Yo soy La Lay

adventures in family, faith, and Down syndrome

Advocacy #11: LISTEN!!!

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.

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Advocacy #10: Accept that Behavior = Communication

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.

Happy Saturday!

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Advocacy #9: LISTEN.

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Advocacy #8: Sport the colors

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:

From The Littlest Warrior, cute shirts like this for the kiddos…

Chromosomally Enhanced tee in blue with yellow ink

And adults…

 Women's Warrior Mama tank in light grey

For jewelry, I love Etsy.  Search “down syndrome” and you’ll find lots of cool stuff like these:

(I have this first one and LOVE it)

Stunning DOWN SYNDROME AWARENESS Bracelet - Custom made jewelry.

Down Syndrome Awareness Necklace Sterling Silver Hand Stamped DOWN RIGHT PERFECT

Royal Blue and Yellow Chevron "Buddy Walk" Team Down Syndrome Awareness Scarf Jersey Knit Infinity Tammy Lynns Creations

You can also shop the stores of some really great groups, like the shop through the NDSS.

Advocacy through fashion… I like it!  🙂

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Advocacy #7: Listen

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Advocacy #6: MAKE IT STOP!

The R word.

I mean, seriously.

It’s 2015.

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.”

Be tough. Be strong.  Be brave.

Keep fighting.

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Advocacy #5: Use people-first language

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.

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31 for 21 Day 4: A little off the topic of advocacy

We interrupt this regularly scheduled program to share an exciting morning.  Our thoughts on advocacy will continue tomorrow, but I thought it was important to share that Tessa and I had our first conversation this morning.

At an unreasonable hour (5:56 am), Tessa was being quite loud in her crib, so we took her out and made her crawl around in bed with Mom and Dad.  After about half an hour, she got a little restless.

(All words were signed and spoken by me.  Tessa spoke “down” but just signed the rest.)

Tessa:  Da… Da… Da!  (down)

Me: Oh, you want to get down from the bed?

Tessa: Da. (points forcefully at the door)

Me:  Downstairs??  No, wait.

Tessa: Da. Eat. Milk.

Me: No, wait. No milk, no eat.  Wait.

Tessa: Cookie.

Me: Wait.  No cookie.  Wait.

(pause)

Tessa: Cookie please.

BOOM.  Tessa for the win.

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Advocacy #3: Give us a smile

con·spic·u·ous

kənˈspikyo͞oəs/

adjective

1. standing out so as to be clearly visible.

2. attracting notice or attention.

synonyms: easily seen, clear, visible, noticeable, discernible, perceptible, detectable; person with Down syndrome

^

That’s reality right now.  Not that everyone in the room notices us, but that everyone in the room who does notice us can see that we are different.

We have run the gamut of responses to Down syndrome (remember this guy??).  Not all responses are negative.  Most, in fact, are quite benign, even a little sweet.  And they bring me to another little way that you can advocate for people with Down syndrome: smile.

Smile at everyone you meet on the street.  Good or bad, rich or poor, sick, healthy, clean, dirty, happy or sad.  A smile says “Hey, I see you, human being.”  I’m not saying you should fawn over every individual that crosses your path, nor should you go out of your way to grin awkwardly at someone who is different.  I’m saying that it is pretty cool if you let your eyes meet someone else’s (anyone else’sand allow yourself to smile.  And though you may think it far-fetched, it’s advocacy at its finest.

You see, when you share a smile with the differently-abled, the marginalized, those on the outskirts, it’s not really about them, it’s about the others in the room.  It’s about showing the world that it’s cool to be cool with everyone.  When you treat everyone who looks a little different with the same dignity and respect as you would that nice-looking, decently dressed human being walking toward you in the grocery store, it sends a message.

We are all humans.  Advocate for the humans by smiling kindly at the humans.  You can’t go wrong with that.

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Advocacy #2: Donate

Can we just get this one out of the way?  It’s uncomfortable for me, it’s probably uncomfortable for you, but it’s advocacy with minimal effort and on a Friday night after Homecoming Week, it’s what you get.

Here is a cute picture to distract you from the awkwardness of this post:

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In all seriousness, I would urge you to carefully consider which charities you choose when sending in donations.  Some groups spend a lot of money on staff and publications and little on the cause itself.  Others promote ideas that do much more harm than good (Autism Speaks, I’m calling you out).  We have our own favorite Down syndrome charities and groups (listed below) that support our own viewpoint and mission for Tessa.  There are others, but these are the ones that we feel best support inclusion and advocacy for individuals with Down syndrome:

National Groups:

National Down Syndrome Society –  http://www.ndss.org/About-NDSS/Mission-Vision/

National Down Syndrome Congress – http://www.ndsccenter.org/mission-and-history

The Down Syndrome Diagnosis Network – http://www.dsdiagnosisnetwork.org/

Local to Illinois/Chicagoland:

National Association for Down Syndrome: http://www.nads.org/about-us/

UPS for DownS: http://www.upsfordowns.org

One more for those who are into medical research and treatment (I’m still undecided):

The LuMind Foundation – http://www.lumindfoundation.org/

Happy Donating!  🙂

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