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!

The Best Advice I've Received

It's been two years already since we welcomed Ellie into our lives, with her little extra somethin' somethin'. And in these two years I have received some amazing advice; "be kind to yourself", "don't project into the future, enjoy each day", "milestones, schmilestones", "don't compare", "don't limit her", "admit when you need a break", and "follow your gut". The last one has proven to be an important one. But the one that has really stayed with me was given to me less than a month after Ellie was born. Let me explain how it all happened.

Somehow, the Down Syndrome Network of Oregon heard about Ellie's birth diagnosis and they wanted to give me a Basket of Hope. I had no idea what this meant, and I hesitantly agreed to meet a local mom. We chatted over email and I found out she had a son named Jacob with Down syndrome, he was 13 at the time. They planned on coming over to meet Ellie, and so I could meet Jacob.

Meeting Jacob would be the first time I had actually talked to someone with Down syndrome. I was nervous and I asked my mom come over to meet them with me. Come to find out, in a fateful sort of way, this mother lived a couple doors down in our neighborhood just a few years before! And now they live only a couple of miles away, I love when this stuff happens! She and Jacob and his older sister arrived and were so welcoming and sweet. Jacob was tall and lanky, considerate and well spoken. I'm ashamed to say it now, but upon meeting him I realized I had some serious misconceptions about what the diagnosis meant, and I had a lot to learn. He was so sweet with Ellie. He held her carefully and he brought tears to our eyes when he said quietly "you're like me". 

Jacob's mom was laid back and easy to talk to. I felt like I had known her my whole life. She asked me what we liked to do for fun, and I told her our favorite things were entertaining and going boating. This was when she said "so, you like to throw parties? Keep doing it. You like to go boating? Keep going boating." It was as simple as that. It was a defining moment for me. It's hard for me to explain but I felt lighter, like a weight had lifted off of my shoulders. I kept thinking our lives were forever changed when we found out about Ellie's Down syndrome. She went on to explain how therapy is important, but to not let it rule your life. Real life, Ellie being home with her brothers, going on the boat, spending time with family and friends doing regular things is just as important as therapy. 

Since meeting her that day I think about her words often. I get caught up (a lot) in wondering if I'm doing the right things. The list of therapies available is as long as my arm, and the list of vitamins and supplements she could be taking is huge. She doesn't just get a gummy vitamin like her bros, I'll admit that, but I really have to take a step back quite a bit to make sure I'm not spinning out of control with the research. We have a smart happy little girl who is a complete riot, who loves partying and she absolutely loves boating. Our life as we know it is pretty dang good, and I'm so glad I had this seasoned mom to remind me that things only would change for us if I let them.

Next weekend I get to deliver a Basket of Hope to a new local mom. I have to mention how grateful I am to the Down Syndrome Network of Oregon to give me this opportunity. Receiving that basket two years ago meant the world to me. I am so giddy to be able to meet this mom and her beautiful new baby boy. We have been in touch over the last few months and I feel like I know her already. Actually, there were two new babies born in the area on the same exact day, how awesome is that!? I just have to say it, welcome to the club new mama's!

This week's song is just a random one I love, and below is a photo of our big 2 year old. I will do a 2 year Ellie update post soon. :)

Where Do the Children Play - Cat Stevens

So How's She Doing? An 18 Month Ellie Update

Our girl is 18 months old! Where has the time gone?? It's been a crazy few months around here. Ellie is learning something new every day and is still amazing us every step of the way. I also have to mention that she is so much fun, so easy going, and has developed a hilarious personality. She is also as sassy as can be. We are having so much fun with her and she's definitely our "go with the flow" kid. 

This post will mostly be a pictorial recap but will include info on how she's doing with milestones, as well as some of the fun things that have happened since March.

In June we went on a weekend getaway with our besties and it was a blast. There were 6 adults and 7 kids. We spent our days swimming and relaxing, but Ellie was sick with croup followed up with an ear infection backer, poor baby. She is a really healthy girl except for that darn croup. I think she's had it 4 or 5 times already.

At the doctor's office- what a faker!

Croup... there it is....

Mom I just am not feeling like my smiley self...

All the kids together, looking so grown up.

We also went to the beach in June with my side of the family. We had two special guests, my niece Chelsea from California and my niece Presley from Texas. We had so much fun and we laughed... a lot. And we also ate and ate and ate. There's nothing like my mom's cooking!

Ellie and Chelsea

Ellie and Presley

Ellie and Auntie Di Di 

The dudes.

I was able to get a new photo for my mom of all 7 of her grandbabies. It's the first photo of all of them that includes Ellie, I think it turned out cute. Sorry mom, you are seeing your Christmas gift early!


And we got a sweet one with Grandma...

We also welcomed home my sis-in-law and nieces and nephew from Vietnam. They are visiting for 7 weeks and we couldn't be more excited! We have been able to spend some good quality time with them the past couple of weeks. It's so heartwarming to see the cousins together again, there's been a lot of hugs and snuggles.

10 months in the making!

Last time Ellie saw her cousins she was only 9 months old!

We also had our annual 4th of July party that keeps getting bigger by the year. We had about 120 people I think, and roughly 20 people stayed overnight and camped. It was a blast!

Being sassy as usual

Ellie and her beautiful friend Amora

The morning after...

We've also been going boating quite a bit, Ellie already loves the water. I can't wait to get her into swimming lessons! This is the favorite part of our summer and the weather has been beautiful.

Yes that's famous Iris! These two...

Some other fun stuff that has happened:

Ellie's story was posted on the IDSC Site-

The IDSC - Meet Ellie

And one of my blog posts (I Have One Too) was in an online publication called Special Miracles. Below is a photo of the magazine, it's so cool! I had to order a copy to save for Ellie when she's older.

Oh! And the book that my amazing friends Jen Jacob and Joelle Kelly put together has been published and is available on Amazon- {Unexpected} Jess and I bought our very own copy! Ellie's story is in the "Unique Diagnosis" section. You can read the stories online as well: Unexpected - Stories of a Down Syndrome Diagnosis

The same blog post was republished on a site called The Mighty. I feel very blessed that it was shared. Here's that inspirational site:

The Mighty - I Have One Too

We also had Ellie's 18 month well baby check-up. Her doctor was so pleased with her progress! And I have to say, I absolutely love her Pediatrician. He is so good to Ellie and is SO, so so patient with me and all of my neurotic requests, emails, and phone calls. He always listens to me and supports me in what we are doing with Ellie in regards to vitamins, therapies, etc. I feel lucky he's on our team! 

Her stats below are based off a typical baby growth chart:

Height: 32" (57%)
Weight: 21lbs 11oz (12%)

She's still a long string bean and her doc is happy with how she's doing although she is pretty tiny weight-wise. She has fallen quite a bit in height, she was 80% at 15 months.

I have requested a sleep study because I've read that our kids are prone to sleep apnea. I'm not sure when that will be but I have a feeling tonsil and adenoid surgery will be in our future. Luckily many of the rockin' moms in my group have already been through this with their kids so I know what to expect. 

Quite often I'm asked what supplements or vitamins I am giving our girl. This part of being a mama of a child with Down syndrome is a constant struggle... it's a doozy if you ask me. There is way too much info out there. At times I want to just throw in the towel and do nothing, but something in the back of my mind tells me to "try it". I don't know if what we are doing is the right thing, so I rely heavily on my gut instinct and I read... a lot. And I stalk people on Facebook and ask them a million questions. Ohhhh the people I stalk on Facebook! I truly feel like every child is different, and this is what is working for us right now. Mom's of typical kids probably think I'm crazy for giving Ellie all of these supplements. Mom's of kids with Ds are most likely thinking the same thing or may wonder why I'm missing x,y,z! Please feel free to ask me anything, or school me on something you think is important. I'm always open to learning more!

Here is the ever-growing and evolving list:

• DHA with D3- Supports brain health, and we live in Oregon so vitamin D is important!
• Raw Probiotic- Gut health
• Nutrivene (reduced dose)- A multivitamin that is specially formulated for those with Down syndrome. I give Ellie less than the recommended dose because I feel that is the best for her, so my supply has lasted a long time!
• Choline- For cognitive function- she has been on choline since around 1 year old.
• Ginkgo Biloba- For memory/concentration, she only gets a sprinkle at this time.
• Acetyl L-Carntinine- Boosts physical and mental energy, helps combat low tone, she is only getting a sprinkle of this as well.

I also add a teaspoon of coconut oil to her last bottle of the day. We cut out dairy and were amazed at how Ellie's constant boogery nose went away- completely! It has helped SO much. She still gets yogurt every once in a while though. 
I sneak in Miralax to help with constipation but only when it's absolutely necessary. We try to combat this issue (a never-ending issue) with natural remedies like prunes, prune juice, fruiteze, etc. She also gets chia seeds when I remember. 

I requested blood tests at her 18mo appointment to check her thyroid. We are going to a naturopath named Erica Peirson once all the test results are in. Her website is here: http://www.downsyndrometreatment.net/
How lucky are we to have a doc in Portland who has a child with Down syndrome? She is a very highly regarded doctor among the online Ds community so I'm lucky to have her so close. I will post the results of that appointment after we go in August. Dr. Peirson feels that almost all children have thyroid disfunction so I'm curious to see how Ellie's numbers are!

Milestones:
Songs: Itsy Bitsy Spider, Pat-a-cake, Head, Shoulders, Knees and Toes (working on knees and toes!)
Crawling fast and furious
Standing with support
Hugging and loving on her baby, giving pats and feeding her
Signing "more", "eat", "bottle"
Saying 10-15 words: kisses, owl, what's that, up there, eyes, apple, Anna, Papa, Dada, and Ellie!
At her EI/OT/PT evaluation they said she's advanced socially. It made me laugh and I'd have to agree, she's such a HAM!

Struggles: 
Ellie is still eating most of her milk from a bottle. I am able to sneak in a cup of juice in her straw cup every now and then, but she loves her snuggles/bottle and I'm having a hard time giving it up as well! She also refuses any foods with texture. We are not eligible for Speech Therapy yet, but our new OT is giving us some great pointers. We are also learning as we go and I rely heavily on moms who have been there and done that for advice! We need to work on her feeding herself finger foods as well as chewing foods with texture.

Ellie's Gross Motor is really lacking. She cannot pull to stand, and can stand if holding onto something. She can crawl, but only army crawl. She has a hard time getting her belly off the ground. Taking her first steps is in the distant future I think. At her appointment I had to fill out an evaluation form, I call it the "Debbie Downer Form"...

Wah waaaaaah!

It's OK though, she's doing everything on Ellie time. I actually didn't feel too upset when I was checking the "not yet" box, because she is rocking it in other areas. We take our victories where we can get them! I'm so proud of how she's doing.

Below are more photos... I think I have a serious problem. I just checked and in June and July alone I took over 2500 pictures. I have a hard time picking my favorites and I have this neurotic fear that if I don't photograph it then I won't remember it! Ahhhh!

Friends trip to SunRiver...

One of my all time faves.

Selfie at Enchanted Forest

More photos from the beach:

More boating photos:

We heard this song while we were out on the boat, and I'm always paying attention to lyrics because I'm weird like that, so I thought it fit this post perfectly. Plus it's Will's most favorite singer of all time! Thanks so much for checking in on our girl. xoxo

Feel That Again - Jason Aldean