In a book titled: “Babies with Down Syndrome: A New Parents’ Guide, the first sentence of the Chapter “Adjusting To Your Baby” says: “It is painful beyond belief to be told that your precious new baby has Down Syndrome.” 

* It’s in the doctor’s words of sorrow and apology; in fact, Doctors need booklets to “gently” deliver a Down Syndrome diagnosis.

* It’s in mainstream media stories about Down Syndrome.

* It’s in the voices of friends and family who say “I’m sorry” on your happiest day: the day you become a Daddy (again?).

* It’s in nearly every “welcome message” from other parents.

Like the monkeys in the cage, nobody really knows why these beliefs persist.  Doom and Gloom at the diagnosis of Down Syndrome? That’s just how it’s always been done.

Here’s the problem, though: the Big Myth of Down Syndrome Doom and Gloom is a steamy warm pile of bullshit.

Here are my 6 Steps to debunking the Big Myth:

Step 1: CTFD.

David Vienna at The Daddy Complex has recently published a new Parenting Model that is catching the nation by storm.  It’s called “CTFD“.

CTFD is a  practical technique that works GREAT when you learn your child has been diagnosed with Down Syndrome.

Step 2: Get Some Perspective.

Let’s get some perspective on what would be truly “devastating” or “painful beyond belief”:

* Finding out your precious new baby was stillborn.

* Being forced to watch your wife undergo a mandatory abortion because the baby is a girl. (The inevitable result of giving government a toe-hold in the uterus).

*Learning your precious newborn baby was slaughtered in a mass ethnic genocide.

A diagnosis of Down Syndrome? For parent or baby, it doesn’t even  approach “pain beyond belief”.

Step 3: Confront Reality.

Now that we have a realistic idea of what is and is not painful, let’s confront the unavoidable reality that people with Down Syndrome can have lives just like the rest of us:

Tim Farris owns and manages a profitable restaurant in Albuquerque, New Mexico.

Andrew Banar runs a successful and profitable business: his T-shirt designs are taking the US and Canada by storm.

Lauren Potter is an actress in a major TV show – Glee. She tackles major social issues through her acting.

Eli Reimer, a 16 year old, climbed Mt. Everest.

Ashley DeRamus has started a clothing line and designer label for folks with Down Syndrome.

These stories aren’t “inspiration porn”.  They are evidence that the gloom and doom of Down Syndrome is a mirage.

Don’t believe me: let high-school student Joey Kane tell you.

Step 4:  Think It Over.

Think over these 2 questions:

1) If people with Down Syndrome can do what we all can do, why should anyone feel “despair” about having a child with Down Syndrome?

2) When the “feel-bad” crowd concludes, years later, that having a child with Down Syndrome was the best thing that happened to them, aren’t they really saying there is no need for you to feel despair?

Step 5: Write a new script.

Here is my script. Feel free to borrow it or write your own.

* Down Syndrome can not – and will not – stop me from believing in my son, supporting my son, or raising my son to the best of my ability.

* I choose to feel good about my son’s future, Down Syndrome or not.

It’s okay to be scared – some of the complications that coincide with Down Syndrome are fucking scary.  It’s okay to be overwhelmed: there is a lot to learn about Down Syndrome.  There will also be a lot of work, and there is going to be some extra cost. 

But being a Dad is always a lot of work and always has a steep learning curve:  whether its your  first baby, your fourth baby, or your Downs baby.     

Want to feel sorry for yourself?  That’s fine, we all have a Pity Party from time to time.  Be sure to talk to a friend, work it out and move on.  No need to perpetuate the Big Myth.   

There really is no need for a New or Expecting Dad to hang his head, gnash his teeth, wail or otherwise mourn the diagnosis of Down Syndrome.  

We have lost nothing.  To the contrary we gain the world.

Step 6: Join Me on a Brighter Path.

New or Expecting Dads: will you join me on the path of sunshine and reject the path of gloom?

Say it out loud:

I’m a Daddy, and my new baby is awesome.  The Down Syndrome part? It just doesn’t matter.

Related Posts from parents who are okay with Down Syndrome:

The Words  Every New Dad Should Hear (Thank you, Mark Leach!): “Down Syndrome is not incompatible with life. ENJOY YOUR BABY.”

In the World (Blog: “A Typical Son”).

I’m Just a Mom – Not a “Special Needs Mom” (Blog “Life as We Know It: Not another Mommy Blog”).

Down Syndrome and Parenting: What’s It Like? (Blog: “Treyton’s Posse“).

How our Newborn with Down Syndrome Changed our Lives: For the Better. (Blog: NoahsDad.com)

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49 thoughts on “The Big Myth about Down Syndrome – and how new Dads can shatter it.

  • Reply
    notatypicalmom

    Yes to not perpetuating the myth! About 50% of the time I don’t even write about Ds. I am a parent. I have a kid. Same old same old.

  • Reply
    Mardra

    YEAH!
    One thing I advised a parent the other day, “Did you worry about your other children’s teen and high school years in the first few days of their life? No? Then don’t with this one either. Enjoy her, love her, and dote on her. She will grow up to be who she is supposed to be.”

  • Reply
    meandmysarcasm

    This is incredibly enlightening. There are different degrees of Downs Syndrome. My sister can’t talk, apart from the odd word, and she’s incredibly in control of what our family does (she doesn’t like heights, or go to the toilet all the time or stay in bed at night), but there are some kids who are better or worse than my sister. We know children who go out and talk, get jobs, live independently and even have relationships. In contrast to that, I know one child who refuses to go to school or even leave the house.

    However, there is always too much negativity surrounding Downs Syndrome and too often there’s someone telling potential parents to abort a baby because of it. They need to know both the good and the bad before making an educated decision, and I think this blog post does that rather well.

  • Reply
    Hope

    I have been honored to work with several Downs children in my life. As a their teacher and teaching assistant, I have been the student learning from these amazing children. Oh the smiles and laughter we shared. I had one child that lost the last 15 minutes at the zoo because he pulled away from me and an autistic student and ran across the zoo train tracks, in front of the train. I had to wait for the train to pass to see him standing there waving at all the passengers. When I told him that was not appropriate and he could have been badly hurt he called me a b—-. I found another teacher to give the autistic child to and my downs and I went to the bus. As I tried to explain why, he called me B— again. I took away his ta lking priviledges until he calmed down. Once we wete back at the school all the students filed off the bus, this little guy (these were 9th gradrers) went straight to his desk and put his head down. My heart was breaking. I had to take care of my autistic student, went I came back in the room my downs came up to me smiling. And handed me a picture he had drawn. It was he and I holding hands at the zoo. He wrote “I love you Miss ———”. My heart grew several sizes as he taught me abought forgiveness and unconditional love. The truly are the most beautiful children it does not take much to see that. Oh the funny memories I have with “my kids”. Thanks for helping me remember! ~Hope

  • Reply
    claudia rpobinson

    My gosh!! I have never loved anyone so much as much as I love my daughter. To me she is just the most Awesome!!! sensible!! loving!! giving!! down to earth!! and the list goes on. You will never easily find this in one person alone. That is why she is sooo special

  • Reply
    Jonathan

    I love the upbeat focus you have in this post and the way you challenge so many unhelpful social conventions.The stories that you linked to in step 3 are so inspiring.

    • Reply
      Little Bird's Dad

      Thanks for the positive feedback.

      I heard a mother speak at a seminar last night, and she told us how her son’s teacher had once said that the best her son could hope for, as a child with Down Syndrome, was to be a greeter at Walmart. (wtf!?!)

      I hope that teacher is able to find the stories of the men and women in Step 3 to see just how wrong she is/was.

      LBD

      • Reply
        Jonathan

        I’ve heard people say similar things to that teacher unfortunately. I remember being on a Welsh language course and there being an adult in the class who appeared to have some sort of learning difficulties. Somebody said at the break that he should be doing some sort of activity such as painting rather than learning Welsh.

        He may not have been able to do everything at the same pace as the rest of the group, which affected the group dynamics and perhaps made things a bit more challenging for the tutor, but it wasn’t like he was really disruptive. All that was needed was a bit more patience from everyone else in the class, and thankfully people were generally very good at being patient with him.

  • Reply
    indyink

    If this hasn’t already made it to Freshly Pressed, I hope it does. I always wondered how parents felt about this, especially since some of the greatest folks I’ve ever known have Down’s Syndrome.

    Great job expressing this and giving us an education.

    Indy

  • Reply
    Marigold

    i don’t have a child with Down Syndrome but I had a daughter who passed away over a year ago. Yeah, you’re right, having a child with DS does not even approach “pain beyond belief.” It doesn’t matter if the child is normal or special, as long as he/she is with us, then that’s enough.

    Btw, thank you very much for following me and liking my post. It’s really a great help for a new blogger like me.

    • Reply
      Little Bird's Dad

      I am so sorry for your loss; words cannot even express.

      Your blog is unique, well-written, and visually appealing – what’s NOT to follow. ;) For the record, I love the first photo in the post about the BenCab museum.

      Peace,
      LBD

      • Reply
        Marigold

        :) Thankfully, we’ve managed to move on with the help of prayers, friends, and even acquaintances.

        And thank you for the kind words. It makes me so happy to be appreciated.

        I love that chair too. There were a couple more like it at the museum but with different designs.

  • Reply
    oregondomesticated

    I have several friends with Down syndrome siblings or children and although they present different challenges to those involved, they present just as many challenges as undiagnosed kids do. Different needs, different tools, yes, and the unknown is scary. BUT it’s not a death sentence. It’s a gift. Makes ya step outside the box.

    • Reply
      Little Bird's Dad

      Amen to that! It’s most definitely not a death sentence, and I’m going to tell you this week about a young woman with Down Syndrome that has achieved something that very few people have!

      Stay tuned, and thanks for posting!

      Peace,
      LBD

  • Reply
    pokokitty

    Thank you for liking and commenting on my post “the upside of downs”
    I love what you have said here. It is great to hear the side of the dad for once, usually it is from the mum’s side. I will be writing more of my own experiences with my daughter with DS. But, was a little appalled at the number of people who would come up to me sad and crying during my pregnancy saying how sorry they were. My baby wasn’t dead for God’s sake. I was sad enough, don’t tell me you are sorry like we need to attend her funeral. I wish people would have just kept their comments to themselves, I think they felt they had to say something. I also was a little offended the doc asked if i wanted an abortion. I was almost 19 wks pregnant. She was kicking and wiggling. She said she was required to ask. There is so much thinking out there about DS that needs to be changed, so much these kids can accomplish. People just have to treat them like any other human and give them a chance. Thanks for that great blog.

  • Reply
    ginjuh

    I have worked with lots of kids with Downs as a speech therapist. We are lead to believe they are all like one another, but what I find is how strikingly similar they are to their parents (as oppose to how much they are like one another). The outgoing ones belong to outgoing parents, the wound-up ones have neurotic parents… and this is really the case with kids in general.