Tuesday, October 31, 2017

10 Thoughts About Down Syndrome

Over the last few days, I have realized something rather shocking.

Not once over the past month have I uttered the words, "Down syndrome awareness month". At least not that I remember?

I used to post at least once a day, saying this phrase over and over again. But this year...not at all. Why?

It's not that I've stopped believing in the awareness month. Not at all. It's just that every single thing (almost) that I post throughout the year is for Down syndrome awareness, so I guess I just didn't think to add the tag.

But here on the last day of Down syndrome awareness month, I want to share some thoughts on Down syndrome:

1. Down syndrome is the diagnosis that blew my life apart...and then put it back together piece by piece...making it so much better than the original.
2. Down syndrome ushered me into new motherhood. It gave me my perfect daughter, Addison.

3. Down syndrome taught me how to love. How to live.
4. Down syndrome showed me my selfishness in a new way. It cracked open my heart, poured out all my preconceived notions about motherhood, and filled it with new perspective.

5. Down syndrome made me question the words, "Normal" and "Different" and understand that perhaps the two are really the same thing.
6. The thing that has surprised me the most about Down syndrome (I am ashamed to say this) is how seriously smart and bright Addison is. Don't underestimate this girl!!! She amazes me daily with her antics and understandings and brilliant chocolate crafting strategies.
7. Down syndrome has demonstrated perseverance to me in a way I previously couldn't even comprehend. From fighting to become healthy to fighting to walk to fighting to read...Addison doesn't stop trying and she puts me to shame in the working hard department. I have learned so much from her.
8. What do I dislike the most about Down syndrome? The way people hear those words and assume a million things (just like I used to before Addison...see #6). I've learned that you really can't assume anything. Raise expectations and prepare to be surprised by awesome achievement and a fun, individual personality.
9. Has Down syndrome changed the way I parent my other three? I would say definitely yes. It's funny that I tend to be more accepting of Addison's uniqueness than theirs sometimes. I catch myself doing this and shift my perspective as needed.
10. This Down syndrome parenting journey is scary, amazing, unique, joy-filled, sometimes frustrating, sometimes awe-inspiring, mostly awesome. But most importantly, the DS parenting journey is about taking a backseat and letting Addison take control over what Down syndrome means.  It's not about my perceptions of Down syndrome. It's about me supporting her.
I am so proud of my girl. The thought of her smile makes my heart burst. The thought of her announcing this morning, "I Katerina...NOT ADDISON." as she made plans for dressing up tonight...makes me laugh. It is a delight to be her mother. It is a joy and a privilege to have someone with Down syndrome in my life.
I am grateful to be traveling this path. I am grateful for the intricate design by a heavenly father who perfectly created Down syndrome. I am grateful for...perfectly Addison. I wouldn't change her for the world.

Thursday, October 26, 2017

You Are Saying It Wrong

I'm most likely going to get into deep trouble for this post. In fact, I might not even publish it.

But I am struggling with this and just can't let it go until I attempt to phrase out why.

Here's the deal: sometimes I think that in an attempt to advocate for our kids with disability, we end up isolating our kiddos (and us) even more. Because ultimately there's a difference between showing life with disability and genuinely letting people into our world in order to understand it better...and standing on a soapbox and preaching exactly what people can and cannot say in regards to us and our children.

I've seen this happen (and have done it myself so many times) in regards to people first language. People first language is placing the reference to the child before the reference to the disability. Child with Down syndrome vs Down syndrome child.

I don't disagree with people first language. Quite the contrary, I think it's important on multiple levels. But when we make the exact phrasing more important than letting people love our kids the best they know how (everyone has to start somewhere), that is where I have a problem.

Stranger in the grocery store, genuinely wanting to interact: "Oh your little Down syndrome baby is so cute!"
Parent: "How offensive! That's BABY with Down syndrome, you monster! How COULD YOU BE SO INSENSITIVE AS TO DEVALUE MY CHILD'S LIFE."
Stranger: "Um....I was just trying to be nice. Over it. Bye."

A teachable, life-sharing moment that turns into a soapbox lecture does more harm than good. There is a way to model advocacy without making everyone feel like they need to walk on invisible eggshells around us.

And to be perfectly honest, this isn't directed at anyone but myself. A past version of myself. This is a convo that I would have had (maybe not out loud, but definitely would have thought) back when Addison was first born.

This ties into the thing puzzling me now. The latest trend in Down syndrome advocacy is along the lines of: "It is rude to use the phrase 'special needs' and the world needs to STOP!"


I have seen this argument on multiple levels by multiple blogs/videos/you name it. And while every source I have seen lists some great points, solid arguments, and 99% of thoughts that I completely agree with...I am left asking...why?

Why are we setting up more roadblocks to limit people feeling comfortable enough to talk to us and our kids in an attempt to learn about and relate to special needs families?

The latest article I saw preaching this new anti-special needs perspective made me think of something that happened to me last week.

I have a friend who recently had a baby with a surprise diagnosis...NOT Down syndrome. I have genuinely loved following her posts and articles and learning more about her baby's diagnosis...a diagnosis that I have zero previous knowledge about. I love that my perspective is being shifted and changed by this friend caring enough to share her experience.

When I randomly ran into her last week for the first time since she had her baby (and diagnosis), I was thrilled! I wanted to show her love! I wanted her to know that I get it! I wanted her to know how beautiful and amazing I think her baby is and what a fantastic job she is doing.

As I stared into the tired eyes of a new mother and at her gorgeous baby, I opened my mouth to say all of these things, but then I remembered.

Part of her baby's diagnosis includes very unique features, and she had posted a very vulnerable post about how hard and insensitive it is when strangers won't stop commenting and oohing and ahhing over her baby's beautifully unique features.

Of course I didn't want to offend! But then I froze. What could I say then? What should I say? I didn't want her to feel hurt but how could I still acknowledge her baby without hurting her? I genuinely had no idea, and our short exchange ended with me not saying one single word about her baby.

As I walked away, I was horrified with myself for not saying anything. I thought about when Addison was a baby how offended I would have been if people hadn't acknowledge her at all. This brought to mind all of the dozens of verbal roadblocks that I put into place that people had to bravely traverse around in their attempt to show me love.

I don't deny new moms these valid hurts and these tumultuous emotions as they figure out what all of this looks like. I don't begrudge my friend her post and her offense and her rules because I've been there. I've done that. I get this part of it too. I think it's honestly part of the process.

But I didn't realize until walking away from her last week how tricky it can be from the other side.

When I see the special needs community rising up to protest the semantics of their title....a title that really means nothing in and of itself....just words that distinguish our families...I wonder why we would want to set up more reasons to make people feel like they can't try with us?

Why are we trying to shut people out by making them feel like they are talking to us all wrong?

Why are we attaching extra meaning to the words "special needs" to make this phrase offensive? The word "special" is not a bad word. Why are we making it into one just for argument's sake?

Addison honestly does have needs that are different than my other kids' needs. In a bad way? No, just different. So what do I call this? Different needs? Extra needs? Special needs? I'm not seeing the difference here enough to warrant a war on the world for choice of words.

I proudly wear the title Special Needs Mom. To me these words hold a lot of beauty, a lot of hope. They spell victory to me. "Special needs mom" is my crown, my journey, my love. I adore being a special needs mom and the truth is, I have a different journey than friends who don't have a child with Down syndrome. I get to see different scenery and learn different life lessons. Oh sure, the hardness of this journey varies according to what stage of life we are in and when the hardness lessens at times, it can be tempting to resent being labeled as "different" because it feels so "same". Addison is a child who needs nurture, care, and love...just like my other three children.

But when you find yourself sitting in a waiting room while your child's heart is operated on...I'm sorry but not every mom goes through that. It is a bit of a special twist to the motherhood journey. And with this special twist come with it (wait for it) special needs.

And if "special needs"is now OUT, where does it stop? Will someone wake up one day and decide how offensive the word "Down" is in "Down syndrome"? (Never mind it is named after a person, not the direction down, but I digress.) This person sets off on a mission to prove to the world why calling it "Down syndrome" is negative and offensive and horribly incorrect when we should be calling it "Up Syndrome". And while the world scrambles to switch this, someone else wakes up one day and says, "I feel that calling it a 'syndrome" sends the wrong message. It's not a disease! It's not something to be cured! 'Syndrome' is offensive. And to further send a message of positivity and hope, let's just use the word 'up' twice. So instead of saying she has Down syndrome, kindly use the correct terminology of 'she has Up Up' or else SHAME ON YOU.

The world is all like ???????? We just wanted to love your kids. Not sure what we can call them now....so we will retreat and call them...nothing.

And DISability? How negative and horrible is that!!! It's now PROability. Get these words exactly right or you are a horrible human being!!!!

Okay I admit how ridiculous this is, but I'm trying to make a point. It creates confusion barriers oftentimes resulting in silence.

For what? All of this confusion in titles....doesn't change anything.

My daughter has an extra chromosome (you can't be offended by that word because SCIENCE). She is beautiful and thoughtful. Inquisitive and sometimes stubborn. Smart and funny. Cute with dance moves I can only dream about. She is the light of my world. Delightful sound track to my life movie. And sometimes she has special...extra...whatever you want to call it...needs.

I'm okay with that. I'm more than okay. I delight in every part of her personhood. Every last chromosome.

Special needs weave themselves throughout my days, and I don't resent them. In fact, I welcome them as it helps me love Addison in the specific way that she needs to be loved.

Varying the specific title does not change what an amazing person she is, and when people refer to her as having "special needs", they aren't trying to be disrespectful of her as a person. They are just trying to talk about her in the only terms they know. Because how else can you pinpoint the beautiful uniqueness that is present in her life without using a specific word to do so?

My goal as a special needs parent is to extend grace to people who are simply trying to understand...trying to be there...trying to be kind even when their words falter around an unfamiliar topic. How about this:

Stranger in the grocery store, genuinely wanting to interact: "Oh your little Down syndrome girl is so cute!"
Parent: "How offensive! That's BABY with Down syndrome, you monster! How COULD YOU BE SO INSENSITIVE AS TO DEVALUE MY CHILD'S LIFE."
Stranger: "Um....I was just trying to be nice. Over it. Bye."
Parent: "Thank you so much! Yes, my daughter with Down syndrome is amazing. Love her."
Stranger: "I noticed that she's been swiping at those chocolate candy bars for a while. I totally feel her on that. Kids always know where the good stuff is. Don't even need to be taught."
Parent: "Oh? Candy bars? Yes, she loves chocolate." (discovers stolen candy bar in Addison's purse that she's been eating all along) *face reddens*
Stranger: "She reminds me of my kids when they were that age! Little trouble makers. Adorable troublemakers...but stinkers nonetheless. Bless you. You're doing a great job."
Parent: Thanks that's so sweet of you. *works to wrestle chocolate from Addison's death grip.*
Stranger: (walks away with a huge, day-made smile at Addison's adorable, chocolate-covered laugh and smile)

As opposed to this approach:

Stranger in the grocery store: "I have a niece who's a special needs mom too! How old is your little girl?"
Parent: "Special??? You think I"m special because my child is special and rides a special bus and needs special things and isn't a NORMAL HUMAN BEING WHO NEEDS LOVE LIKE ANY OTHER CHILD????? How.dare.you."

We are missing connections and opportunities because we are getting caught up in semantics.

I know this because I am guilty of this on many occasions. Hindsight is 20/20...I am trying not to cut off the extended hands of kindness toward me just because they don't understand my perspective on all the things. We have to work together.

Having said all of that, I realize that this is just my opinion. We are allowed these on the interwebs....I hear.  I don't begrudge these other families their mission since it obviously means a lot to them. I know we all have sensitivities in different areas. Different paths off the same journey. I get this, and I respect it.

But I won't be participating. Maybe I'm the only one. Maybe I'll be the only "special needs" parent left while everyone else becomes "extra chromosomal needs specified by political correctness of the 2017 rules of Up Up" parents.

Who knows.

At least my title fits on a coffee mug. (-;

Tuesday, October 17, 2017

You Matter

I sat across from my friend, coffee cup in hand, mind spinning at what she had said.

It was a beautiful fall day, the kind where the bright sunlight doesn't compete with the coolness of the air. Perfect for sitting out on the deck and enjoying the vibrant palette of fall colors on display at every turn of the head. Not too hot, not too cold-- just right in a very New England sort of way.

To say my mind was spinning at her statement during our deck coffee date might sound a bit overly dramatic. Honestly, I would take it a step further and say, "mind blown".

I grasped my coffee cup, coffee now cold, as her simple words linked together the pieces of puzzle that had been floating around inside my head for years. Maybe not even just from the start of parenthood. For my whole life.

Such simple words, such an impact.

"Stuff doesn't matter," she said, referring to why she didn't get upset at her kids when her kids would accidentally break her things. "Stuff doesn't matter, THEY matter."

Immediately my mind applied this to my children and how when they break my things, more than I care to remember, I get angry and rather yell-y. Okay a lot yell-y.

But her statement made me stop and ponder. When I yell, does that inadvertently tell them that in that moment, they don't matter to me as much as my stuff?

What about when we are trying to get out the door and someone accidentally does something to waylay my beautifully orchestrated plan to be on time for school and I lash out with a heated response?

Am I saying, "Listen, kid, us being on time is way more important than you."?

I realized I could substitute that phrase for many things.

"My career, my ambitions, they don't matter. You matter."

"Your diagnosis, it doesn't matter. You matter."

"My idea of what motherhood should look like doesn't matter. You matter."

"You. Matter."

Am I treating my children in a way that they know that they matter? More than the words I say...but rather, HOW I treat them?

I struggle with the patience thing. So many pieces are being balanced so many directions to mother 4 small kids and do all the things that go along with that. When those pieces are swatted out of the way by my kids who I am doing these things FOR and the delicately managed mountain of chaos all around me begins to collapse...I am ashamed to admit that my first response is to get upset.

I posted about such an instance this week. About yelling at Addison as she spilled her cereal all over the floor right as we were leaving for school.

And I apologized. "Addison baby, I'm so sorry I yelled at you. Mommy was wrong. Can you please forgive me?"

And she did. Quickly, with the tears still drying on her cheeks.

But my heart. I begged God to please, please give me the patience next time. I can't do this on my own. Motherhood is very good at ripping open my very soul and revealing my desperate need for Jesus.

I want my kids to know that they matter. I want to show them love, not just tell them the empty words, "I love you" while showing them every second of the day that I love my agenda more.

And so as his flushed, smiling cheeks refuse settle on his pillow at  night, his wide, innocent 3-year-old eyes and sweet mouth begging for yet another hug. Another kiss. A song. I recognize that in that moment he matters more than my evening rest time.

When she struggles to get ready for school, and my patience wants to snap and explode, I see her need for help and encouragement. That she matters more than being on time. That she might just need an extra minute and help to get those tights just right.

When mealtime is not the calm, peaceful cover picture from the 50s with smiling children and properly held forks and plates NOT dumped all over the floor...teaching them calmly is more important than a clean floor. Because they matter.

Several people made the comment to me this week that it was good for Addison to see me apologize. That she needs to see that too.

This got me thinking. I am an imperfect human being raising imperfect human beings. My job isn't to be a perfect mother or get frustrated as my humanness bleeds through. My job is to show them how to live imperfectly. How to make mistakes and apologize. How to humbly ask for forgiveness. How to model imperfection and life dependent on Jesus.

All the while showing them that they matter.

Not making them the center of the universe. Not making them feel like nothing in the world matters but THEM.

No. This is more of a heart attitude of me to them in those moments where I think my entire being might burst with anger, with impatience, with a day gone wrong because of them being...children.

This is a reminder to me to replace the yelling and anger with calm, teachable moments. With as much for me to learn as for them.

They matter enough for me to treat them with all the kindness the Lord has to give.

They matter.

God has been so good over my course of motherhood to help me with this. I am so far from perfect, but I see so many instances where Deanna of 8 years ago would have lashed out but the Deanna of today responds kindly because it's actually not Deanna's strength at all. This perspective reminder continued a work that the Lord has been doing in my heart for years but that for some reason the last few weeks I have hit a major stall on. Until I heard these simple words uttered with such love.

So I sat across from my friend, the light fall breeze whispering through my hair, and I felt the enormity of this concept sink down into my brain and transform my bad attitude toward my children. And even perhaps, a little toward myself.

Because I matter too.

I know this not because my friend said the words, but because she sacrificed her entire morning to sit with me on my deck and talk about motherhood and life and everything inbetween. She showed me that I matter. And this gentle, teachable moment was not lost on me.

Thursday, October 5, 2017

You're Allowed To Be You

Yesterday I attempted to replace the heater vent cover in Addison's room. I am typing this with bandaged fingers, so as you can imagine, the heat vent won.

As I sat on the floor, frustrated by my lack of success, I couldn't help but stare at the wall in Addison's bedroom.

I saw wild colors and a variety of lines leading nowhere. I saw her imagination at work. I saw something that traditionally was meant just as a blank, space-holding device, transformed into a physical manifestation of her uniqueness.
I've posted about this before, but in case you haven't seen me mention it-- I give Addison free reign of the walls in her room as long as she leaves the walls in the rest of the house alone. This is our deal, and it's been working well for us.

But yesterday as I sat on the dark, wood floor of her room and stared at the light gray walls that are hers, tears brimmed in my eyes. I've seen her drawings here a million times, but never had I stopped to really SEE them.

This was far more than scribbles on a wall. This was an exploration of emerging fine motor skills. This was celebrating freedom of movement. This was Addison, being Addison. No rules to follow, no specific drawing instructions. Just heart and soul flowing directly through her crayon of choice.

I got up from the floor, found the biggest frame in my storage closet, and placed it over her artwork.

To me, this stood for so much more than some kid art on the wall.

It reminded me of my relationship with Addison...with Down syndrome.

The longer I parent a child with Down syndrome, the more I realize how little this is about me and my feelings about Down syndrome. This isn't about my hopes or dreams or fears for her future.

I am just the frame. And an imperfect one at that.

Like any art display, the focus is not the frame but rather the art held within. Or, perhaps, within and around. Because who is the frame to define what the big picture should be? And in this case, the colorful, creative picture is Addison being perfectly...Addison.
Way back when, after I got over the initial shock of Addison's diagnosis, I had big plans for her. So she had Down syndrome? So what? Through my expertise parenting (ha!) I would help her still be AMAZING!

I figured I would train her to rock that chromosome. To learn and achieve so impressively that she prove what an incredible human being she was by wowing the world. I would set her up on a pedestal of achievement and set an example and advocate the HECK out of Down syndrome.

I would take her extra chromosome and shove and shove until it fit PERFECTLY inside my frame.

A bit into my "rocking the extra chromosome plan", something dawned on me. (Actually to be more accurate...a large, rocky boulder of realization knocked some sense into me.) Addison does not become more of a person by being pushed and trained toward normalcy. Her worth does not increase the more she accomplishes. She doesn't need to prove anything. She doesn't need instructions to "rock it". And furthermore, my interpretation of Down syndrome means nothing.

I learned that she rocks that extra chromosome and proves what an incredible human being she is...simply by being Addison. No achievement required.

I stepped back from "my plan" and let the person who owned the picture take over. I stepped down from the podium and sat down to take notes.

Why had I been trying to make Addison into something different than who she was? Into my vision of what Down syndrome should be? Why was I attempting to change her and PROVE her to the world? She doesn't need to prove anything.

Addison is this wall art. Beautiful, thought-provoking, outside the lines, colorful, beautiful, not easily explained, entirely unique, captivatingly interesting. It's not my job to try to draw lines between hers to make the picture "make more sense". Or paint over part of it so it fits into the frame.

No. I am the frame that sits passively, watching the master artist at work, allowing her to shape what the picture should be.

Don't get me wrong. She achieves, we push her to do so, and I think she's amazing! She's reading, counting, jumping high, running fast, and is fiercely independent (and can we talk about her chocolate thug climbing skills???) I ADORE watching her emerge into her best self.

But none of this achievement is about proving anything about Down syndrome.

I love LOVE when I see adults with Down syndrome making the news for their achievements. Seriously these news bits bring me such joy.

But I also love LOVE when I see adults with Down syndrome in the grocery stores...just living and enjoying life.

To me these two things are the same. It's not about the headline, it's about the person.
You may be wondering what does achievement and "just being you" have anything to do with each other? Once upon a time I thought the two were closely entangled. Perhaps even the same. Your achievements defined you. From the other end, "you" were nothing without the achievements.

Addison has taught me that this is false. Oh so false.

We all have these small idiosyncrasies that make up our personality. Tiny oddities unique to us.  We are allowed to be "us" without apology as we navigate life, achievement or not. Isn't someone with Down syndrome afforded this same courtesy? Yes and YES.

Furthermore, how much of this personality thing is tied into Down syndrome and how much isn't? How much of her exists within the extra chromosome and does any part remain untouched?

Here's my highly scientific response to that one: I don't care.
My Dearest Addison,

It's okay. You're allowed to be you. We will more than tolerate it. We will cherish the youest parts of you.


And so yesterday as I sat on her floor (for hours....seriously that heater vent is a beast), I took time to just appreciate Addison for being....Addison. No additives...no subtractions...just her...perfectly whole and exactly as God designed her to be.

Down syndrome acceptance goes far beyond the words, "I accept Down syndrome". It's digging deep and throwing away all prejudice. Maybe this is one of the reasons why God created Down syndrome. Because what a lovely way to learn an important life lesson. These words explore what it means to love another human being for exactly who they are.

Chocolate stealing and all. (-;