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

Shaken, Not Stirred: A Stafford Family Update

As I sit here on this snowy Thursday night, drinking some cheap red wine, I had the realization that I have only posted on this little ole' blog four times this year. That is a huge difference from the first year we had Ellie, I had posted 22 times in 2013. 22! That's almost 2 posts per month. And I remember when I started blogging, my whole intention of sharing our life was to maybe help one family receiving a Down syndrome diagnosis, to show them that it would be OK. I also remember thinking back then.. "there sure are a lot of blogs about babies and young kids with DS, and not many about older kids"... My imagination lead me to wonder if this was because it got harder as our kids grew, maybe it was harder to talk about? Too overwhelming to share? Is this why the blog posts fade into nothingness?

Truth? For us it hasn't gotten harder. It's gotten really "normal" to be honest. I don't have anything exciting to report on my little blog. We are a family of 5 and we are so dang busy that we've resorted to eating Taco Bell 4-5 times a week. I probably shouldn't admit that, huh? Yikes. I'm juggling work, Jesse's new adventure, Will's tournament basketball team (basketball 5 x a week! seriously), Ellie's appointments as well as trying to encourage our little artsy "cream in our cookie" Lukey Lukester.

So in regards to Jesse's new adventure. I have to tell you a story. If you know me at all, then you know I'm very "woo woo". Jesse has had a dream of owning his own liquor store since he was a kid. I'm not kidding. While we all were playing "house", "cars" or "teacher", Jesse was playing "Liquor Store". He had a cash register and mini bottles that were his Grammy and Papa's. He would sell the mini bottles to his make-believe customers. Who does that!? 

He tried for over ten years to be appointed to a store. He was told no over and over again, but he never gave up. Finally this past September he opened his own store. He has been working 80+ hours a week and business is growing every day. He is truly good at what he does and watching him with his customers makes me so proud. 

Leading up to this we had many little angel winks, including Luke asking the Magic 8-Ball if daddy would get a store and it said "All Signs Point to Yes", my mom found a little black cocktail recipe book that was her dad's on the day Jesse found out he got the store. The first recipe in the book? "Angel's Kiss". Thanks Grandpa Lehne for the blessing! After feeling like maybe owning a store just wasn't meant to be it finally happened. 

I can't forget to mention that a psychic told me Jesse would get the store, hehehe. She nailed it. Too funny huh? Side note: she also said my dad plays songs for me and he loves that I notice. WOAH! Goosebumps! He plays songs for me all the time and you wouldn't believe the eye rolls I get when I mention that my dad in heaven is turning the radio dial. 

The Recipe Book, note the 3rd one down, LOL

Front of the Store

At Daddy's New Store

To make it even more fateful, Jesse and I met when we were 18 and lost contact at age 19. Guess where we were when we saw each other again 5 years later? You guessed it, the Liquor Store. That was where we rekindled our love! I have a whole story about that encounter but seriously, it's where it all began!

And now an update on the kids!

Will is 9 now and is doing really awesome at school. He is drawn to all things sports and plays soccer, basketball and baseball. Right now he's on a tournament basketball team and they got first place last weekend at their tournament! He is really tall and loves to compare his height to mine. His favorite things are playing outside especially with the neighbors and being a comedian 24/7. He is so much like his uncles that it creeps me out sometimes. 

Champs!

Oldest and Youngest

Luke is 7 and has been really exploring his artistic side. I'm so so proud of him! He has his own art instagram and has been doing the CHAP art classes every month. He is so creative and amazes me with his artistic ability. He was asked to be part of an online gallery called childish. I asked him if he wanted to do it, and he said he absolutely wanted to! So stay tuned to see his "Happy Trees" art being featured! He also had his first commissioned piece and made $10, he was pretty stoked!

Luke

Focused

Luke's "Mother and Baby" his first commissioned piece!

Ellie will be turning 4 in January. I can't even believe it, our baby! It's been a whirlwind trying to figure out what's going on with her legs. She still walks sideways and drags her smaller leg behind her. She's been to a couple of specialists and we are trying to determine if it could be Cerebral Palsy. Our last stop is the Neurologist and I'm just waiting to hear from them to make that appointment. She had thumb surgery in September which was a success also! 

After Thumb Surgery

She and I were in a documentary and that was fun to do together. I think it turned out pretty great and I can't wait to share that after the new year. She also had another photo shoot for Fred Meyer and looks so cute! This ad not only ran in the local Freddy's ads but in the Kroger ads nationwide! My friend Kelly in Texas picked me up a bunch of copies!

Latest Fred Meyer Ad

Ellie also did a calendar shoot for FACT with her Uncle Danny! He will be getting a framed copy of the ADORABLE pic for Christmas, I can't wait!! When I asked him if he could be a model with her, he said "Tiff, God answers prayers in ways we don't expect. I've been praying a lot lately and then you called me to tell me this!" Oh man he makes me smile!

FACT Calendar

Dressed up for Christmas Pics

So really the whole point of this post was really no point at all. I just thought I'd check in and write down what has been going on! I should mention that I have been a really really really bad friend, sister, daughter and wife lately and I'm sorry for that. I am so lucky though because most of you still love me. I'm terrible about setting up dates and checking in. It will get better I promise, once we get out of "survival mode" of owning a new business. And once I can get more than 5 hours of sleep a night! I'm tired! 

I also have to mention how grateful I am that my mom and mother-in-law have been so helpful and loving and supportive. Cooking meals, folding laundry, even cleaning toilets. Seriously big huge hugs and loves are going out to those ladies who keep me from completely losing my you-know-what. I love you! More than you know!

For this week's post I'm putting a very random but special song to our family. It is one that is often playing in the background when we are cooking dinner or hanging out. Every time I hear it I just think of my sweet little crew and it makes me smile. I'm getting a record player for Christmas and found this on vinyl for $2, it shipped yesterday. I can't wait to listen to it on Christmas day. Ahhh so excited!!!

xoxo

Angel From Montgomery - Bonnie Raitt & John Prine

I Missed My Flight and So I Stayed

I haven't posted in a couple of months, time seems to be slipping right through my fingers. This is going to be another pictorial recap of September and October. We have had a whirlwind of a time I tell ya, with the Buddy Walk, a once in a lifetime family vacation to Hawaii, Halloween, Ellie whistling like crazy and her health update! And she's going to be 2 years old in two months!

The boys started school in September, we have a Kindergartener and 2nd grader now. Luke rocked his purple shirt, tie, and purple Nikes. I still remember to this day the way I felt when I started Kindergarten. Horrible butterflies and a sick feeling in my stomach. A feeling I still get to this day when I have to do something new that makes me uncomfortable. Luke on the other hand is nothing like me in that way, he was excited for his first day.

We had Ellie's Buddy Walk, it was amazing. We had a big group of walkers and it was an absolutely beautiful day. I had set a goal to raise $1,000 for the Down Syndrome Network of Oregon. We ended up tripling it and we raised over $3,000! I couldn't believe the outpouring of support from my coworkers, family, friends, even some of my new online friends that I have yet to meet in person. We are so grateful. Thank you to those who donated and joined us in our walk. It means the world to us.

In September I had a little mom's get together at my house to talk about my appointment with our Naturopath Dr. Peirson. Having local moms to talk to in person is so important. The kids all play so well together. We spent most of the time talking about our stories and how we received the Ds diagnosis. There's something I have noticed in many of the stories I hear. I've heard stories about years of fertility struggles and then all of the sudden they were pregnant with their child with Down syndrome. Or they weren't expecting to have anymore children and "surprise!!" there they were! Or the dream thing, one of the local moms I chatted with also had a dream of their child before they were born. There's just a little shred of magic in these kid's conception and I am always left in awe. I wonder what that's all about... hmmm...

Speaking of my mom support, I am planning to meet many of my online rockin' moms in 2015. I'm so excited I can hardly see straight. I'll be going to a conference in June and I'm hoping to go to a retreat in September. I've made so many lifelong friends thanks to Ellie and I'm so grateful.

A couple of fun things that have happened recently, I had another blog posted on The Mighty, I sure love that inspirational site!! It was the one where I wrote about my big bro Danny and Uncle Dave.

The Mighty also made a shout out for parents of children with Down syndrome to share their thoughts about raising a child with Ds and somehow my quote was picked. How cool is that? These 24 People Have Advice For Any Parent Who Just Received a Down Syndrome Diagnosis.

I also entered Ellie in a photo contest for an awesome site called Stand Up For Downs. They use humor and comedy to raise money, awareness, and get people laughing. I can so appreciate their mission. They had a funny picture contest, and we could have won $1,000 to the charity of our choice! I was hoping I could raise funds for our non-profit (the DSDN) and we were SO CLOSE at 5^th place!! The winner totally deserved the #1 spot, you have to see the photo that won it's hilarious. Here’s the picture I submitted, it makes me giggle:

October was also Down Syndrome Awareness Month. I did this little photo of Ellie to celebrate. I actually printed this at Costco to hang in her room. Her face just kills me, she's so darn kissable!

We also went on a trip to Hawaii to celebrate Jesse’s Uncle Jack. He turned 60, and he is by far one of the coolest dudes I know. It was a big group of us, my in-laws, Jesse’s Grammy, along with our family that moved to Vietnam last year. It was soooo relaxing and so wonderful to watch the cousins together again. The boys were so excited for their first time on an airplane. Ellie traveled like a champ and made friends everywhere we went. We drank lots of mai tais and ate really good food thanks to the cooking skills of my sis-in-law Dani. There was lots of swimming, sunning, and giggling. This was a trip we will remember forever.

As we were exploring the island I kept thinking about the people that live there. Everyone seems so relaxed and friendly, it has such a laid-back vibe. I wondered what do they do for a living here? How much does it cost to buy a home? Could we pick up and leave and come live here and never go back? “I WISH!” Jess and I kept saying. When we were sitting in Uncle Jack’s backyard (I mean back sand.. on the ocean, not really a yard)… I told him how I completely get why he lives there. It's paradise! He then told me that 28 years ago, he was 32 years old and living in Oregon. He went to Hawaii to visit, and upon returning home had missed his flight. Oops. “So I stayed” he said. Just like that. He never looked back. He just decided to stay in Hawaii and he’s lived there ever since. See? Dude.

Uncle Jack with his great nieces and nephews in his backyard :)

He’s awesome and it was so great to get to know him in his element since we usually only see Uncle Jack when he's in Oregon visiting. He took the kids for rides in his yellow car, gave lots of noogies, and snuggled Ellie up a ton. Will told me today that Uncle Jack went 90 miles an hour in that yellow car and that they almost hit a wild turkey. I highly doubt it was that fast, but in a 7 year old's mind it's something he will never forget. I’m so grateful we could all go to Hawaii together to celebrate this awesome guy. I took over 1000 photos again, and surely my computer is going to explode from being over capacity at some point. Here are some of my faves:

During our vacation I also ditched all of Ellie’s supplements, her sure steps (braces for her ankles), her hip helpers (to keep her froggy legs aligned). It was awesome (I said that in a singing opera voice in my head)… I gave her thyroid meds every day but that’s it. And you know what? I felt like she was stronger and progressing better than ever after that. Why does that always happen?? She's now back on everything, we are following PT’s rules as far as wearing all of her therapy gear, and we are back to our routine but damn it felt good to be a rebel! And she loved it too.

Halloween started off kind of awkward this year. You see, every Halloween since the boys were tiny we would trick or treat in our little town with the cousins, but that isn't possible now that they live in Vietnam. So last year we realized we needed to find a new tradition, and we went with our best friends and had a blast in a new neighborhood trick or treating. Well they moved to Texas in August, so that tradition ended too. Can you sense the self-pity?? Wah waaaah. I feel like everyone we love is moving away from us, and I don't like it! So I called our OTHER best friends and invited ourselves to hang out with them. I have no shame. Luckily they said it was fine! It was a lot of fun, the kids scored tons of candy, and it was fun to catch up. Jen, you guys better not move away too!

Our boys together

Ellie was Minnie Mouse, Will was a dead skater boy, and Luke was a zombie. I found out how to do the make-up from watching youtube and hounding my friend on facebook who is a zombie face make-up master (thank you Michelle!!!!) It was easy and the boys LOVED it. 

Here’s a quick how-to: You will need liquid latex, which you can buy from the Halloween store or in my case Amazon because I have a sick addiction to buying stuff on there (free shipping in 2 days? Count me in!)… anyhoo, paint on a thin layer of latex, put a piece of tissue paper over it, paint another layer of latex over that and let it dry. Use tweezers and pull the paper and rip it. Then you just paint over it with cheap face paint you can get at the Halloween section of any store. Wah-lah! You have scabby peeling sores on your face! The boys said it was their most favorite costumes ever. And I had fun doing it!

OH, and THIS! This happened:

Brag alert! This is a drawing by my niece Karley, she is 15. I can't tell you how many times Jesse and I, as well as the boys, have studied this dude's face. She drew this with pencil on a piece of copy paper. I still can't believe it, I can't tell you how absolutely proud I am of her. She amazes the hell out of me. She is the most talented artist I know and I can't wait to see what her future holds.

OK, Ellie’s health stuff.  She is now on thyroid medicine. She had 3 teeth come through after being on the meds for 7 days, 2 top molars and one of her front teeth- NO JOKE. Her hair is shinier and growing faster somehow, her tone is better. She now pulls up to stand and goes from the couch to the table with no fear. It took her forever to get to this point but once starting the meds I kid you not, she is a confident little stander-upper now! Everyone noticed the huge change in her, my mama-in-law, my mom, our babysitter, everyone! Walking is still a ways away, but I feel like we are heading in the right direction. I am now giving her the meds two times a day based on her latest blood work. I truly believe this is what she needs and it feels right. Although the Pharmacist at Walgreens made a snide comment "WOW, you have your child on thyroid medicine ALREADY? Isn't she a little young for that?" She's lucky there was a window in between us because I wanted to throat punch her. OK not really. Ok well maybe just a little bit. :)

I have been waiting months for Ellie to say “mama”. One of her first words was "dada" and in the past year I've been trying to get her to say mama, but she will look at me with a twinkle in her eye and say "dada". Then it finally happened, but it wasn't the way I expected. See the below video. And note this was a month ago and she still says it this way. Yep that’s my girl... she's such a stinker. 
Ellie Finally Says Mama

Her other awesome new trick is her whistling. People freak out over it. Her OT said “in all my years working with kids I’ve never had a child able to whistle at 20 months old!” I think it must be genetic. My dad was the best whistler ever, and I whistle every day. And hey it’s good oral motor therapy if you ask me!
See clip:
Ellie Whistling

I also want to bring up our DSDN Holiday Card Campaign. We are making a shout out to families who have children with Down syndrome to send a holiday card to their medical providers (NICU Team, Pediatrician, OB's Office, etc). Please share your beautiful families far and wide as a reminder how loved our little ones are. 

Here are a few more photos from the past couple of months.

Ellie's left eye is turning green and you can really see the difference in this pic. 

Yes, yes you are my girl.

One of my all time favorite pictures of her!

I made this shirt for sis, I think it's so cute on her. We also sent one to Ellie's boyfriend Mason, how adorable is he??

Every once in a while I will have a shirt idea and have found Spreadshirt to be really great in regards to quality, ease of designing, and quick shipping too. This is also where I made the boy's shirts for our first World Down Syndrome Day. Luke wears Will's old one now and it's getting too small. I think I'll reorder some bigger sizes soon because they love to wear their "sissy shirts".

Here's my little shop with the different shirts I've come up with: Spreadshirt Shop I highly recommend them if you have an idea for a shirt!!

I love this photo, look at how small my babies are! Oh my heart!

Well that wraps it up for now. We are looking forward to hosting Thanksgiving at our house again, and then Christmas is right around the corner and Ellie's birthday too. Can someone slow down the clock a little please? I can't believe it's the middle of November already. Sheesh!

I always end each post with a song that is special to me. As I've said before, I always have a constant soundtrack playing in my head. For this post I asked Uncle Jack to choose the song. He is a music buff and has impeccable taste, so I knew he would come up with something perfect. Thank you Uncle Jack, I think this is a wonderful choice. I especially like this part:

So if you're walking down the street sometime
And spot some hollow ancient eyes
Please don't just pass 'em by and stare
As if you didn't care, say, "Hello in there, hello"

Hello In There - John Prine