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

How to Make a One Page Profile, Ellie Style

Before I outline how to create your own One Page Profile for your child, I wanted to share with you why I think this concept is so important for our children.

About 5 years ago I attended a learning session on how to create a Person Centered Plan and the One Page Profile. Roberta Dunn, the Founder of FACT was leading the session and it was so eye opening for me. Person Centered Planning is a positive, strengths-based approach to mapping out your child’s future. Your child's team comes together to create strategies to help them be their best self, as well as find solutions for support in the areas where they may be struggling. And as Ellie grows, she will be driving this process of determining her future. 

Roberta explained that this method can be used when your child enters a new grade, moves to a new school, if they are transitioning from Early Intervention into the school system, or even going to a new daycare. In any situation where you want your child's team to have a better understanding about your child this would be the time to use it.

It begins with a Vision Statement. The Vision Statement I used in Ellie's One Pager was courtesy of Laura Buckner. Laura was our keynote speaker at a DSDN Rockin' Moms retreat. I remember there wasn't a dry eye in the house, as Laura 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 her One Pager, she's was only 4 when I first made it after all :) But I plan on editing it as she grows, but it will always remain that we envision Ellie living a life of choice.
I also wanted to share the link to the Person Centered Planning information from FACT. It is a wealth of information and I highly suggest reading it. I poured over many One Pagers to create Ellie's, it's so helpful to see what other parent's are doing.

Another tool that inspired me was the video We All Belong which was created by NWDSA and All Born In. I sent this video to Ellie’s teachers, therapists, and the school Principal. It’s very impactful and I believe will help to reiterate your vision for your child.

And now I will walk you through how to create a One Page Profile for your child. To create Ellie's profile I used a graphic design website called Canva. There are many other templates in there if you don't prefer the one I made. I will list below how to take the existing template I created and edit it to your child's needs. Please reach out if you get stuck or have any questions!

Step 1: Canva finally updated their system to allow for "templates" so no more worrying about making a copy first! WHEW! I have provided the template link HERE. I have also included a white version with black type to help reduce ink wastage if you'd rather have a white one! Find it HERE.

Step 2: A new template will open, you can edit this copy as you please. And every time you log in to Canva it'll be there. So each year you can make a copy and create a new profile and only update what has changed!

Step 3: You can rename your template here:

Step 4: Start with your child’s pic, their adorable face will be looking back at you as you write down all of their amazing strengths!

To add a photo into the photo area, click on the left hand side under “uploads”.

Once you click under “uploads” you’ll see a button for “upload your own images”. Click here and add your child’s photo. From here you can drag and drop the photo into place.

Step 5: Background Color. Click on the left hand side under “background” and choose a color or pattern that you like.

Step 6: If you would like to change the font, highlight the text you'd like to change, then the font box will pop up. Here you can edit the font type as well as size.

Step 7: Edit the text. If you want to change up what the template says, click on the text and a text box will appear. Here you can go in and edit as needed:

Step 8: Are you all finished? Now it’s time to save off your masterpiece so you can print it! Go up to the “download” button and save as either a png or jpg. I have printed both options and they are similar in quality!

Step 9: I always end up saving the copy to my desktop so I can find it easily. I have used a printing service (I uploaded the document directly to the printing site) to make color copies, or just printed on our home color copier.

Step 10: Now you are ready to share with your team! And as I mentioned above, in Canva your template is now saved, so next time you log in you can go to File: Make a Copy and edit your One Pager each year as your child grows! It’s fun changing it up and seeing how your child has grown.

A few helpful tips: Don't edit from a phone. A desktop is your best bet. Also, your internet browser can change the font! I prefer to use Google Chrome.

I always end every blog post with a song. There's just something about this one 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!

Don't Poke the Mama Bear - My First Letter to the Editor

Last Friday we had Ellie's planning meeting with her whole team; Early Intervention, Physical Therapy, Occupational Therapy and Speech Therapy. We were discussing what will happen when Ellie turns three in January. Thinking of school, learning, bus rides, and making friends makes me sweat and want to stress eat. I went into the meeting feeling nervous and unsure, but by the end of it we had a wonderful plan in place for Ellie and I felt lighter, hopeful even. The positive feedback I received about how she's doing was so reassuring. Her team believes in her and they truly think she will to rock it when it's time to go to school! WHEW!

But this leads me to a letter to the editor that I read the week before Ellie's big meeting. My good friend and fellow Rockin' Mom Jenny shared it with me. Jenny lives in Pennsylvania and this article was published in Grants Pass, Oregon. The post was titled “Special needs kids don't need to be in classroom” and it was written by a woman named Betty. I doubt Betty expected her letter to go viral, but it did. Below you can see the newspaper clipping for yourself, please read it and let it soak in for a minute.

"Ride the small buses?" As you can imagine, I was disturbed by Betty’s letter. Actually disturbed isn’t the right word, I was just plain pissed. Just when I feel like we are getting somewhere with inclusion and acceptance, something like this has to come along and punch me in the gut. I decided to contact the editor of the Grants Pass paper with my rebuttal. My fingers were typing faster than my brain could even work and I quickly sent off an email to him. Soon after I received a reply stating that their letters have a 250 word limit, and my letter was 483 words. Oops. The editor said he would like to share my opinion but I would need to refine my letter, which I did.

I also explained to him that I thought Betty’s letter should not have been published in the first place. I think it's discriminatory. He confirmed that he agreed that it showed this woman’s ignorance but that her opinion was still just that, her opinion. I strongly believe that had Betty singled out any other race or group of people that the letter would not have been published. I checked in on the paper's Facebook page and found that the visitor posts have been blocked. There were many insightful and some angry posts from across the world, all aimed at Betty. I think it became too much for them to manage. I'm curious to see if the paper has any follow-up on this, such as an apology.

Below is my letter to Betty. I sure hope she had a chance to read it and that she reads the other letters that have come in. I also have to give a shout out to my friends Andrea and Lisa who found me a copy of the paper- this particular newspaper is only readable online if you have a subscription. So thank you my friends for getting it for me!

I realize this is just the beginning of the adventures and hurdles I'll face while raising Ellie. Seeing the responses from fellow Rockin' Moms and other parents of kids with special needs makes me realize how lucky we are. We are so blessed to have our kids in this generation, and not in the generations before it. I have a sneaking suspicion Betty grew up in a time when those who were different were either institutionalized or hidden away. I truly hope she has a change of heart. 

For this post's song, I chose an absolutely beautiful one by the band Gungor. If you have a child with special needs I urge you to listen to it. Michael and Lisa Gungor have a gorgeous little girl with DS named Lucette, which means "light". When I first watched the video it brought tears to my eyes and a flood of memories back to the day of Ellie's birth. The emotion in Michael and Lisa's faces is so familiar to me. I can see the fierce protective love, mixed with a fear of the unknown. After reading their blog I found out they also had a birth diagnosis. Their birth story is worth the read, and it'll surely make you cry. Ahh, it's just amazing.

And Betty, I doubt you will ever read this but I think you should listen to this song too. All children are amazing gifts who deserve only the best in life. 


And the blind gained sight
As we met our light
Oh the joy and fight
The gift of life

Your hands, the creases
Your feet, your breathing
You're mine, you're perfect light

Light - Gungor

A Little Dream with a Big Message

For some reason I don't remember my dreams all that often. It seems like when my alarm beeps sharply at 6am, all dreams leave my subconscious. But on the weekends when I'm allowed to wake up when my body clock says it's time to, I tend to be able to recall what I was dreaming about. I wonder why that is? 

This morning I woke up smiling and my heart was full and happy. I had a short little dream, and it was about Down syndrome. I don't tend to dream about Down syndrome really but today was different. My dream was about pregnancy and babies with Down syndrome. I woke up with the words "inclusion in the womb" in my head. In my dream, I lived in a whole new world, where parents who were finding out about Down syndrome are not gutted and devastated. Where doctors weren't pushing termination as a first choice. Where these babies were celebrated, wanted, and loved. Parents who received the diagnosis were genuinely OK, and were excited to welcome their unborn child.

I am part of a private group on Facebook for women who are pregnant with a baby with Trisomy 21. Most of them are going through all the same emotions I did when we received the news. They are worried for their future, as well as the future of their baby. They are worried for their other children's future, how will it affect them? What about potential health issues? Will their child do OK in school and be included? Will they go to college, or get married? Their pregnancy is not what they dreamed of and each mother is grieving in her own way.

What I also get to witness is the fear that crumbles when these mothers meet their children and gaze into their eyes for the first time. The love that binds these mothers to their children is undeniable and powerful. They look back and wonder "what was I so afraid of?" Every. Single. Time. It's amazing to hear about the father's and their love for their children. The fierce protective love that these dads feel, it always overshadows any preconceived notions they had when receiving the diagnosis. And not to mention the special connection these new babies have to their siblings. It is something quite magical and I get to see it daily with Ellie and her big brothers.

Who knows what the future holds, I just know that I wish with all of my heart that this dream could become a reality someday. I've had a few prophetic dreams- I dreamt of my pregnancy with Ellie as well as her diagnosis. I can't help but hope that this dream can someday become a reality too. I'm not saying I'm psychic by any means (haha), but I am already seeing a shift in perceptions. It's a slow process but it's happening. Maybe someday it'll be true, and I hope I am here to witness it when it does.

I have to end every post with a song and this one has been on my mind lately, it's a good one.

A Change is Gonna Come - Sam Cooke