Friday, October 27, 2017

This Is How We Do It - Down Syndrome Awareness Month

I am not sure why, but every aspect of my life is ruled by song. Today, like many many other days, I was singing Montell Jordan's "This is How We Do It". Because I can't say those words without singing them just like Montell. I wanted to share how we do Down Syndrome Awareness Month, which if you are my friend you are fully aware what Down syndrome is! So I like to call it Down Syndrome "Celebration" Month. Because I'm annoying like that, and we have a lot to celebrate.

Every year as October approaches I try to come up with fun ways to celebrate. In the past I have inundated friends and family on Facebook with various facts about Ds and too many Ellie pics. I've visited the boy's school and read books. Our favorite one to give to the class is 47 Strings. Some other great choices are The Courage to Be Kind and We'll Paint the Octopus Red. We always wear our cute advocacy shirts. There are a ton of wonderful businesses who make Down syndrome awareness shirts, I'll list a few here (please note I am not getting free stuff for saying this!) 
Reeve's Tees (Homies Shirts!)
Gabe the Babe & Co (Advocate, Educate, Celebrate Shirts, 47>46)
Littlest Warrior (Be Kind ASL Shirt, The Lucky Few)

This year I decided it would be fun to do a school visit for all three kids now that Ellie is a Husky like her big bros! And I wanted to show a video in each class instead of reading a book.

First stop was supposed to be Ellie's preschool class, but she was sick! So instead I sent in a copy of 47 Strings as well as the adorable cartoon called Everyone Counts: My Friend Isabelle which I thought helped explain Down syndrome in an easy way for 3 and 4 year olds. It's so cute! I had planned on giving out multi-colored goldfish, reiterating how the fish are all shaped the same but are all beautiful different colors. Just like us, although we are all different, we are still all the same. Those are still sitting in my kitchen, I plan on making a class visit in November.

My friend Cathleen who blogs over at Foursmalls used the concept from the One Page Profile and made an awesome info sheet about her cutie Sam for school! I loved it so much so I decided to make one for Ellie too. Her teacher will send a copy home with each child so their parents can also talk to them about Ellie. Here it is, and below I'll share the template for anyone who would like to use it! If it seems odd that I'm sharing the template, it's because the One Pager received a lot of attention and I have spent the past few months walking people through making their own. I finally figured out an easy way to share the template, as you can see below. I have also updated the One Pager post with the same, if you need a template for that for your IEP, IFSP, Transition Meetings, etc.

Here's the link to the template (save yourself a copy in order to edit, instructions below!)

DS Awareness Month Poster Template

And instructions to save your own copy:

Our first stop was Luke's 3rd Grade class with Ellie in tow. A friend of mine said "so in other words you brought her in like show and tell?" And yes, I did, and it was very impactful for the kids to meet her in person, play with her, read with her, and get to know her. I have one word for this experience... tears. I decided to let my boys choose what we would show to the class, and Luke chose the video "True Colors" by Matty B. His class had already read 47 Strings, so I started off by telling them how Matty B has a sis with Down syndrome just like Luke. Many of the kids knew of Matty B, and were excited to watch the video. Once the video stopped and I turned on the lights, over half of the class was in tears. They were so touched by the message. They ended the visit by singing "If your happy and you know it" and Ellie lead the class. I teared up too many times to count.

In Will's 5th grade class, he asked that we show the video "Just Like You". This one is a longer video but was great for this age group. I started off this presentation by explaining who I was, that it was DS Awareness Month and I introduced Ellie as Will's little sis. I let them watch the video first, and told them they could ask me anything about Down syndrome and that there were no bad questions. These kids could have asked me questions all day, and they had some great thought-provoking questions. For example, one boy asked if Ellie had a baby, if the baby would have Down syndrome. I told them it's a 50/50 chance. Another boy raised his hand and said "so if her baby has Down syndrome and it has a baby, what are it's chances of having Down syndrome?" I probably looked like a deer in the headlights, and Will's teacher joked "that would make you a great grandma!". The kids loved asking "what is a chromosome?", "what is the r-word?", "is Down syndrome contagious?". 

Last year the boys gave their friends something that reminded them of their sis, so Will chose "Extra" gum to represent the extra chromosome and Luke chose "Sweettarts" to represent Ellie. That one makes me giggle because I always say Ellie is like a Sour Patch Kid, first she's sour then she's sweet. Boy is that the truth! So this year I asked again, and they said "something sweet!!!", so we picked Hostess cupcakes and twinkies. Costco has a box of 32 for $6.99 and they are Halloween themed so the kids were totally excited! Sorry teachers.

What I have come to realize in the almost 5 years I've been Ellie's mom, is that Down syndrome is something that you don't understand until you do. Sounds silly, right? But when I first started talking to the kid's classes when Ellie was just a tiny baby, they had no idea what it meant to have Down syndrome. I'm watching first-hand as the kids are growing up, how they now "get it". I walked through that school that day and kids from other classes were yelling "hi Ellie!!" and wanting to talk to her and high five her. Down syndrome isn't scary and these kids love her for who she is. As she enters this school in the future, the kids will all know her already. They will understand why low tone makes it harder for her to hold her pencil, or talk clearly to her friends. But they will also understand that Down syndrome is a part of her and that she is awesome just the way she is.

As I was writing this post Jesse walked by and read the title and sang it just like Montell. So you guessed it, I have to add the song to this post for your listening pleasure, and sorry if it's in your head now! 

This Is How We Do It - Montell Jordan

Friday, September 15, 2017

Quit Shaming Me. A Letter From My Mama Heart

Do you guys remember that Unicorn drink from Starbucks? It was layers of blue and pink topped with whipped cream and sparkly sprinkles. It was pure fatty magical frothy goodness. One Saturday I was checking out at the grocery store with all three kids and the store clerk, a young man probably in his 20's, asked us what we were up to that day. "Oh we are heading to get a Unicorn drink from Starbucks, we are so excited!" I exclaimed. He looked at me in total disgust and said "I would never, ever let my 3 year old drink that, do you realize how much sugar is in those things!?" To which I replied, "Oh I know, but one drink won't hurt them, I'm just being a good mom!" 

"Keep telling yourself that" he replied.

I stared blankly at him, blinking hard.

Keep telling yourself that.

Chip away at my mama heart will ya? Keep chipping.

Just this past week I've had in-depth conversations with my mom, my mom-in-law, and my neighbor (and good friend) about what I call "mom-shaming". It is happening all around me. As if I couldn't second-guess my parenting any more; I'm faced with articles like "Your Kid is a Brat and it's all your Fault", or the article that started off by explaining that suicide rates are up 200% in kids ages 10-14, or mental illness is rampant in our children. Do you know why this is happening? It's all because of us, parents, US! We don't feed our kids nutritious food, they play too many video games, we don't play enough board games with them, we bribe them too much, we coddle them, or because they aren't outside playing enough.

Chip, chip, chip.

Full disclosure. As you know, our girl Ellie has Down syndrome. And there's one particular rule that I break, and I break it hard.
"Avoid using technology during meals, in cars, restaurants, malls"
I dare the author to take Ellie to a baseball game or a restaurant and ask her to sit quietly. I can bring coloring books, toys, snacks, and even a leash (full disclosure, remember?) and this girl will not stay with us. In the world of Down syndrome this is called "bolting" and it's a real thing. So I admit I let
 her watch her YouTube videos or play games on my phone. 

Chip, chip.

We are lucky to live in Oregon. It is beautiful here, and when it's not raining our kids are out on their bikes, on the trampoline, playing with the neighbors or building forts. Not unlike my childhood, really. And if they are in the house, we are usually relaxing, watching a movie, playing video games or talking about our day. Not unlike my 80's childhood, cough..ahem... Nintendo addict. Because with sports, art, appointments, work, and school, our life can be pretty busy. So I admit we don't eat dinner around the dinner table every single night. Wednesday night? I fed the boys mac-n-cheese with hot dogs in it. I was tired, damn it.

Chip, chip.

So, I've made a decision, I've made a stand in my overly tired mom-brain. I will continue to read the articles. I will! And I'll try to incorporate some of the good nuggets of info into my life. But only in baby steps. I really do appreciate the ideas, like playing a board game every night with the family. But you know what? This is real life. Our oldest has soccer and gets home around 7ish. We then eat a quickie dinner and check backpacks. We may sit and watch a show and then we might even have ice cream (gasp!!!) So board games? They may happen once a week, if that. And on non-sports nights maybe I'll make an effort for us to eat together at the dinner table.... I'll have to clean the clutter off the table first, though.

Moms, promise me, please? As you read those articles, don't beat yourself up over them. Maybe you are doing everything in those lists like me. At the end of the day ask yourself this, are your kids happy? Are they grateful? Are they fed? Clothed? And you know damn well they are loved. You are doing an amazing job. Now take that hand of yours, put it on your back and give it a little pat. You are amazing. 

Oh, you know what? I used that Unicorn drink as bribery for my kids to be good while I grocery shopped.


And... they had sold out of the darn Unicorn Frappuccino that day. My kids never even got to experience the fatty frothy elusive goodness.

So maybe I am a good mom, after all.

For this post, I've chosen a song from our Rockin' Mom Retreat Playlist that I get to compile each year. How lucky am I to get to do that?! Anyways, I LOVE this one. Listen to it. And moms, give yourself a break, this is the only time we have - enjoy it.

This is the Only Time We Have - Ryan Miller

Friday, May 26, 2017

How to Make a One Page Profile, Ellie Style

Last week I posted the One Page Profile I made for Ellie in preparation for her transition to gen-ed preschool on my Facebook page. Somehow the post took off and has been shared around the world! My friend Joelle saw it had been shared in Australia, how that is possible?! Since then I have received many questions from parents on how to make one. I thought it would be helpful if I listed the steps here so parents can find the information easily to refer to down the road. Scroll down to the end of this post for the template!

First, I wanted to explain how I learned about this concept. Back when Ellie was just a wee babe, I went to an event that our local group DSNO hosted on Person-Centered Planning and the One-Page Profile given by FACT
FACT is an amazing local organization, their mission says it all: "Our mission is to empower Oregon families experiencing disability in their pursuit of a whole life by expanding awareness, growing community, and equipping families." Empower. And that exactly what they do. I went to this event on a whim, more for the companionship of other parents and maybe some wine, and I didn't expect to be so inspired so early on in Ellie's life.

I fought back tears as I listened to Roberta Dunn, the founder of FACT, talk about her son who is now a young adult. She shared his Person-Centered Plan with us, and it was full of positive information about him. She explained that his whole team would come together, and they would talk about what worked and why, and they would build his plan based upon his strengths. I don't know why but it hit me hard that night, it was so uplifting and positive! It gave me such hope for Ellie's future. I remember trying to envision what Ellie's plan would look like. I never imagined our girl would be heading into a gen-ed preschool, reading like a champ, with lots of friends, and be a lover of Taco Bell and rap. Yes, I included that info, because that is our girl.

Last Tuesday I had a mini panic attack. Ellie had her "transition meeting" that Friday. The premise of the meeting is to get her whole team together to discuss her move from specialized preschool to the general ed preschool. And the gen-ed preschool is the same school her big bros go to, and she will have the same teachers they had! Her teachers, therapists and future teachers were all going to be at this meeting. I had nothing prepared whatsoever (three days before!!!) so I posted a plea for help in our private "Oregon Parents of children with T21" group on Facebook. Speaking of which, my BFF Jos and I just started this group, if you are in Oregon and are a mom or dad with a kid with DS of any age, let us know and join us! So far it has been amazing being able to share and learn from other parents on the same journey!

I received some awesome input on what to expect, what to do, and was reminded of the One Page Profile and Person-Centered Plan. I went to FACT's site and looked at the all of the examples and pulled together Ellie's document. I ended up using a site called Canva. This site is a graphic design website (and they also have an app) and it's AMAZING. 

Before I list the steps on how I created the One Page Profile, I thought I would also share the video I watched a couple of times before her transition meeting. This video was made by NWDSA and All Born In, two more wonderful local organizations, and it made a huge impact on me. If you are starting on the journey of advocating for your child's education I recommend you watch this video!

We All Belong

And now here are the steps to create the One Page Profile.

UPDATE: I have received so many inquiries into receiving the exact template that I have decided to share a link with the template, and instructions on how to make a copy for yourself! This will not work on a phone, so be sure to open from a computer.

IMPORTANT: You MUST follow the instructions to save a copy for yourself, or else you will be overriding the existing template in Canva. Follow the instructions below on how to save your own copy before you update the document.

One Page Profile Template

I have also included instructions on how to make one of your own using the same Canva Template (Sweet Carol's Velvet Cupcake Template), if you don't want to use Ellie's. There are also many other beautiful graphic layouts  to choose from available on Canva!

1. Go to Canva's site.

2. Navigate to "blog graphic":

3. The "blog" templates will pop up, scroll down until you see the one with a pink background called "sweet carol's velvet cupcake".
**Note: if you don't see it, try typing in "cupcakes" or "sweet carol's" in the search bar and then click "layouts".

4. Click on this template and you can adjust the background color, text type, add your photo, and even copy and paste the box shapes and change their sizes. Here is where you can upload a new photo:

Once you have your profile just how you like it, go up to the top of the page and hit "download".

Then save as PNG or JPG (either works great). I saved mine to my desktop. From there I printed it on a color printer at 8x10, and make sure to print extra copies for the whole team! I am also saving the profile each year so I can look back and see how our girl has grown!

Please feel free to use any of the verbiage I used if it fits what you are looking to do. Last year when I attended the DSDN Rockin' Mom retreat we had a guest speaker named Laura Buckner. I remember there wasn't a dry eye in the house, as she explained the vision statement she brought to all of her son's IEP meetings. Her son is now an adult, who lives a happy and productive life. She is an amazing advocate and mother. She told us to get out our pens and to write it down, this is it in it's entirety:

We envision Ellie living a life of choice. 
We envision her having relationships she finds meaningful.
We envision her spending her days at work and other places that she enjoys and finds productive. 
We envision her living with people she chooses to live with in places she chooses to live.

A life of choice, this says a lot doesn't it? I really loved the vision statement and tweaked it a little for this meeting, she's only 4 after all :) But I plan on editing it as she grows, but it will always remain that we envision her living a life of choice.

Please reach out to me if you have any questions. I hope this helps you, and remember our kids are entitled to an education in the "least restrictive environment". 

For this week's post, since I talked about being so emotional so many times I decided to pick an emotional song! There's just something about it that fills me with all the feels, like you want to raise your hands up and close your eyes, it's one of my all time faves

The River - Leon Bridges

Ellie's first day of school - age 3!

Saturday, February 25, 2017

As Long As It's Healthy, A 77 Year Old Pregnancy

As I rummaged through the area under the sink, my mom stood next to me nervously fidgeting with her hands. I handed her the Dixie cup and a few moments later we saw two little lines. Pregnant! I cried tears of joy and amazement “I cannot believe I get to experience this with you, mom!” She gently rubbed her belly and said “I think it’s a boy, I can tell by how I feel.” We were giddy and excited like we were sisters. I was then outside and in the distance was a sparkling water tower with bright orange pumpkins at the top. I made a mental note to take photos of the kids there sometime. It was the golden hour and the sun was shining beautifully and the light was perfect. I pulled my mom close to me and we googled “77 year old pregnancy risks”.  The next thing I remember is being startled awake by the sound of my alarm clock. I smiled to myself and thought “oh man I can’t wait to tell my mom about this one”.

That morning I did what I do every day, I called my mom. “Mom, I just had a dream you were pregnant!” She giggled and said “I better go to the casino, maybe it means I’ll meet a guy!” She always makes me laugh. So then we had a whole conversation about stories of women past age 60 having babies, I reminded her to be careful. “I wonder what a 77 year old’s risk of having a Down syndrome pregnancy would be?” we giggled some more. As I explained the random pumpkins and the water tower, she said “OK you know what is weird, I’ve had a reoccurring dream and fear since I was a little girl of water towers.” Her brothers would simply walk by her and say “water tower” and she would cry. Dreams sure are trippy, aren’t they? I wonder what it all means.

Me and my mama
I can tell you exactly why I’ve been dreaming about babies and pregnancy though, it seems that everyone at work is pregnant. The two girls that sit next to me are pregnant and have the cutest little baby bumps. We talk about babies every day. I was talking to one of the girls right before her gender ultrasound. I said “so do you think you’ll have a little sis for your daughter or a baby bro?” She looked at me and said “I don’t care, as long as it’s healthy”. Then I could see her body language shift. She said “but, I mean, if it’s not healthy that is OK too...” I could tell she had one of those “oh crap” moments, like maybe she said the wrong thing to me.

This conversation brought me back to when I was pregnant with Ellie. Every night Jesse and I have a routine of going upstairs and kissing the kids goodnight before we go to sleep. Every single night during my pregnancy with her, I would go kiss my boys and then rub my belly and say a prayer “please Lord bless this baby, and please make sure she is healthy”. I had a rough time throughout my pregnancy and always worried that she wasn’t going to make it. I had bleeding for weeks, gestational diabetes, thyroid problems, and she was in an odd position in the womb to which doctors had no explanation.

My Ellie Belly
After the birth of our girl, I remember crying to my mom. Through tears I said “but mom I prayed every night that she would be healthy.” She looked me straight in the face and said “and she is, honey.”

Ellie with Grandma
I know once you join the Down syndrome club, and you hear other moms saying how all they care about is that their little one is healthy, it can hurt a little. Like they don’t want a baby like yours. But I’ve come to realize that there is nothing wrong with hoping your baby is healthy. One thing we all have in common is that we don’t want our little ones to hurt or suffer. We are protective and love these little beings more than life itself. So “as long as it’s healthy” doesn’t bother me anymore. Because I prayed that our girl was healthy too, and she is, honey. 

Ellie and I
This week's song was one that popped up yesterday on Pandora, and I immediately sent it to my brothers. Yesterday would have been my handsome dad's 80th birthday, so of course I always think he's saying hello by sending me beautiful music to listen to. :)

Wednesday, January 4, 2017

Happy 4th Birthday Ellie

To capture 4 years into a 4 minute video was hard for me, especially since I take sooo many pictures! And do you know what really stood out as I sorted through the hundreds of photos? This. girl. is. so. loved. Wow!

Click the link below to watch the video:

Happy 4th Birthday Ellie

Happy birthday Ellie, our beloved one!