Evie's Adventures in Storyland, from a sensory sensitive kid's point of view

Hi Evie fans! 

Our first post-pandemic trip was to the Storyland amusement park in Glen, New Hampshire!  Evie did well with the 2.5 hour drive--there was a lot of sing-shouting to Laurie Berkner songs on the way there.  

About halfway to New Hampshire, I had the sickening feeling of realizing that I had forgotten all of Evie's carefully calculated and labeled blended food. :(   Mom of the year right here!  Thankfully, she isn't on formula anymore, and there was a super Walmart in North Conway, so we made a stop to buy a hand blender and some prepared foods for me to blend! 

We stayed the night in Comfort Inn at North Conway. It was packed full of families, and had a mini-golf adventure right next to the hotel.  As soon as we settled in, I painstakingly microwaved a turkey dinner in the kitchenette, threw in some heavy cream, spinach, and cranberry sauce, and blended it all in a plastic Rubbermaid bowl.  Thankfully, Evie agreed to eat this as her lunch and dinner for the next two days! Breakfast was a snack-size apple pie blended with heavy cream, applesauce, and Noosa yogurt.  It did the job, but I think she was glad to go back to blended pancakes at home.  If you're a blended food mom like me, be sure to bring a travel portion of dish soap and a travel brush with you to clean your child's dishes in the kitchenette sink. We have a nice one from Oxo that I also forgot to bring!

We pre-purchased our tickets to Storyland (this is a MUST during post-COVID craziness), and we arrived about 45 minutes after the 9:30 am opening.  There are handicapped spaces right near the entrance, but we snagged the last one. The line wrapped around the parking lot, but it moved quickly and we were in within 10-15 minutes.  Evie hid her face while we were in line, but she did ok. 

GUEST SERVICES

Our first stop was Guest Services to request a Medical Access Pass (MAP).  I told the Guest Services rep that my daughter had sensory needs and she immediately took out a paper pass that had Evie's name, age, and color of her clothing on it.  I suspect that we could have asked immediately to enter Guest Services instead of standing in line to enter, but it turned out ok. 

STARTING OUT


The general advice is to go left whenever everyone else goes right after entering. That was our plan, but then we saw the big playground to the right, and it was all over! There is a big animatronic tree at the Grandfather Tree playground, but Evie just thought it was interesting, and wasn't scared. The Little Dreamers toddler play area was fun too. 


After saying hi to the animals, we then entered the castle gate,  and saw all of the rides.  The pumpkin coach ride was tempting, but there was too much time in between coaches arriving at the stop, so we moved on. 

Adults have warned us about the tea cup ride, so we stayed away from that one! The swan boats are not running this year, so we went to the Buccaneer Pirate Ship play area. 

OUR FAVORITE PLAYGROUND

The Pirate-themed playground was our favorite, since there was a pirate ship slide, some cannons to squirt water with, and a pretend ship to climb.  Evie had just filmed a Sea Shanty with Mommy, so she has been really into pirates! 

ROLLER COASTER RIDE!

We used our M.A.P. to skip the line at the roller coaster, and the wait was much shorter through the exit gate.  Evie and Daddy sat in the front seat, and Mommy sat behind them so I could scream!  The ride was pretty short, but enough of a jarring and thrilling experience that Evie needed a nap afterwards.  She didn't seem to love or hate the roller coaster ride, but it seemed like it was definitely a stimulating experience for her. 

BRING YOUR LUNCH, OR YOU WILL BE SAD!

Having been warned by our local Down Syndrome community to pack a lunch, we packed some $5 wings, fruit salad, chips, and drink in thermal bag.  We lunched away as we watched people stand in long lines to buy their food, while their children cried that they were hungry. Thanks for the tip, friends!  

SENSORY TIPS

On the sensory tips brochure from Storyland, they list the picnic tables behind Pablano Cantina as a quiet place to eat. While it is shady and a little removed from the crowds, it is not quiet, because you can hear the announcer on the carousel ask everyone to yell "Giddyup" every few minutes.  They also list a Calming Room, which was essentially a room with four walls and some seating and air conditioning.  We didn't need to use this, but glad to know it was there.  There is a storage area for coolers as well, but our stroller had everything we needed.  Something I greatly wished was that Storyland could have larger diaper changing tables, and not just in baby areas.  One day, Evie will be too tall for the baby changing tables, and we would have a hard time finding a private and comfortable place to change her, if she is not yet fully potty-trained.  But I hope she will be next time we go! 

Afterwards, we also rested at the World Pavilion while Evie took an almost two hour nap in her stroller!  The indoor food places like Food Fair were still closed, so the table area outside easily had available seating.  We enjoyed watching the Egyptian-themed splash battle, where kids and adults rode in Egyptian ships and squirted water at each other.  The Hawaiian ice stand was a welcome treat when it got warmer. 

Evie didn't seem excited about the Flying Fish or Turtle Twirl, but she seemed to tolerate the Train ride around the park.  This is a good way to get to other parts of the park, or just to get an overview of what is available. 

Right next to the Oceans of Fun Train stop is an ocean play area. It's a great place to cool off too. We skipped the fast Bamboo Chutes and the Raft Ride--those seemed more like big kid rides. The antique cars would have been fun, but Evie just wanted to go back to the Grandfather Tree play area, so we enjoyed the playground one more time, while Daddy stood line to buy Mommy some fried dough (highly recommend!). 

Overall, we spent 6 hours there, and it was such a fun day!  For a kid who doesn't like loud noises or crowds of people, Evie did great. And do you know what my little stinker asked me later that evening?  "Mama, want to go to park today."  My response?  "Evie, you went to about FIVE playgrounds today!"  And then I went to go rest my tired feet. 

Next year, we may consider Santa's Village, which is nearby and supposed to be lots of fun too! 

Here's a video of our time at Storyland!  Please Like and Subscribe to our Youtube channel "Evie the Extraordinary" so that we can continue to increase representation of kids with Down Syndrome on kids' media.  We would appreciate your sharing and spreading the word! 




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:
Breakfast
Morning Snack, then 60 ml water
Lunch
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! 


Evie's Adventures in Storyland, from a sensory sensitive kid's point of view

Hi Evie fans!  Our first post-pandemic trip was to the  Storyland amusement park in Glen, New Hampshire !  Evie did well with the 2.5 hour d...