Down syndrome from a father's perspective.

The Down syndrome diagnosis can conjure images of hope and joy for new parents.

Parents need to know it is going to be okay.

The thought that some expectant parents may choose to terminate a pregnancy because they are told their unborn child has Down syndrome is upsetting to me. I know the fear and confusion new parents can experience when they are told that the child they have been waiting has an extra-chromosome. I want to help new parents understand that it is going to be okay but I cannot do that alone.

A conversation with Leigh Ann.

The other night my wife looked up from her iPad and said to me, “One of the things that concerns me is how to communicate to new parents that having a kid with Down syndrome is okay? That it is not going to be what they think? It is not easy for them to find positive information.”

I need to be honest and tell you that I was a little offended by this question which is why I responded, “We need to keep doing what I am already doing, we tell others about our own experience.”

Then she said, “Well, when they Google “Down syndrome” they are not going to get Treyton’s Posse.”

So, even more offended, I said, “Well, I do know about SEO (search engine optimization) and I am working on improving my rankings.”

And she replied, “I mean what about in the doctor’s office where they are told about the disability? You know like in a pamphlet?” That is when I had to admit that it was going to take a lot more than me.

A one-man brainstorm.

That conversation stuck with me for a few days. I continued to ruminate. I really hate the idea of parents thinking it is such a terrible thing to have a child with Down syndrome, it’s not. My kid is awesome!

One of the three key reasons I have listed for starting this blog was to help others that are headed down the same journey as me. As I have spent time thinking about the issue I tried to identify the reasons that people feel so badly about Down syndrome. What is the cause of the hopeless feeling that comes with the diagnosis?

After considering some of the reasons people (all of us) tend to have such negative feelings I tried to figure out why. What are the barriers standing in the way of hope? My initial thought is that everything comes back to information. Whether it is something to read or a life experience, information is key.

If only people could meet Treyton.

If you have not been down this path you are going to need to use your imagination, let me help you.

Imagine you are expecting a child. It may be your first, second, or third, it doesn’t really matter but, for the sake of this story, let’s say you have two daughters and are looking forward to having a son. The pregnancy was relatively uneventful and now you are on your way to the hospital. You can’t help but think about baseball games, fishing trips, and vases full of dandelions – things you would expect from a son. But then you are informed that your precious baby boy has something called Down syndrome, that he has an extra-copy of a chromosome and has a result he has this disability.

What now? What does this mean? You cannot help but try to visualize what it will be like to have a kid with Down syndrome. You think back to a chance encounter or two that you had when you were a kid. “Will my son be like that?” you wonder. Then you think about that one T.V. show, Life Goes On. That kid had Down syndrome and he seemed O.K. Then you think to yourself, “Is that what I was dreaming about? A kid that is ok?”

Treyton loves the playground zip-lineConsider the child that is scared of the dark. In reality the dark is not the issue, it is what the dark is hiding that really scares him. The child’s imagination kicks into overdrive and begins to conjure up images of monsters ready to pounce! It is an unfortunate aspect of human nature that causes us to imagine only bad things in the dark. Why doesn’t the child imagine something nice? Just because we are adults does not mean we have out grown this character flaw.

Human nature is not the only cause, ignorance needs to get some credit. Most people are clueless about Down syndrome and we all fear the unknown like a child fears the dark. We don’t have a library of positive images about Down syndrome from which he can borrow –  images that allow us to imagine a happy future.

What was your previous experience? Mine was next to zero. In fact all I really had to go on was Corky from Life Goes On. It is not that this television character was a bad example, the issue is that such limited experiences forces a person to believe that this is the only future for a person with Down syndrome.

In essence, people feel hopeless because they don’t know Treyton. They don’t know how amazing he is. (Feel free to enter the name of any other kick-ass kid with Down syndrome). When they think of the chromosomal disorder they have to rely on their past experience with people who have the disability and they don’t have a lot from which to choose.

Ich bin ein Berliner

Do you know what famous person said, “Ich bin ein Berliner,” in a 1963 speech in West Berlin? Sadly I did not until I watched The Amazing Race last Sunday! I really do not watch a lot of television but it may seem that way because my mind tends to make crazy connections between things. In this case it is connecting the fight against communist oppression and the fight against the prejudice faced by people with intellectual disabilities.

When I was asked about the one thing I would change in this world I did not say I would eliminate Down syndrome; I wanted to eliminate the prejudice that hurts people with Down syndrome. If that wish were granted new parents would not have the struggle they currently have. But, it hasn’t been granted so we are stuck in this current reality. We need to break down those walls the hard way.

Freedom is indivisible, and when one man is enslaved, all are not free.

John F. Kennedy
West Berlin, June 26, 1963
“Ich bin ein Berliner” Speech

The best way to show new parents that having a baby born with Down syndrome is a blessing is to provide real-world examples. We need to advocate to have individuals with Down syndrome placed in roles that are more visible in society, this is not an easy task. This can be as big as including these individuals in corporate marketing campaigns like Target has done recently or even television. But it can also be as simple as being active in the playing little league, an inclusive classroom, or simply providing your child with the opportunity to interact with typically developing kids while you interact with their parents.

Breaking the stereotypes that are so ingrained in our culture is not going to happen quickly. It is something that has been going on for some time and now it is our turn to make sure to keep the momentum and hopefully add to it. Have you talked to parents that have an older child with Down syndrome? Maybe around the age of 30? It was a different world back then for people with Down syndrome. At that point it was still common for doctors to recommend institutions. I have a hard time comprehending the ignorance behind that type of thinking. Thankfully we don’t have to fight that but we still have a long way to go.

Pick your battles.

There is only so much we can control when it comes to creating opportunities for people to interact with individuals with Down syndrome. I am convinced that doing so will have the greatest impact on people but the number of encounters will sporadic and difficult to ensure. As a result I believe we need to look for ways to impact the types of information available to new parents.

The first thing we need to do is whatever comes natural to you. You won’t be able to sustain any level of effort and impact doing something that is contrived. For me and a lot of you reading this post it was natural to blog about your experiences. But look for other ways as well. Get involved with your local Down syndrome association – they play an important role. My wife and I both completed the training required to be part of a parent-to-parent mentoring program. But even simply going to different functions organized the the association will give you the chance to interact with new parents that are going through the same thing you have gone through.

I cannot tell you what you should be doing but I will say you should be doing something to help the world see that people with Down syndrome are valuable to our society. Like anyone, these individuals add depth, character, and variety to our culture. They are four-leaf clovers that need to be treasured as the unique gifts from God that they are.

Please join with Treyton’s Posse in this work of knocking down walls. You get to decide how you go about it, just do something. The real challenge is going to be to make an impact in the general society as well as the Down syndrome community. Look to organizations like the International Down Syndrome Coalition; one of the things they are doing is getting billboards put up that show the joy of raising a child with Down syndrome as well as simply creating a positive image. If you are still a little reluctant about all of this and need some more motivation think about Ethan Saylor. I don’t think he would have died if those security guards had more respect for individuals with intellectual disabilities.

International Down Syndrome Coalition billboard in conjunction with Changing The Face of Beauty

Rob Arnold has been married to his high school sweetheart for almost 19 years. Together they have three daughters and one son. He earned his bachelor's degree in General Business from Grand Valley State University as well as an MBA in Strategic Management from Davenport University. He enjoys reading, hunting, scuba diving, and spending time with his family.
  1. Anna Theurer

    Spot on, Papa Bear! “The best way to show new parents that having a baby born with Down syndrome is a blessing is to provide real-world examples.” I could not agree more. When Ellie was first born, I took her to a playgroup for kids her age (yeah, I know she was a week old. it was a playgroup for those born in 2009). I later ran the playgroup. For many, Ellie was the first baby they had ever seen with Down syndrome. The parents asked questions and they cheered when Bear learned to crawl, to walk, to sign. The kids played together. When new members joined, they learned the awesomeness of Ellie. Eventually, many of these mothers became pregnant with their 2nd and 3rd child and they told me that they didn’t fear Ds anymore. I think that things are slowly improving.

    When Ellie was born, my father said to me “well, you just bring her everywhere with you. on vacations. to restaurants”. I thought “no kidding dad! why wouldn’t I take her everywhere?!”. The thing is, my father’s sister (my aunt) was born in 1958. A time when people with Ds were still placed in institutions. My grandparents pioneered the say and they made sure Peggy was not “hidden away”. I don’t know if they made an impact on the general society, but they made a huge impact on my father and in turn on me. Let us all join Treyton’s Posse and knock down some walls!

    Btw, I am going to need you to teach me about SEO!

    • Rob Arnold

      Cool story. That was brave for you to bring your baby to that group, I know a lot of mom’s would not have been ready to do that. But because you did you certainly made an impact with those mom’s and I promise you that impact continues today!

      As far as SEO I would be happy to answer any questions I can.

      Sincerely,
      Rob.

  2. Anna

    Yes!!! Great post!! You write with such logic and you make so much sense!

    • Rob Arnold

      The nice thing about writing is that we can think things through, take time to choose our words, and take a step back. We can’t do that in real life but hopefully by writing, reading, and commenting on each other’s posts we will begin to see a difference in our lives. These are very emotional issues.

      Rob

  3. Crystal Staley

    My world was rocked 10 months ago when my son was born with Down syndrome. It threw me for a loop to say the very least, those early days were tough. I realized that I didn’t know a thing about Down syndrome. After a few months had passed, I started reading blogs, actually googling ‘down syndrome blogs’ and came across all these families with kids like mine! I can’t tell you how much this helped me. So keep it up because you are reaching people!

    • Rob Arnold

      Thank you for sharing part of your story and the encouragement as well. I do get excited when I hear that what I am doing is helping people. And yes, there are a lot of us that have been impacted by Down syndrome and you should never feel alone.

      Rob

  4. Andrea Thomas

    I was so happy to read your thoughts. I too have been too often upset about negative attitudes about my son’s condition for nearly 10 years. I think to change peoples pre-conceptions about DS is the most important thing we can all do. These individuals are truly wonderful, amazing people. What we have to remember is that we are evolving in the right way. The more we work in telling truth of the actuality of having a person with DS in our families the better. We are the chosen ones, blessed by the pure joy of having a child with DS. So sad that too many don’t realise that. Please look at a documentary film put out by ‘World Down Syndrome Congress 2015′. The film is named ‘Indelible’ and it really is an inspiration!

    • Rob Arnold

      Thank you for your input. I will have to check out that film.

  5. Pingback: Being a Down syndrome advocate is a way of life. | Treyton's Posse

  6. Jane Arnold

    I so agree with Andrea! I truly believe that parents who have a child born with DS, have been chosen by God to show others without DS, what a blessing these children are to their families and neighbors. Yes, I am “blessed with the pure joy of having a (grand) child with DS” as Andrea has stated. Keep up the good work, Son! Leigh does have a point about letting others know your experience with having a child with DS maybe through a pamphlet placed throughout these Doctor’s officies. Between the two of you, you could print something helpful, informative, and wonderful.