If Something's Not Working, Change It

Oh my gosh, I haven't posted in a really long time! Is Blogger even a valid blog platform anymore? Anyhoo, I thought I'd dust off the old keyboard and finish a post I had started to write way back in December of 2017. Over two years ago!

First I'd like to explain the title of this post. This is courtesy of my wise mama Barb. She has this knack of finding solutions to problems with ease, almost like she has an otherworldly insight into life’s problems. Anytime I bring an issue to her attention, without hesitation she will have an idea. It's always something simple and practical. One of her most common answers? "If something's not working, change it".

I have utilized this advice many times over the years. When Ellie’s therapies were beginning to be too much for us, we opted to take the summers off. Therapy-free summers were renamed "real life therapy", and we have not looked back. We actually see huge gains in Ellie's development during these breaks. When my corporate job was overwhelming, my mom suggested working 4 days instead of 5. I asked my boss, and after some planning and rearranging I was able to have Fridays off. It was one of the best decisions I have ever made for myself! And since I wrote this post, I have quit corporate life and joined Jesse at Stafford Beverage selling booze! What a huge change for me, but a good one. I'm still adjusting to this new role and am finally settling in. Being home at the end of the day to get the kids off the bus has been the biggest bonus with this change. I am so grateful.

The whole point I'm trying to make, is that when you find yourself stuck in a rut, feeling down, and as if things are no longer working, take a step back and make a change. Try talking it out with the ones you love, lean on your mom, mother-in-law, husband, or best friend. Talking it out will help bring out alternative solutions to the surface. And hey, if it doesn't work that is OK too. You can just move on and try something different.

But that brings me to the reason I wrote this post in the first place. Sometimes, something isn’t working right before your eyes and you don’t even realize it. Like the time we found the note in Luke’s backpack. The guilt-inducing, I seriously suck as a mom note. I was sucker-punched, right in my guts.

It was after dinner one cold night in December in 2017. Jesse and I were cleaning out the kid's backpacks, and he happened to flip through one of Luke’s notebooks. Doodles filled the pages, Luke’s signature unicorns, detailed eyeballs and other colorful creative creatures. I like to think of this moment as a little nudge from the universe, because I’m usually the one who empties backpacks. But on this night, Jesse took on the job but he happened to flip through Luke's notebook, something I wouldn't have done. He handed the little notebook to me and nodded as if to say "check this out" with a concerned look on his face.

In Luke’s cute little handwriting was an “attention chart”. He had drawn a pie chart where he carefully outlined how much attention each of our kids receive. Luke: 25%, Will: 35%, Ellie: 50%. That equals 110%, not too shabby, eh? In all seriousness, I felt terrible when I read it. Absolutely terrible.

"Attention Chart"

I immediately called my mom. You see, I grew up with 6 brothers and over 100 foster kids in our home. Why did I not feel deprived for attention as a kid? I needed to know what the heck was I doing wrong, and how to fix it. I was crushed. She reminded me of our “hooky days”. Ahh, yes, hooky days!!! One of my most cherished memories! My mom would let me skip school and we’d spend the day just the two of us doing whatever I wanted. This usually would include trips to the mall to buy cassette singles and acid washed jeans. It was amazing and memorable.

After I got off the phone with my mom I excitedly asked Luke his thoughts “hey would you want to skip school and take a hooky day with me?” He was thrilled. “Heck yes!" He said. "Can Grandma come? Can we go to Walmart and Chipotle?” So that’s what we did. We had a blast, we found some fun things for his art desk. We went to Walmart, and Goodwill. We took our time eating lunch at Chipotle, and didn't rush like usual. We had the best day ever.

Hooky Day 2017

And now it is two years later. Today Luke took his 3rd hooky day since I originally found the attention chart! Each of our kids get one day during the school year to take a day just for themselves and we do whatever they want. I love it just as much as they do. But man! Sometimes life kicks you in the nuts with an attention chart and it requires change to be made. I must say I'm glad we found that chart Luke drew and that we could openly talk about it with him. Today was so fun, can you guess where we went? Walmart and Chipotle, and TJ Maxx as well. We rushed home and Grandma helped get his room all decked out just the way he wanted it. It was the best day ever. :)

New bedding and loving it!

Hooky Day 2019

Oh, and I had another realization through all of this; my mom and I are still taking hooky days together. Every year on the day of our birthdays we go shopping and out to lunch. We always get a cocktail with our lunch and we have a blast together. This year is her big 80th birthday so we are taking a hooky weekend to Utah together. I cannot WAIT!

I wonder if my kids will still want to take hooky days with me when we are older? I sure hope so.

Hooky bday with Mama

Is there something in your life that may not be working? Take a step back and look at your situation. Even the smallest change can make an impact. Think of my mom’s words next time you are stressing out, "if something’s not working, change it”. Try it, you'll see. And you'll laugh at how simple it is. Thanks mama Barb for always having the best advice.

For this week's post I'm choosing a song that reminds me of my kids, because I'm a total sap for mushy love songs. 

Little Hands - Inland Sky

3/21/15 World Down Syndrome Day

Guess what day it is!!?

It's 3-21, otherwise known as World Down Syndrome Day!

I have so much to talk about that I don't even know where to start!! Can you hear the excitement in voice?? I mean in my typing!?!?

First off, the Down Syndrome Diagnosis Network has been fortunate to team up with the amazing and talented blogger Meriah Nichols in A Day in the Life of Down Syndrome. We submitted our day here: A Day in the Life of Our 2 Year Old Bookworm. I posted a video of Ellie reading at 26 months old at the end of the post. She is just amazing us! We also posted photos to Instagram and Facebook with the hashtag #lifewithDs. I'm still new to this hashtagging business but I think I figured it out. Here are a couple of my faves:

My big bro Joey helped design a shirt that we sold to raise funds for DSDN and we ended up selling more than our goal. Check out the awesome design (and the cute kids wearing them!) I'm kicking myself now, I wish I would have bought Jess and I shirts too! My father-in-law has one he will be sporting, the kid's daycare lady Lynn bought one (we love you Wynn!!!) and my friend Megan from high school even bought one. Heart. Is. Full!!!!

The Mighty made a shout out to their contributors to submit a short video answering the question "what is one thing you wish people knew about down syndrome?" and my boys answered. Check out the beautiful video below:

The Mighty - WDSD Video

Yesterday the boys wore their sweet new shirts to school (yes they are wearing them 2 days in a row, and no I didn't have time to wash them) :) Mrs. Miller, Luke's Kindergarten teacher even played the Mighty video for the whole class, twice! Luke was so excited to share it with his friends, his smile was a mile wide when he got off the bus yesterday!

The Mighty also wrote a story about how those with Ds experience a range of emotion... this isn't a surprising concept, right? Check it out and see Ellie and Lloyd (our kitty) in the article. I cannot tell you the number of times I've heard that people with Down syndrome are always happy. As a matter of fact, one day Ellie and I were in our favorite store (Target) and a gal probably in her 80's walked by and said "oh, look at her, she's so happy!" and Ellie's facial expression at that moment was like this: LOL!

Oh, and get this!! Ellie is going to help Change the Face of Beauty! I'm sure you've heard about this wonderful campaign started by Katie Driscoll. Back in December the special needs community was encouraged to call out companies to use people of all abilities in their advertising. Well I had sent Ellie's photo to a local modeling agency and found out last night that they want to use her! The night before WDSD. How neat is that!?!? They are called Puddletown Talent and are located in Portland. I'm so excited and they are too. I will keep you posted on that in the coming months! I'll never forget when Ellie's friend Izzy's picture was in the Target ad and my boys said "mom!!! she's just like sissy", they LOVED seeing her in the ad. I can't wait for the day that seeing people of all abilities in advertising isn't a big deal anymore. 

So the plan for this special day is to mow the lawn and follow that up with an afternoon nap then Red Robin for bottomless fries, and maybe big beers. :)

We also celebrated "Spread the Word to End the Word" on 3/4. I shared the below photo of Ellie and it was shared 418 times, I was blown away. The support from friends and family as well as strangers is humbling. I am so grateful. Thank you my friends for sharing this important message!!

A few more photos of this cute little face:

So for this post I asked Will to pick the song. He loves this song and it's one of our top picks for our dance parties in our kitchen. :) And note we chose the Spongebob version because the actual music video is weird and inappropriate!

P.S I dare you to play the song and see if you can keep yourself from busting a move, I bet you can't! Just try it!

Turn Down For What - DJ Snake Feat Lil Jon

7 Things on 3/21 - World Down Syndrome Day

We love our neighborhood!

This is our second year celebrating 3/21, World Down Syndrome Day. Looking back at this day last year I can honestly say I didn't know much about Down syndrome. I thought it would be fun to share 7 things that I have learned in the past 14 months. We have had a crash course and some of the information is really surprising! I hope you find this information interesting too. This post is also jam packed full of photos, since it's been a while and I have a hard time picking my favorites!

Princess Ellie says... keep reading, this is some interesting stuff!

1. Bear with me, point 1 is a long one but it's very important. To commemorate World Down Syndrome Day, I am so happy to announce the launch of DSDN, the Down Syndrome Diagnosis Network.  We are a non-profit group comprised of 8 mothers from across the US who all have a child with T21. We come from varying political and religious backgrounds and we believe in a pro-information stance. Our mission is to create an unbiased family-centered discussion of Down syndrome within the medical community. 

• We encourage parents to respectfully write letters to their medical providers whether they had a poor or positive experience in receiving the diagnosis. 
• We help to connect families to birth-club type support groups on Facebook. These private groups have been my lifeline and I've made friendships that will last a lifetime. 
• We help connect families with their local Ds organizations to encourage face to face support. Sometimes just hearing the words "I understand" can mean the world. 
• We have an online book of over 80 true-life birth stories linked to our site to help parents know that they are not alone on this journey. You can find Ellie's story in the "Unique Diagnosis" section. 
• We have compiled a links section to the most current and useful Ds related sites such as Down Syndrome Pregnancy, International Down Syndrome Coalition, Down Syndrome Blogs and more.

I'm so grateful to be a part of this community and am passionate about our message. You can also find us on Facebook and like our page! 

Part of my passion in getting involved in this non-profit stems back from something I learned shortly after Ellie's birth. Did you know that 90% of babies prenatally diagnosed with Down syndrome are terminated? This means only 1 out of 10 babies like Ellie get to meet their families. I researched this number a little deeper and have found that the % may not be as high as reported. The statistic is based on women who are opting to have invasive testing (like a CVS or amnio), and it does not include the women who refuse prenatal testing. So the number may not truly be 90%, but it's still high. I think I am discovering part of the reason for this staggering percentage.

Many of the moms in my online group have shared that they were pushed to terminate by their doctors when they received their diagnosis. I've also had the opportunity to talk to pregnant women who are facing life-changing decisions. One story that I can't shake from my mind was a mother I spoke with who found out her unborn baby had T21. She was 20 weeks along. The doctors informed her that her child will never walk, never talk, and will be in a group home by puberty. He pleaded with her that was unfair to her other children to bring a child with Down syndrome into their lives. He told her it was utterly selfish of her. She was heartbroken, scared, and completely defeated. Ultimately, this mother chose termination. She had complete and total trust in her medical provider. As a mother of a child with T21 I know wholeheartedly that the information she received was not true. It is crucial that the medical community is providing unbiased and up-to-date information when discussing options with their patients. The information they are providing is life altering. This is why DSDN's mission is so important to me.

2. In keeping with the numbers theme, I was also surprised when I found out that Down syndrome occurs in 1 out of 691 live births (National Down Syndrome Society). There's a misconception that more women of "advanced maternal age" have babies with Down syndrome. It's true your odds of having a baby with Trisomy 21 go up as you age, but more babies are born to younger mamas due to the amount of women having babies in their younger years (approximately 80% of babies with Ds are born to women under 35) See the below chart that shows the odds based on age from The March of Dimes.

3. Some people with Down syndrome can drive! I was excited when I heard this because it's something I have wondered about but I had no idea who to ask. Noah's Dad did a great post highlighting 7 of these drivers. He gave me permission to link the post here, Noah's Dad - Can People with Ds Get Their Drivers License? I wonder if Ellie will get her drivers license someday? Only time will tell!

Come on dad, give me the keys already! She looks so grown up here.

4. The life expectancy for a person with Down syndrome has gone from 25 back in 1983 to 60 years old today (National Down Syndrome Society) By the time Ellie is older I am curious what this statistic will be! It's amazing the advances that have happened just in the past 30 years and I have a feeling we will look back in amazement in the next 30 years.

5. College opportunities! Did you know that there are over 250 college programs nationwide that are tailored for kids just like Ellie? How awesome is that? In the weeks after I had Ellie I reached out to the Down syndrome support group on Babycenter, and met Margaret "Gary" Bender. Her daughter Alex is AMAZING. Alex is now 20 and last year she won the bronze medal for downhill skiing in the Special Olympics in S. Korea. Today she is a freshman at the University of Cincinnati in the TAP Program. I read Gary's book From Grief to Celebration in the first month of Ellie's life and it was so encouraging and uplifting for me. It was just what I needed at the time to realize Ellie's future is so bright. Alex is such an amazing role model and I'm grateful for mothers like Gary who have paved the way for new moms like me. What a community of support! There's a great site to find college programs for special needs in your area called Think College. I'm thinking Oregon State needs a program like this.... who knows what'll be available in 17 years ;) (GO BEAVS!)

Yay for college!!

6. "Is she walking yet?" I have this photo of Ellie as my screensaver at work:

I've been asked this question at least 10 times because age 1 is the average age that most kids learn to walk. Well kids with Down syndrome have their own development chart and tend to do things a little later than typical kiddos. The average age for a child with Down syndrome to walk is actually 2. I had no idea until we had Ellie! Here's a chart that helps put the range in perspective: (from www.dsmig.org.uk/pdf/downs3.pdf)
And as I like to say, Ellie does everything on "Ellie time", and she is crawling around now and surprising us daily with the things she is learning.

7. "God only gives special kids to special parents"...Well duh, Jess and I are awesome, right? We heard this sentiment A LOT after Ellie was born. To be honest, it's not true. Surprise! We are just like any other mom and dad, and it's not a stretch to say we are actually pretty dang boring. But I do believe God knew what he was doing when he gave us Ellie- special or not! Just like he knew what he was doing when we were given Will and Luke. In other words, we are just like any other family of five and I truly believe our kids were hand picked for us. And I feel very lucky that they are ours.

Our three. And no, Luke isn't wearing hair clips it's his backwards sunglasses!

Before I end this post I also have to share this amazingly beautiful and inspirational video that the IDSC (International Down Syndrome Coalition) made for World Down Syndrome Day. It is sure to make you smile! I am honored this year to have Ellie's photo picked to be in the video! See if you can find her!! (hint: she's about midway through, 2:17 to be exact) You can watch it here:

IDSC 2014 World Down Syndrome Day Video

And lastly (I promise) I woke up this morning, on 3/21 and saw that Ellie and our story made the news. My heart is full and I am feeling so grateful. You can check out the article in the Oregonian here:

The Down Syndrome Diagnosis Network Sprouts from Moms Looking for Support

My song choice came to me during my 11 hour flight to Asia last week. I was watching the movie The Delivery Man with Vince Vaughn when I heard it. I was rummy and tired and missing my babies, and it totally made me cry (what song doesn't these days?) I had never heard it before and it really made me think of my kids, I thought it was a good fit for today's post. :)

Little hands
The world is yours
Hold it close with open arms

Little feet
With miles ahead
Take it slow, see it all, take it in

Little Hands - Inland Sky 

High fives with neighbor Dani!

So? Who is the fairest??

Having fun with big brother and Eric.

Will, Luke and Ellie with Eric and FAMOUS IRIS, and Dani! xoxo

Giving big squeezes to her friend Kate.

Having fun with Kate!

It's World Down Syndrome Day!

Hangin' with my favorite guy (I'm not kidding, this girl is smitten with her daddy!)

Thanks for reading my mom's blog, I hope you learned something new today!!

Who I am - 3/21 World Down Syndrome Day

Today is 3/21, World Down Syndrome Day. In honor of this special day I wanted to share an amazing video by the IDSC (International Down Syndrome Coalition) called "Who I am" and I would also love to share with the world who our Ellie is!

International Down Syndrome Coalition - World Down Syndrome Day 2013

Ellie Lehne...

I am snuggly, I am sweet, I am cute, I am petite!

I am the apple of my daddy's eye-

I am an adored niece (with 7 uncles and 4 aunts!)

I am the most favorite baby cousin ever-

I am a pretty princess-

I am a very loved baby sister to two awesome big brothers-

I'm a movie star! Yeah that's right!

I'm an excellent sleeper!

I am my mama's world-

I am a blessing to my family-

I am a lucky granddaughter and great granddaughter-

I am who I am, I am Ellie!

Hall of Fame - The Script ft. will.i.am