31 days of blogging for Down syndrome awareness month… on my iPhone.
Yikes.
We don’t have a working computer these days, but I’m determined y’all. Starting tomorrow, we’re covering 31 surprises about life with Down syndrome. Please bear with me on the formatting.. and the typos.. and all of the joys that come from doing this without an actual keyboard.
If you have missed us, my apologies. I have missed you too! I have been so itchy to write, and really can’t wait to bust out of my technology-failure-induced-rut. There’s so much to say!!
For 31 days, we have shared a lot about what advocacy means to our family in our little corner of the world. On this last day, I invite you to image what if with us.
What if we stopped equating smart with successful?
What if we believed that those who are not “smart” still have something to contribute?
Imagine a mom getting a diagnosis of Down syndrome in a world where it didn’t matter if her child would be smart. What if she knew that the child would be accepted, taught, cared for, and loved regardless?
What if we presumed competence in all? And when someone doesn’t understand, what if, instead of being frustrated, we reacted with patience and love?
What if we stopped believing that a classroom of learners who struggle is a “dumping ground”?
What if we stopped encouraging families touched by disability to band together in separate places and in separate communities and just embraced everyone?
Imagine parents learning that their child has Down syndrome in a world where they knew that their schools and communities wouldn’t bar them from participating in classrooms and activities. Imagine never questioning whether your child would be allowed to participate in birthday parties, field trips, assemblies, or just in plain old school.
What if we stopped believing that the brightest are the best and instead believed that those who are joyful, humble, caring, and kind are what we need most?
What if we stopped seeing advocacy as a way of “helping the less fortunate” and instead just saw it as being a human being?
What if we stopped seeing the disabled as less-fortunate altogether?
What if we always, always chose kind?
What if we could see beauty in the differences that make each of us unique?
What if we respected people’s feelings and beliefs and didn’t walk through life with the attitude that a different perspective makes someone a bad person or less worthy of kindness and love?
What if we could stop seeing another perspective as an attack on our own thoughts and feelings?
What if we just chose love? Always.
YOU can make the difference. YOU can be the Hands and Feet. YOU can advocate in small ways, big ways, in thoughts, in actions, with money, with words, or with nothing but kindness.
I have a playlist on my iPhone called “Fight Song.” It is made up of a series of songs that I find motivational and I listen to it on my way to work every single day. It’s not that I need motivation to go to work everyday. I actually really love my job. And it’s not that I’m fighting anything or anyone in particular at all. These songs just tend to fill me up with the energy and positive feelings that I think are so important. They remind me to be brave, to be kind, and to do good.
The first song, the song I start each and every day with, is below. As a last thought, before we go back to our regularly scheduled program of family antics and less-relevant rambling, I encourage you to watch the video, listen to the words and imagine if this song could drive what you do every day.
This really IS me taking the easy way out tonight. We’re a little swamped with baseball around these parts. Instead of my usual ramblings, enjoy this nice video from Kid President:
You probably think I’m cheating a little bit at my 31 for 21 Challenge when I post videos, but there is a lot to be learned from the voices and experiences of others. You might not seek out these types of videos like I do. I hope you watch them, most especially the one below.
It is 17 minutes long. I know, it’s extensive. I promise, it’s worth every second. Because getting the message of this video means “getting” my family’s perspective. This is what we are about. This is what we are advocating for.
Is it is the same as every other family? No, most definitely not. But at home, in school, and in life, this is the cornerstone about our approach to Down syndrome. I hope you will take some time out to understand us.
You cannot advocate for the real needs of a person with a disability until you are willing to accept and understand that in all humans, behavior is communication.
Behavior IS communication.
This is so important, most especially in a world where people have more limited ability to express their thoughts and needs or those who need extra time to process what is going on.
I spoke with a group of high school students this week about Down syndrome and what it means for our family and Tessa. We spent quite some time talking about how low muscle tone affects her ability to function and how it has caused some challenges in speech. We talked what it might be like to live in a world where we could not communicate our needs.
If you remember back to Spanish class in high school, your teacher probably forced you to ask in Spanish if you had to go to the bathroom. Speaking with the students, I asked them to recall a time when they (or another student) really, really had to go, but couldn’t remember how to ask. We talked about what that looks like. The kids giggled quite a bit, thinking about the dancing and the frantic pacing and the mad dash to look up the words in the Spanish dictionary… and then we talked about what it might feel like to be that way all the time, how if you were in the grocery store and a clerk was rapid-fire asking questions (paper or plastic? debit or credit? coupons? milk in a bag?), it might be overwhelming and over time, you might develop some other coping strategies to say “slow down, I need time to think!”
When you see a behavior that doesn’t fit into the standard view of what would be “normal,” understand that the behavior is communicating some feeling or need. Patience is advocacy. Acceptance is advocacy. Love is advocacy.
There has recently been a lot of hoopla in my world about the “right” way to celebrate Down Syndrome Awareness month. Do we call attention to the disability? Do we ignore it and just show our families living “normal” lives? Do we point out the differences in our children? Do we show how they are doing all the things that typical children are doing? Do we do nothing?
All are good and valid.
I do not believe that society has moved far enough toward acceptance of individuals with intellectual and physical disabilities to ignore Down syndrome awareness efforts. I do not believe that my child should be singled out because of her disability. I do not believe that we should shy away from any opportunity that would “normalize” the life that we lead. I do not believe that our life is normal. Whose life is normal?
I like to wear the colors – I like to have fun with awareness and buy goofy t-shirts and give people a reason to ask questions, So I like things like these little gems. And if you like them too, you can find them and buy them and wear them. Links to their respective “stores” are included:
Don’t say it. Don’t avoid calling others out on it when they say it.
There are people who will try to make you feel really bad about telling them to stop using the R word. They will tell you that you are too sensitive and they mean nothing by it and that people these days need to “lighten up.”
In the Down syndrome community, great effort is made to help the world see our children first. There are pros and cons to having a visible disability. On the positive side, people recognize that you may need help. On the negative, people assume that you need help. It’s a double-edged sword.
People-first language establishes that an individual is defined as a person before any particular diagnosis. It means calling Tessa “a child with Down syndrome” and not a “Downs child.”
I have to assert here that we are talking about the Down syndrome community. Other communities (for example, the Autistic community) have a different viewpoint.
To me though, people-first language means dropping the label altogether as often as possible. I realize that there are times when her diagnosis needs to be communicated and referred to. I’m not in the business of pretending that it isn’t there. However, in my mind, person-first language goes beyond saying “a child with Down syndrome” and just saying “a child.” An example…. humor me here, please…
Say you run into Tessa and I in a Panera. She’s her usual ham of a self, giving you high-fives and blowing kisses.
“Wow!” you might respond, “what a sweet little Downs baby!”
or maybe “Wow! What a sweet little baby with Down syndrome!”
or perhaps “Wow, what a sweet little baby!”
In the Down syndrome community, our preference would be choice three.
But, shhhh, I’ll tell you a little secret. If you mean no harm, I’m not going to correct you on any of it.
I’ll be the first to recognize that for the standard human, there are a lot of rules to follow from a variety of communities who all just want what is best for their members. My plea tonight is not just to those who are not directly tied to the Ds community, but to our own members as well. Fight the battles worth fighting. Make a point to teach a lesson when you can make a difference. Use love and example and above all else, be patient with those who are learning.
If the person is being blatantly rude just to be an ass, by all means, have at them.
But otherwise, lead by example. People first, if you would please.
Yo soy La Lay 