Monday, March 25, 2019

What's in a name?

I’ve seen quite a few people upset or irritated by changes in how we refer to people who belong to a population outside their own. Maybe they feel frustrated that they can’t keep up or embarrassed if they’ve used the wrong term. I don’t know, but I just want to offer that it’s common courtesy to call people what they want.

If you’re name is William and your whole life your family has called you Billy, but you decide in college you’d like to go by Will, you have that right. It’s hasn’t changed your identity, but it has changed how you see yourself and how some people view you. And it’s something you have the power to decide.

Simply put, this is what people in marginalized communities face, but people act like it’s a huge imposition. When a person with Down syndrome asks not to be called “Down’s” or “special” some people feel personally attacked.

It’s not an attack. And it doesn’t even mean that those terms were bad. It just means that the individual or community you are interacting with would rather go by a name like Will rather than Billy. They have outgrown a name that worked for a while and are ready for something different.

When the terms that our parents’ or grandparents’ generations used as polite terms no longer feel right to people of color, people of different abilities, people in the LGBQT+ community, it’s our job to listen.

It’s our job to call people what they want.

**There are obviously terms that are not and have never been okay. We all generally know those terms and that is not what I am referring to.

Thursday, June 7, 2018

People First

My 6 year old, Cohen, is a trickster. He can make anyone laugh with a well-timed prank and the contagious giggle he releases at the conclusion of it. He is fiercely loyal to the people he loves. Just try to pick on his little sister or even correct one of his big brothers and he’s in fight mode. He’s known for his mad dance moves and rarely does a day in our home pass without at least one Cohen-initiated dance party. Cohen also has Down syndrome. He is not a “Special Needs Child.” He is a child first: a child with special needs.

This simple shift of language is called Person First Language (PFL). I know it sounds complex and like something geared toward the over-sensitive. I get it. No one likes to have to string together more words or wrack his or her brain for the correct terminology in any given situation. It doesn’t seem like it should be a big deal. Downs baby or baby with Down syndrome- it seems like more work to say the same thing. However, PFL is about far more than semantics; it’s about identity. It’s about humanity. We all long to be seen, to be valued, and to belong.

When we reduce people to their disabilities, we rob them of the dignity we all long for. We set them apart from ourselves without knowing anything else about them.

Cohen is a funny, loyal, dancing boy who has Down syndrome. Down syndrome is a part of who my son is, but it is not what defines him!

When we use PFL, we are acknowledging someone’s humanity over his or her label. This is a gift. Not only to the person we are speaking to or about, it is a gift to ourselves and our communities. We offer ourselves the chance to really see the other person as a person. We might be overlooking or underestimating people in our own circles, because in our minds “he’s just the Down syndrome guy” or “the disabled lady” or “the special needs child.” When we look first to the person we might find a valued coworker, a trustworthy friend, or a hilarious prankster.

By looking beyond disability, we offer our communities access to an underutilized and highly motivated workforce, citizens with more to offer the world than just their disability, and a generation growing up with a can-do attitude.

And while Person First Language is quite the mouthful, actually using it is pretty easy. “Special needs child” turns into “child with special needs.” Instead of saying someone “is disabled”, try “has a disability.”

When in doubt just remember: the person comes first.

You are making our communities more inclusive and welcoming by just recognizing the people who inhabit it alongside you.

Monday, December 18, 2017

The Little Brown Refugee Baby is Coming

Advent is here. All the beautiful, magical moments that come with Christmas have arrived. The tree is up, holiday music is playing everywhere I go, and lights are twinkling all over town.

But it doesn't feel very magical.

I've been down for a while now, fighting to keep my head above water. And all the sparkling and smiling and creating beautiful moments feels like more than I can handle.

Right now, the best I can do is show up.

It sometimes feels wrong to celebrate the birth of a baby who was destined to become a refugee while there are still refugees forgotten in camps and lost all over our world.

There is pain that comes from knowing that the man with "no place to lay his head" has his birth celebrated with extravagance rather than by trying to find safe places for for those experiencing homelessness in our communities.

It's overwhelming to think about people who say they follow the man who honored, respected and lifted the status of women everywhere he went praise a world leader who uses and abuses women and is proud of his exploits.

We spend the month celebrating a poor, middle eastern baby who would not be welcome in many of the churches in my community, because he is poor and a person of color and when he grew up, he did not follow the rules.

I feel so angry and so sad that people fight about "the reason for the season," but seem to understand or care very little of how revolutionary he really is.

I want to rage and cry and hide. I want to do something! I want to yell at someone! SO, I'll yell here into the void:




And yes, I know that things are getting better. We are doing better in so many areas.

There's just still so much in front of us.

I'm still showing up, though. I'm baking cookies and making memories, because this is the only childhood my children will have. But I feel the tinge of sadness that colors even our most joyous moments and I know it's okay. The sorrow I carry reminds me that there's work to do. It reminds me to keep fighting, keep loving, keep following the path that started with that tiny baby so long ago.

This advent, I am not just waiting, I'm working.

Tuesday, September 19, 2017


Their hair is a similar shade of blonde; light with natural highlights. His has a slightly copper tint. Everywhere we go, people think they are twins.

Sometimes, when I am feeling brave, I correct their assumptions. "No, they're not twins. They get that a lot. He's four and she's three." Sometimes people look disappointed- like they thought they might be seeing a unicorn, but no, just a horse with a horn glued on. Trickery!

They do almost everything together. She narrates their play and he (usually) follows the instructions. They take turns singing and dancing for each other, clapping and cheering wildly at the end of each turn. She often knows what he wants, even when we don't. They look at books, run around the yard, and fight.

Recently she was surprised to notice that he "doesn't talk so much." I know more realizations of this nature are likely as they grow. People will stop assuming they are twins and begin to think she's the big sister. Play will look different and so will the fights.

But today, they are on the floor doing puzzles and they really do look like twins.


Wednesday, May 3, 2017

Never Enough

Lately I've found myself overwhelmed by the never-enoughness of motherhood. Not the lack of confidence that comes with early motherhood that always asks, "Am I enough? Can I do this?" There are still stages and phases of that question, but not nearly as often as in the baby years.

I'm talking about the real never-enough. The play with the little children on the floor for 45 minutes, then listen to the big kids talk about their new favorite lego designs for 20 minutes, make lunch, start a load of laundry, and then try to go to the bathroom with the door shut so you can text your husband, but now EVERYONE is acting out for more attention kind of never-enough. As the mom of four kids, there really isn't a way for me to give them all of the attention they want. It just isn't possible.

Bedtime: Hug, rock, sing a bedtime song. Repeat. Tuck into bed, give a drink of water and a kiss. Repeat. Now the big kids: talk, hug, say good night. Repeat. Go back to check on the little ones. Kiss a boo-boo, give another drink of water, put them back to bed. Eventually they are in bed and even though I love having some time to myself in the evening, I am in bed shortly after.

It's so easy to just follow the never ending rhythm of being a mom. It's hard and exhausting. It's easier just to ride the flow of never-enough until you find yourself washed out to sea, unaware of where or even who you are. Getting lost in never-enoughness is painfully easy.

But I am finding that I can not allow myself to wash out to sea, because when I do, I am not okay.

Taking care of myself requires real work and creativity on my part and my partner's. I know it looks different for everyone, but I've found several things that help me feel like me. And when I feel like me, I know that whatever they need, whether or not I can meet that need, I am enough.

Here are some of the things that help me feel like me:

Friends. I know, this one is hard! How the heck do you make mom friends?

"Hello, woman with a child that is playing happily with my child. Do you have friends? I would like to have friends and you look like a good candidate."

My first couple of years with small children were painfully lonely. I felt isolated. I am naturally introverted and had no idea where or how to make friends. I've found that the best way for me to find friends is just to keep showing up somewhere. The homeschool co-op we're a part of is where I have made some great friends, but there are lots of places to try: library story times, MOPS groups, volunteer organizations, special interest groups (like knitting, gaming, or mountain climbing clubs), whatever fits your style! The key is to show up and keep showing up. Don't run off as soon as story time is over- stay and play; maybe you won't feel brave enough to strike up a conversation with the mom of the child that is playing with your child this time, but keep showing up and it'll get easier. It takes courage to keep trying, but having people who get you, who understand where you're at in life, and who will help clean poop off your kids' feet are so totally worth it.

An afternoon with a friend and a pile of collective children can be magic for when that never-enoughness takes hold.

Alone time. Okay, I know this isn't for everyone, but introverts know. A couple hours with a good book or some blank pages and my favorite pen helps me find my way back. I feel more alive when I have time to dream. It looks different for everyone, maybe you're a hit the gym kind of girl (more power to you!) or an artsy-crafty pinterest mom (if these really exist?). Whatever it is that makes you feel alive- do it! Talk to your partner about setting aside some time for yourself (once a week, every 2 weeks, once a month- do what you can). If you are a single mama, maybe trade off with a friend or relative. You are so worth a couple of hours!

Bathe. It feels like there is never enough time for everything. I don't really mind going several days without bathing, so this often comes at the end of the list for me. But! If I feel myself slipping away and there's no way to do one of the more time consuming things that I know help me, I'll turn on Netflix and give myself 22 glorious minutes to breath.

Good food. Maybe this means taking care of myself by making food that is emotionally satisfying as well as nourishing. And maybe some days this means hiding in my room and eating a piece of my favorite chocolate. Do what you need to do, I'm not here to judge.

I'm sure other people have extensive self-care lists, if nothing here helps you find your way back to enough, find something that does!

All I'm really saying is that the never-enoughness is real. I'm not crazy. You're not crazy. It's real and we don't have to stay there. I'm just learning that my kids need a healthy mama. That place where I feel lost at sea is not a good place for me to try to lead from and it certainly isn't a place of love. And isn't that the point? I want my kids to know that what I do comes from a place of love.

I know we've all heard it a million times: "You can't pour from an empty cup" or "You have to put the oxygen on yourself before you can help you child." Just call me the keeper of cliches, because it's true, even when it's annoying. We can do this- we don't have to be perfect at it, but we can keep paddling toward the shore. Love is worth it.

Friday, April 21, 2017

Fun Mom

The morning started out a little rough. My perfect, lovable five year old (you know, the one with Down syndrome), ran out into the pouring rain and splashed in puddles while I was gathering all the things going in public with 4 children requires and since we were already going to be over half an hour late to our homeschool co-op due to literal hail and high water, I just ran back in the house grabbed a plastic bag and a pair of dry pants to change him into when we reached our destination and hit the road.

Things at co-op are a little hectic due to the weather and lots of last minute changes. 5 year old tries to run away multiple times. I can't seem to get out of my morning funk.

My poor unsocialized homeschooled children were not ready to say goodbye to their friends by the time our reserved co-op time at the library expired, so I decide to be a fun mom and make plans!

Side note: This never goes well for me. As soon as the words "fun mom" cross my mind a dark shadow begins to loom and something bad is destined to happen. Why do I even let those words live in my mind? I'll never know.

Let's take our kids to the park and play!

Friends (smarter than me) remind me that it's been raining and will probably rain more and also that it's lunchtime and kids need to eat.

Okay! Indoor play place + lunch with friends = Total fun mom!

I am awesome! A little frazzled, but awesome! Fun mom! I take the little kids to the potty before loading the van, drive to the nearest chicken place, start wrangling tables for 6 adults 12 children, and order while the kids play.

Just as the food comes out, 5 year old comes to me with wet pants. Gah! I take him to the bathroom and put him in the dry pants I grabbed earlier that I had forgotten to change him into at co-op. Toss the wet pants and undies into the baggie and walk calmly from the bathroom. No big deal, it was just a little accident.

As we rejoin our friends I notice that they are closing down the play place. Weird. One of the kids says there's pee in there.

10 minutes later I realize it was my kid's pee the poor teenager is in there cleaning up! Somehow I forgot that pee doesn't just disappear after it soaks through pants. I'm a little embarrassed and feel really bad, but at that point it's a little too late to do anything. One friend mentions this funny story she read about a mom who's kid pooped all over a chicken restaurant to help me feel better about the pee situation. She tags me in it so I can read it when I get home.

By the time the kids are done eating, the play place is clean, so they swarm while we adults talk about adulty things and giggle like children. I'm staying relaxed, you know, fun mom.

The kids play for a while before a really awful smell fills our area. I look over at my friend's toddler expecting him to need a diaper change. Nope, not him. I look the other way and see my 5 year old. No. He's potty trained. I look in his pants. Yes. Kids start yelling and freaking out. There's poop streaked around the floor on the path to our table. There's poop streaked through the play place.

Remember when I changed him into dry pants earlier? I only had pants, no undies. Yeah. You know what happened.

I stand there frozen for a minute, completely unsure of what to do. His feet are coated in his own poo. I feel overwhelmed to get the poop outside away from all the poor people at the restaurant, so I carry my child (holding him away from me, because, poo), to the van and stand outside my van in the rain while I try to figure out a course of action. I realize now, that the most logical place to go would be the bathroom, but that thought did not cross my mind in the moment.

A friend brings me some baby wipes and I take off my kid's pants and do my best to wipe him off. In the parking lot. In the rain. I find a random pair of pants in the van, put them on him and buckle him in his carseat. All the nastiness goes in a bag and I call a friend and ask her to send my 9 year old out. 9 year old is crying because he's (justifiably) mad that our fun day has been cut short and waits with the 5 year old in the van.

By the time I reenter the building for my walk of shame, my friends have bagged up poopy shoes for me, gathered my other kids, quarantined poo streaked areas, and have little packets of sanitizing wipes ready for me. I wanted to cry. I could not have handled all of it without them. Who knew that a poop fest could offer such love?

I sanitize, take my other two kids to the car, and go home.

Only later, when reading the funny chicken restaurant poo story my friend sent me, did I realize that a good citizen would have cleaned up the poop in the playplace! Those workers earned their wage and then some today!

Fun mom.

Thursday, May 26, 2016

Oklahoma Legislature Attacks the Disabled

If you live or work in Oklahoma City, chances are, you've seen your Oklahoma City Firefighters on the side of the road collecting money for the Muscular Dystrophy Association. The MDA distributes this money to families living with a loved one with MD- they help meet the needs that Medicaid and other services don’t cover.

Anyone remember the new city ordinance that people are not allowed to step off the road or onto the median? You know, the one to keep us from having to look homeless people in the eye as we drive past? The one that makes it easier to forget that humanity comes in lots of different packages and that not everyone has the same privileges we were born with? Yes, that one. Yesterday OKC Firefighters received 15 citations for stepping onto the median to collect money for children and families living with muscular dystrophy! It looks like this fabulous city ordinance will keep us from being bothered by the idea of those “sad little children confined wheels” as well.

Oh well, at least there’s Medicaid to help those kids, right? Today Oklahoma’s state legislature is meeting to vote on a budget that guts Medicaid even further. A huge amount of our nursing homes (many of which house adults with disabilities) will no longer be able to care for their patients, because the Medicaid money won’t be there.

Luckily when the state closed institutions in favor of caring for people with disabilities in their own communities they set up the In-Home Supports Waiver! Families were supposed to receive money each year to help off-set the cost of care and save the state money (Institutions are astronomically expensive to run), never mind that there are more than 8,000 people on the waiting list for services through the waiver. No, the Oklahoma legislature has now decided that these people are expendable and this program is set to be cut today in the budget they have proposed!

And no, they can't just go pan-handling. Remember, the city doesn't want us to have to see those less fortunate than ourselves.

We cannot allow this! We will stand up for the most vulnerable in our communities! Please call your State representative NOW and tell them that the proposed budget is NOT acceptable. We will NOT allow our state legislature to give themselves are raise on the backs of our most at-risk population!

This link will lead you to your representative: