Being a Down syndrome advocate is a way of life.

There are few people in this world that choose to advocate for others, such as those with Down syndrome, without some strong connection to the disability. I mean this in a relative sense as compared to other. It think it would be interesting to know this statistic but I don’t know what the number is and cannot actually verify my statement as fact. I am going on my own anecdotal experience it believe the statement to be true. Most advocates are like myself – forced into the role out of a desire to protect a loved-one from unnecessary hurt. Another characteristic of this group in which I belong is a sense of guilt we feel for the indifference that characterized us in our former lives.

Stay away from binge diets.

I have never been accused of being small, “fine-framed,” or petite in any sense of the word. Nope. I was the kid that would wear “Husky” brand jeans and polite adults would refer to as “healthy” or “big-boned.” My older brother used to tell me that, “You are what you eat,” as he handed me a Chunky candy as we waited with my mom in the checkout line at the grocery store. 

However, I also was not a considered overweight. I was very athletic and always involved in sports; I was just a big kid. The problem is that now I am a big man. A 40 year-old man who is no longer involved in sports and sits at a desk at work. I need to lose some weight and if binge diets worked I would not have a problem. I can do just about anything for a limited period of time. The problem is that to be truly healthy requires a lifestyle change.

The same goes for being an advocate – you are not going to make much of a difference by making an effort every other day. However, like learning to be more healthy, you don’t have to make huge changes. You start small and focus on small things, making smart choices about what you eat or maybe how you phrase your statements, the order of your descriptors.

People first language is a great place to begin.

I have three beautiful daughters and a handsome son. My son Treyton was born with an extra-copy of the 21st chromosome which earned him the diagnosis of Trisomy 21 (Down syndrome). So I have a son that has Down syndrome (or some may say he has Downs) but I do not have a “Downs son.”

For me, it is about shifting the narrative. Every day, every single one of us participates in a collective narrative. Every word we choose becomes part of this narrative.
Jisun, KimchiLatkes.com

Language is like the bridle on a horse; when the bit is placed in the mouth of the horse the rider can control the direction the horse travels. From the little experience I have with horses I know that it takes a little while for the horse to get accustomed to the device but after some time it feels natural.

The same goes for our language. The words we choose say a lot about our attitudes. As a parent to a child with Down syndrome this lesson hit me hard and fast, like a ton of bricks. I try to be patient with others but I cannot sit back and allow others to use speech that reduces my son to a diagnosis.

W.W.T.N.D.

Do you agree that we should all be like Tom? Come on I know you do. Oh, you don’t know who Tom is? Tom Petty of course. Let’s sing, all together now!

(I won’t back down…)
Hey baby, there ain’t no easy way out
(and I won’t back down…)
hey I will stand my ground and I won’t back down
Well I know what’s right, I got just one life
in a world that keeps on pushin me around
but I’ll stand my ground
…and I won’t back down

(I won’t back down…)
Hey baby, there ain’t no easy way out
(and I won’t back down…)
hey I will stand my ground
(I won’t back down)
and I won’t back down…
Tom Petty, I Won’t Back Down

When I read the post “She Talks Funny” at Whac-A-Mole-Life certain thinks resonated with me. I can’t necessarily say I have been in the same situation but there sure was a familiar feeling to what I read. It can be exhausting. At times it feels like you can’t relax because you are so aware of people around you.

When you find yourself in a situation like this I want you to stop and ask yourself, “W.W.T.N.D., What would Tom not do?” Usually we ask what a person would do but I don’t know Tom and don’t know what he would do (maybe smoke a joint?). However, thanks to his song we know he would not back down.

Bullet with butterfly wings.

Sometimes when I write my mind goes and I try to keep up. Right not I am on this music path and if you ever need a song to help burn off some steam, you know the type of song. Check-out the song “Bullet With Butterfly Wings” by the Smashing Pumpkins. I love the part that says, “Despite all my rage I am still just a rat in a cage.” Good stuff when you are feeling pissed off. Bad stuff when you want to be level-headed!

It was a year ago today that I wrote the post called “How to Change the World Like a Butterfly.” It was based on a book about leadership that I discovered during my graduate studies in business and focused on dynamic relationships. It essentially shows that a Newtonian View of the world as simply a sum of parts is outdated, that there is something dynamic that occurs between people and within systems that make the “whole” greater than just a sum of its parts.

This is something we all need to remember. Your role as an advocate as well as my role is more than what we do as individuals, there is a dynamic relationship of which we are all a part. In this relationship the butterfly effect is real. Your actions, your words, my actions, my words, create a ripple that spreads. Neither of us can tell for sure the final outcome of our actions but we can help to make sure we create those waves.

Everyday advocacy

Advocacy on a daily basis does not look too radical for me. It is using people first language and helping others to see how important that is. It is being bold enough to correct others when they make assumptions about my son’s abilities. It is reminding the doctor that even though many people with Down syndrome have similar health issues he is dealing with my son and his name is Treyton.

Everyday advocacy involves taking my son to the store or playground. It is bragging about his accomplishments and expressing concern about struggles. It is showing people that having a child with a disability is OK, that my son is kick-ass. Everyday advocacy is living life and being bold enough to stand-my-ground but also not making an issue of things that are not big deals. Advocacy needs to be natural, an everyday part of life.

This post is part of a Blog Hop at Down syndrome Uprising.

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