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. 

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:

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:

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!