Jumping and Friendship Crafts with Evie

This Youtube video was at first made to showcase Evie's first real jump on a trampoline. Then it became a video with a message about making new friends, because I was just so impressed with how Qole gave Evie the space she needed to feel comfortable enough to say yes to getting on the trampoline.  

And then as we were making a paper craft about friendship, and we were pulling out different pieces of color, I was struck with how it became a teaching moment for my daughter that people of all colors can hold hands and can look out for each other. May it be so. The world needs it now more than ever. 

Evie's Double Whammy and Why I'm Speaking Up About Anti-Asian Racism

My first memory of really recognizing I was different was in 4th grade in a mostly white town.  I was riding a different school bus with my friend to go to her house.  A boy (whose name I will always remember) started chanting "Ching chong, wah wah..." over and over again throughout the bus ride.  I ignored him. I had no power on this bus. I was stunned that a boy I didn't know would tease me like that. I went home and told my parents, and my dad joked about it, saying next time I should tell him he speaks "Gobble Gobble." We all laughed, and laughing was what I needed that night.  I tucked it away in my memory, but I knew that the incident had bothered me.  My mom found out another time that I was being teased, and she took action and initiated what became a cultural immersion day in my elementary school. 

In middle school, a girl in my class made sure I understood I didn't belong at her table, motioning to all the other girls at the table and announcing that only those she named belonged there. She named everyone but me.  Another girl told my best friend that she couldn't be friends with her if my friend stayed friends with me. My wonderful best friend chose me. I wondered for a long time what I had done wrong to make this girl dislike me so much. I saw those as annoying middle school trials back then, but looking back, I was already experiencing exclusion because I looked different.  One could say I don't know that, but after experiencing a pattern, you just know. 

In high school, we moved to a new town, and my first day in math class, a boy patted the empty desk next to him and said, "Sit here, you look smart."  I smiled, but I felt uncomfortable with his assumption. And I got a B+, not an A (so there!!).  I was a well-behaved, responsible girl who played the violin and piano, and got good grades--mostly.  I joined the school chorus, and found a community of friends who embraced me and made me feel like I belonged. 

After going to college, there were other Asians, and I was suddenly one of many. I had actually developed a disdain for Asian-ness somehow, and went through a journey of accepting my Taiwanese-American identity and making Asian friends.  I didn't completely fit with my Taiwanese extended family (often being introduced as an "ABC (American-Born Chinese)", but I didn't completely fit with my white friends either. At college, I met other Asian-Americans who had similar backgrounds, and I felt like I could be comfortable in my own skin.*  

Recently, I shared with some people about being the only one in an airplane exit row who was asked if I spoke English. Instead of listening to me and really hearing what I was saying, a non-Asian person in the conversation chose to question my experience about whether it was really a microaggression.  They started talking about airplane protocols and basically minimizing and second-guessing my experience.  They weren't listening. I was the only one who looked Asian in that row. There could have been European travelers in that row who didn't speak English. That moment passed as quickly as it occurred. But I was shocked by how angry it made me. That is the general experience of Asians in America--minimization and invisibility.  We are taught to keep our heads down, don't make waves, and just work hard, so that we don't stick out.  We justify microaggressions against us in our heads, so that we don't need to feel bad about them. 

Did I say anything in any of these situations? No.  I was usually taken aback and speechless, and wanted to keep the peace. But no more, especially as our most helpless, the elderly, are being targeted across America, with violent acts against Asians 150% higher in incidence than previous years.  Asians of all ages in their daily lives are being harassed more than ever before, in broad daylight. It doesn't matter what type of Asian, or whether we were born in America. It is a pervasive problem that has touched every Asian in some way. 

And now I have a daughter who is Asian and who has noticeable disabilities. That could be a double whammy. People immediately notice that she has Down Syndrome. She is different to them. 

But I am teaching her that she is worthy, and I am teaching the world that she is worthy (cue our Youtube channel). She is a star. She is a child of God. She is not invisible. And when someone wrongs her, she will have the voice to speak up and say, 

"Hey! That is not how I want to be treated. I deserve better." 

She is not weak. She is the bravest child I know.  She has more joy in her pinky than most people have altogether. While she is learning, I will speak up for her. 

And so I have been telling my story, in support of my Asian community, and in support of all human beings who are marginalized, minimized and underestimated.  Just like Evie, we are all more alike than different.  

Let's work together to appreciate our differences. Our children's stories can be different. And to my non-Asian friends who want to join us in this work, please speak up and amplify our voices with us.** You can truly make a difference, just by saying, "Did you hear what Evie said? She has a great idea" or "I think you meant to respond another way, so that you're acknowledging what Evie is saying about her feelings."  Teach your children to celebrate differences.***   

I am thankful for our friends (both Asian and not Asian) who have checked in on us or have already spoken up to say that this work to combat racism is important and that we are seen and valued. It means we have hope for a better and safer world. 

Be Well,
Evie's Mommy

*One great free resource for Bystander Intervention Training: https://www.ihollaback.org/bystanderintervention/

**Many of my closest friends have not been Asian, but they celebrate my heritage and everything else that makes me who I am.  I am thankful for their friendship and hope Evie has such wonderful friends too!

***A great book about celebrating differences is "You Are Enough" by Margaret O'Hair, and inspired by Sofia Sanchez, a little girl with Down Syndrome.  

Amazon link: You Are Enough

Evie Plays with Potato Head

We are up to 121 subscribers in 2 months!  Please click Like and also Subscribe so that we can reach the 1000 subscriber requirement to be on Kids YouTube (right now we are on regular YouTube, in a vast sea of home videos. :)   We would love to have representation of kids with Down Syndrome on YouTube, so that other kids see that differences can be special! 

Thanks for subscribing and spreading the word! 

Evie's new movie channel on YouTube!

During the pandemic, Evie and Mommy have ventured into the art of making videos.  Once we became better at it, we started a Kids' Youtube channel, called Evie the Extraordinary

My goal in these videos is to show our audience that Evie is more alike other kids than different. Sure, her expressive verbal skills are slower to develop, but her receptive skills are all very much in tune, and it's so fun to show everyone how smart she is!  I mean, the kid taught herself to read! 

Evie's favorite movies we've made so far are the Ice Cream truck episode and the Juice making episode.  Today, we released a movie about alphabet foam tiles, because that's Evie's current favorite toy! https://youtu.be/-axg_FGjwz4

We'd love it if you'd like our videos and click to subscribe!  When we reach a certain number of subscribers and watched hours, then we can be included in Kids Youtube.  Think about how many kids will be able to see how Down Syndrome is just something that makes Evie unique, but she is more similar to them than different! 

Thanks for watching our show! 

Evie's Last Step--A Tubie Journey

Hi friends,

Evie is 6 years old and has had a feeding tube all her life. Yesterday was the first day ever that she had no formula put through her g-tube.  

At 5 weeks old, we broke out of the NICU (finally!) after getting a g-tube placed in her stomach so that she could gain weight at home. We started from using an overnight feeding pump and feeds every 3 hours on Pediasure formula, and praying she wouldn't spit up or set off her pump alarm overnight.  

We then figured out how to space out the feeds to transition from a NICU schedule to a real-life schedule.  

We then dealt with feeding aversion, with Evie turning away or crying when offered the bottle. As she got older, she accepted a little food by mouth, but not enough to sustain her. 

I furiously searched Facebook groups and read articles, trying to figure out how to help her leave the tubie life.  

We switched from Pediasure to Real Food Blends to let her body get used to less milkshakes and more real food. This was a huge step for her.  I think that was the scariest step--completely changing what was going into her body.  But it was worth it--her development took off after that, both cognitively and physically. 

We switched to blending her food and using a syringe to push food in through her feeding tube, and said goodbye to the pump.  She had years of feeding therapy, making baby steps in this marathon. 

After years of feeding therapy, and patience for her own timeline, she has been eating 3 meals and 2 snacks a day by mouth, and just getting supplemental formula.  Everyone agrees she is close. 

With a heads up to our feeding team, and unwavering support from our feeding therapist, we reached out to the Growing Independent Eaters (GIE) team online, and they have helped us with a plan to take the final step.  They affirmed our feeling that Evie is SO close to eating, and just needs the last push so that she will recognize hunger cues and own her independent eating.  (Side note--before GIE started, the only other programs available were long hospital stays in other parts of the country, or a famous program in Germany for several weeks, for thousands and thousands of dollars.)

As soon as school let out for the holidays, we had agreed on a schedule and a plan. When Evie says "All Done," we won't push her, and will focus on the fun of eating and spending time with us at the table.  We will point out how yummy her apple chicken blend and her cranberry sauce is, and present options.  And when she insists she is done, we will steel ourselves to say ok, and trust that she will eat like any other young person and have peaks and valleys of appetite.  

We won't see any changes (except maybe crankiness?) for 7-10 days.  Step 1 is no formula and increase water intake, and offer food every 2-3 hours.  Step 2 is no tube at all, except to maintain hydration and reduce constipation.  

For you technical parents out there, her current tube schedule has been in total:

  • 5 oz Real Food blends
  • 1-2 ounces Pediasure Grow and Gain
  • 10 oz water
Our new Step 1 schedule is:
Morning Snack, then 60 ml water
Afternoon snack, then 60 ml water
Dinner, then 90 ml water
Before bedtime snack
Bedtime, 90 ml water

I feel like we are on a precipice of a good thing, but the next few weeks will be a journey. Here are some FAQ's: 

How can you help? 

You can ask how we are feeling about the journey, what Evie's favorite food or snack is, or any other upbeat question  you can think of.  Unhelpful questions would be about whether she has lost weight or how much is she eating.  Telling her to eat all of her food is the opposite of what we are supposed to do right now. We are supposed to focus on the emotional part of food for her, to help her feel safe and willing to try other parts of eating.  You can help us focus on the fun as well, by asking her what her favorite ice cream flavors are, or what's her favorite snack/dinner food. 

How long will this take? 

We don't know. It's kind of up to Evie. But Step 1 is likely going to be 1-2 months, at best guess.  And then Step 2 also depends on how she does through cold season and whether she is drinking by mouth enough to stay hydrated (this is going to be a struggle).  It could be another year until she has the feeding tube removed. Usually the doctors like to make sure that it's a sustainable wean. Wouldn't that be a great Christmas present for 2021?

How did the last 2 days go?

Day 1 went smoothly! Just a little cranky in the morning, and then was more enthusiastic about snack time.  Day 2 was interesting--she kept asking for more breakfast and has been really happy about snack time. I'm getting good at blending peanut butter chocolate smoothies! 

Thanks for your encouragement and prayers for our journey.  Cheers for Evie are welcome! (Just don't tell her to eat all her food. :P She will eventually, and I can't wait to take her to McDonalds for whatever she wants someday!)

Evie's Favorite Masks

 Hi all!  This is Evie, and I want to share with you about my favorite masks. Mommy tried a few different types, and this is the one that I don't whip off right away.  Why is this type my favorite? I think because the ear loops fit me well and don't make my glasses fall off.  Mommy likes that they are made of cotton muslin and the ear loops are adjustable with a plastic adjuster. 

Mommy asked the Etsy shop owner if she would share a promo code with me and my friends, and she said yes!  If you search for BeWellGroup in Etsy, you can use the promo code "EVIE20" and get 20% off!!  Mommy has bought at least 6 of these for me in preparation for school.   She likes the adult version too, because they have nose wires and filter pockets.  Hope you enjoy then as much as we do!  (Mommy's note: This is an honest review and we received nothing for posting this.  We honestly really love these masks and wanted to share them with you!)

I start school on Monday with an short morning in my new classroom.  I am excited! 

Quarantining with Evie

Quarantining with a preschooler (soon to be kindergartner) is both wonderful and terrible.  Mostly wonderful. But sometimes I feel like I'm doing a terrible job as a mom and as a sudden teacher.  And then other times I feel like I deserve an award for working my full-time job and still teaching her things.  I oscillate between these feelings as fast as I find snacks throughout the day, because why not? 

Here are some things Evie has learned during this time of quarantine:
1.  How to say I Love You.  As of August, she now says, "I love you SOOOOO much!"
2.  How to dance the Robot Cha Cha, courtesy of her music teacher sending along videos. Robot Cha Cha is a made-up dance, but she actually dances to Apache, by the Sugar Hill Gang.  Every single night. 
3.  How to tell Daddy to dance the Robot Cha Cha, and make us all giggle.  Now Evie just points at her Dada and says, "Dada Dance." And then he has to dance.
4.  How to read the words "God," "love," "pray," "toe" as of April, and now as of September, I can truly say she can read most words in a board book.  She doesn't even let me read the words for her Bedtime Prayer book now. She has to read it to ME.  She is very proud of herself. 
5. Leaving the house is a source of joy when you stop taking it for granted.  We have gone to Russell Orchards, Cape Cod, Horn Pond, and countless trips to the playground once it opened.  It's been so helpful to leave the house. 
6.  To ask for the book "Peck Peck Peck," she can hit the button for "woodpecker" on her Nova Chat (if you don't know this book, it is one of our favorites).
7.  To cook something in the microwave for 1 minute. Don't worry, she's not strong enough yet to open the microwave door herself. 
8.  That her reflection is visible in the oven door and the microwave door when she wants to look at herself...all the time. 
9.  Simon Says MUST be put to song, and Mommy must sing it with the ukulele every time, and dance around until she is panting excessively because she is now completely out of shape.
10.  How to coast down the driveway on her scooter without hitting the bushes.
11.  How to pretend to count to 10 during hide and seek while totally peeking to see where Mommy or Daddy went to hide. She refuses to hide. She only seeks. 
12. How to be adventurous in tasting foods like broccoli, french fries, ribs, cheerios, and noodles. Her newest favorite is cranberry sauce--she is truly my daughter. 
13. How to play T ball indoors and tag kitchen appliances as bases.  I blame this Youtube kid: https://youtu.be/AZUAh3iA75Y

14.  Evie's vocal language has really taken off in the last 6 months.  She now independently says things that surprise me, like "Mama hug Evie" and "Purple Stars (for which pajamas she wants to wear)."  She spontaneously bursts into song, and sometimes gives a monologue that I don't completely understand.  Her favorite pastime is naming all of her plastic vegetables. It's going to be a good rest of the year as she expresses herself in so many more ways! 

Things I have learned during this time of quarantine:
1. How to transition quickly from a Zoom call with preschoolers to a Zoom call with colleagues. It should be interesting this fall with hybrid/remote learning!
2. How it is essential to have leggings for each day of the week.
3. How much I love and miss the cameraderie with my colleagues at work.
4. The many ways of spatial engineering necessary to fit food in my freezer.
5. The many items I can make with overripe bananas.
6. How short Evie's attention span is after I took the trouble to set up a game or something to cook together. (We are working on this!)
7. How much I appreciate my husband, who does his fair share of hide and seek, feeding tube schedules, bath time, feeding meals, and picking up whatever takeout I am craving.
8.  That the Netflix show Kim's Convenience is hilarious.  And how much I enjoyed Crash Landing On You on Netflix, which jumpstarted my new hobby of watching Korean dramas.  
9.  That good ergonomics are essential in keeping me feeling like an 80-year old woman after working from home.  I finally gave in 5 months later and got a new desk chair!  
10.  Seeing patients during a pandemic makes you work faster in the exam room, but has also made me ask myself how I can connect with people in the short time I have with them, and despite wearing a mask and goggles. 
10. That we are so immensely blessed to have a ray of sunshine named Evie who makes quarantining not so bad, when we are having dance parties and laughing over the little things.

And that brings us to September, my friends.  Evie starts kindergarten amidst a pandemic, but she is going to be ok.  She keeps a mask on pretty well, and her excitement for learning and her desire to see new places will carry her through the transition.  

If you're the praying type, we could use prayer for the perfect 1:1 aide (ESP) for Evie.  Her wonderful aide for preschool is not continuing with her to kindergarten, and this is another opportunity for God to provide yet another wonderful person in Evie's life.  We also are transitioning to full-day school, which is a first.  This means eating lunch by mouth in school. With the delicate balance between her need to eat enough to gain weight, and the potential distractions at school, this will likely be a key point of transition.  They are making accommodations for her, but I'm still concerned, especially as we continue to wean her off the feeding tube.  Thanks for your prayers and positive thoughts!

Jumping and Friendship Crafts with Evie

This Youtube video was at first made to showcase Evie's first real jump on a trampoline. Then it became a video with a message about mak...