Sunday, December 31, 2017

Check Out Our Top 5 Blog Posts of 2017!

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top down syndrome blog posts 2017

It’s hard to believe we’re just a few hours away from the end of 2017. For our family, this year was definitely a mix of hard times and good times…with the birth of our 3rd son being one of the highlights of the year. I’ve also been blogging much more frequently this year, which I really enjoy.

With that being said I wanted to share the top five posts that I published on this blog in 2017. If you missed any of them, be sure to check them out.

Our Top Blog Posts of 2017

1. People With Down Syndrome Don’t Have “Special Needs” – In this post I shared a video that Lauren Potter, who played Becky on the television show, “Glee”, appeared in. This was a humous video that explained why people who have Down syndrome don’t have “special needs.” If you haven’t seen it yet, be sure to check it out!

2. A Letter to Noah’s First Grade Teacher On His First Day of School – Noah started the 1st grade this year! In this blog post I shared a letter that my wife wrote to his teacher on the first day of school. The goal of the letter was to help the teacher get to know Noah, as well as share a few of the unique challenges that Noah faces as a child with Down syndrome. Feel free to use this letter as a template for your own child if you’d like.

3. 10 Things to Never to Say to a Parent of a Child with Down Syndrome – If you’re a parent of a child with Down syndrome you may have heard phrases such as; “I’m so sorry.”, “Is he ok?”, and many others. In this blog post I share the top 10 things to never say to a parent of a child with Down syndrome. Feel free to pass it along to a friend if you need to. 🙂

4. Ice, Ice, (We’re Having a) Baby!– In this blog post we shared with everyone that we were having a third child. We also shared a super fun video of us creatively sharing the news with my wife’s mom! Her reaction was priceless.

5. How a Chick-Fil-A Employee Changed My Idea of “Meaningful” Work – In this blog post I shared a story of a girl with Down syndrome I saw working at Chick-Fil-A that changed my idea of what “meaningful” work means.

Thank You

To everyone that follows our story on this blog, our Facebook page, Instagram feed, etc. I want to say thank you. We’ve been sharing our story for close to seven years now! We’ve met some great people, and are very encouraged by your comments, emails, messages, etc. I hope we encourage you as we share our story, as much as you guys encourage me!

I’m looking forward to 2018. We have an exciting announcement to make when the time is right! So stay tuned! If you haven’t signed up to receive our posts by email, please make sure to do so, so we can stay connected. Simply enter in your email address in the box below. On top of the exciting announcement planned for next year, I’m looking forward to continuing to share our story on this blog, and social media channels. I’m also looking forward to sharing more stories of what life is like raising a child with Down syndrome in different parts of the world via the next blog series we started this year!

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To all of our readers, here’s to an awesome 2018! Let’s change the world together!

– Rick

(Noah’s Dad)

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Acknowledgments

Even though it's usually at the end, the acknowledgments are often the most important part of a book.

This year, thousands of people have helped. They've inspired those they engaged with, built things that mattered, gracefully handled pain and loss, connected with ideas... and they've also spirited me through airports, welcomed me into their lives, shared honest feedback, made a commotion, set an example and showed up precisely when needed. They've written and been read, spoken up when it mattered and extended themselves. They've done their work in public or in private, from nearby or afar, but they've seen and been seen.

The thought of listing them (and alas, leaving out so many) is both exciting and enervating, but here's a very partial list, perhaps 5% of those that I owe so much to. Perhaps you can make a list as well.

Liz Jackson, Bernadette Jiwa, Amy Koppelman, Debbie Millman, Ishita Gupta, Frank Oswald, Sunny Bates, Fiona McKean, Andrea Stewart CousinsJacqueline Novogratz, David Wahl, Fred Wilson, Joel Lueb, By The Way Bakery, David Curhan, Cat Hoke, Nancy Lublin, Roger Gordon, Aria Finger, David Wilf, Marjorie Bryen, Kevin Kelly, Niki Papadopolous, Chunyan Teng, Paul McGowan, Mark Frauenfelder, Shawn Coyne, Ramon Ray, Emily Epstein, Harley Finkelstein, Phil Hollows, Tina Eisenberg, Sarah Jones, Simon Sinek, Bryan Elliott, Tom Kubik, Travis Wilson, Jesse Dylan, Rodger Beyer, The extraordinary team I work with every day at HQ, Micah Sifry, Steve Dennis, Sheryl Sandberg, Marco Arment, Adam Grant, Sam Saffron, Susan Piver, Michelle Welsch, Tim Ferriss, Brian Koppelman, Alex DiPalma, Willie Jackson, Shawn and Lawren Askinosie, Nicole Walters, Robin Estevez, Chris Meyer, Francoise Hontoy, Louise Karch, Acar AltinselShannon Weber, Michele Kyd Lee, Lodro Rinzler, Sarah Peck, Susan Schuman, Lisa Oswald, Danny Meyer and, of course, you.

Especially you.

Can't do it without you and the ruckus you seek to make every day. Thank you.

       


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Saturday, December 30, 2017

You’ve Got a Friend in Me

Thanks for checking out today's post. After reading I'd love to hear your thoughts on the comments by clicking here ---> You’ve Got a Friend in Me

child with down syndrome first grade friendship

Noah’s Buddy, Stella

As a parent when your child walks in the doors of a school building on their first day, one of your desires for them is to be accepted and loved by their peers. You hope your little boy or girl will make friends and have a good experience. This is especially true for parents of children with Down syndrome.

Noah looks different than other children. He can’t communicate as well. He isn’t potty trained. He isn’t as fast or as strong, etc, etc..So you can imagine last year when Noah started Kindergarten (at a public school, surrounded by typical kids) some of the worries / fears / emotions going through our mind.

We have seen God do some amazing things in the life of “little” Noah. One of them is the way He has provided so many wonderful friends for our son. If you’re a parent of a child with special needs whose child hasn’t started school yet, you may have some of the same fears we had. If that’s the case I want to encourage you; the kids at Noah’s school have been so kind, loving and accepting to Noah.

A New Friendship

Last year when Noah started Kindergarten a little girl named Stella befriended him. Noah would come home and we would hear him say the name “Stella: frequently. She had declared him her best friend who is a boy and became his helper in the class. The best part about this is that it was before my wife had gone into class to talk to them about Noah and the differences they may see. (Which I need to blog about some day!)

Stella and many others had already fully embraced Noah as a friend and part of their class. Their friendship is really sweet. This year, as he started first grade not only where they in the same class, but they started the school year off sitting side by side!

meet the teacher public school child with special needs

It’s been really sweet watching the two of them become friends. Recently I dropped Noah off at school and she grabbed Noah’s hand and walked into school with him. #Awesome

girl walking into school with a child with Down syndrome

Walking into school!

A Trip to Six Flags

We’ve gotten the chance to get know Stella’s parents as well and yesterday Noah and I got to go to Six Flags (one of Noah’s favorite places) with Stella and her dad. We had a blast!

friends at six flags

Hanging out at Six Flags

children at the frosty snow hill at six flags

Just finished going down the Snow Hill!

child with special needs at holiday in the park six flags

Holiday in the Park

Noah is a bit shorter than the typical first grader, so Stella pushed the gas for Noah as Noah drove! 🙂

down syndrome boy and girl at six flags

Riding the antique carsboy and girl riding antique cars at six flags

boy with special needs at six flags over Texas

Riding the tea cups!

child with down syndrome riding tea cups at six flags

child with special needs riding mine train at six flags

Getting ready to ride the Mine Train!

child with down syndrome riding merry go round at six flags

The Merry Go Round with Stella and her dad

The last ride they kids rode were these big swings. I buckled Noah in and he rode all by himself! I was a little nervous, but he met the height requirements, was buckled in, and the high school / college aged kid that was checking everything didn’t seem to have a problem with it, so… ¯\_(ツ)_/¯

child with down syndrome riding the swings at six flags over texas

The Swings

Thankfully he didn’t slip out of the restraints (with that low tone of his) and he had a great time! We all did. It was a great day.

We’re really thankful that Noah has a friend like Stella, and for all all of the friends that Noah has. Again, if you’re a new parent of a child with Down syndrome, I really do hope posts like these encourage you. Kids are kind. Don’t be worried about how kids will treat your child “one day.” Will some kids be mean, sure. That’s life. But I’ll tell you from my experience, kids (and parents) have been really great to Noah. Just look at this post from Noah’s 7th birthday party.

Our Experience with the Public School System

child with down syndrome first day of first grade

First Day of First Grade

If you have a child with special needs that hasn’t started school yet you may also wonder if you should home school your child, put them in a school that is almost exclusively for children with Down syndrome, or the public school system. I can’t speak for the first two, but I can say we have had an overall great experience with having Noah in the public school system. I think it’s great for the other kids to meet someone like Noah, and I think it’s great for Noah to be around other children who are more “advanced.” He learns behaviors from them, and hearing other children talking so well all day, is also helpful for him in regards to his speech development. Personally, we’re glad he’s in the public school system, and could never imagine doing anything otherwise.

Like I said, the children have been very kind to him. As adults, we could all learn a lot from children.

To Stella: There’s no way you can know now, a first grader, the blessing that you are to Noah and to us (his parents.) I hope one day you come across this post as an adult and are encouraged by how God has and is using you in Noah’s (and our) life when you were just a “little” girl. Thanks for loving our son so well.

Do you have a school aged child with Down syndrome? If so, do they go to public school? How has that expereince been? Leave a comment let us know!

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Granularity

You can't make an hourglass with a boulder.

But break the boulder into sufficiently small bits of sand, and you can tell time.

You wouldn't want to eat a baked loaf of ice cream, mustard, fish, bread, capers and cheese.

But separate them into their component parts and you can open a restaurant.

It's tempting indeed to build the one, the one perfect thing, here it is, it's for everyone.

But one size rarely fits all.

The alternative is break it into components, to find the grid and to fill it in. Not too small, not too big. Grains that match what we're ready to engage with.

       


from Seth Godin's Blog on marketing, tribes and respect http://ift.tt/2DAKliG

Friday, December 29, 2017

Noah “Hikes” The Maroon Bells in Aspen, Colorado

Thanks for checking out today's post. After reading I'd love to hear your thoughts on the comments by clicking here ---> Noah “Hikes” The Maroon Bells in Aspen, Colorado

child with down syndrome portrait maroon bells

Hanging out at Maroon Bells!

This summer we took a trip to visit the boys grandparents in Colorado. I have to say, I hit the in-law jackpot when I married my wife. Not only are my in-laws super great, but they live in one of the most beautiful parts of Colorado (just a short drive from Aspen!) The view from their back porch looks like something you might see on the front of a postcard.

It’s breathtaking.

Maroon Bells

The Maroon Bells is located in Aspen, Colorado, is part of the Rocky Mountains, and as I mentioned above, is a short drive from my in-laws house. I’ve been visiting my wife’s family for almost 17 years now and this was the first time I’ve visited the Marron Bells. I don’t know why I haven’t made the trip out here before…that’s seriously my bad.

It was fun watching the boys see such a beautiful site and watch them just play around. I love making memories like this.

grandchildren with their grandpa at maroon bells aspen colorado

The boys and their grandpa!

We went twice; once with the boys and their grandpa, and another time as a family. The title of my post is a bit misleading. Ok, it’s actually not true at all. Not didn’t “hike” up the mountain. We drove our car up the mountain, parked, got out, walked a few feet and ended up at these amazing views. But..he was on a mountain, so… we he basically hiked it! 🙂 (Noah’s also been up a few other mountains in his young life; he took a ski lesson once, and my wife hiked up 7 Falls with him to name a few.)

mom with two children at marron bells aspen colorado

Abbie and our three boys! (She was pregnant with Koen here.)

husband and wife in front of maroon bells aspen colorado

I love her

I’ve said this before, but my wife is seriously a superhero. If you don’t believe me, check out this picture of my pregnant wife chasing our son (who is a runner) in the mountains of Colorado. #SheNeedsACape (And before you leave a comment, yes…I was taking a picture while my pregnant wife chased one of our sons. #HusbandFail)

mom chasing running after child with down syndrome outside

He’s a runner!

family picture at marron bells with goldendoodle

I love this family!

dad with sons at maroon bells aspen colorado

My boys!

maroon bells colorado child with down syndrome-first-hike7

Brothers

maroon bells colorado child with down syndrome first hike

I love the love these two have for one another

Maroon Bells really is an amazing place. If you ever have a chance to go, I’d encourage you to do so! The pictures don’t do it justice.

maroon bells Aspen colorado child with down syndrome first hike

Maroon Bells

If your a new parent of a child with Down syndrome you may wonder if your child will ever do “typical” things. I hope this blog encourages you when you see Noah and his brothers doing normal things that kids do like “hike” up a mountain, play together, and just be boys. I mean it when I say it: our life isn’t sad. I love being Noah’s dad. Having a child with Down syndrome isn’t a sad story. Don’t let yourself, or society, convince you otherwise.

Have you ever been to Maroon Bells, or another mountain with your kids? How did they like it? Leave a comment and let me know.

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