Monthly Archives: October 2016

Meet Benny

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I want you all to meet three-year-old Benjamin! I first met Benny and his mama, Jamie, a couple years ago on Instagram when I heard about an amazing project Jamie was starting. Jamie had written the story of her early days with her son in a beautiful journal and was mailing the book to other families all over the globe. The Down Syndrome Diary is now filled with stories of families learning of their child’s diagnosis and the hope they have found since receiving that news. I wrote our story in its pages a year ago and am super excited to eventually see the finished project! The project is now gaining momentum and getting international press! Click over to TheDownSyndromeDiary.com to see where the journal is traveling and for updates. You can follow Jamie and Benny on Instagram as @BenThroughItAll and on Jamie’s blog.

 

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What are some things Benny thoroughly enjoys doing?
Benny LOVES music! He is downright passionate about it. He will completely stop what he is doing and bee line towards music if it starts playing at any time within earshot. If someone pulls out a guitar and starts singing, he is in heaven!

What are his favorite games and books?
Benny LOVES to do board puzzles these days. He is obsessed! Books are big on his list of fun things, too. He loves Curious George, Mama Llama, and his favorite books ever are the That’s not my Puppy series!

What would he do if they could design his own day?
Benny’s self-designed day would consist of lots of snacks and delicious food, a park with swings and slides to climb on, his whole family there to play with, and a personal band playing music just for him!

What are a few things he’s really good at?
Benny is a great sleeper and eater…just like his Mama!!! He is also great at making people smile! He’s a super friendly little dude. Oh… and he’s REALLY good at getting his picture taken. He will smile the SECOND anyone takes out their phone or camera!

Who does Benny love to spend time with? What do they do together?
Benny’s favorite people to spend time with are his Abuelito (Grandpa) and his sister Ellie. He and Abuelito love to play with different things they find around the house. With Ellie, they like to listen to music and tickle each other.

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How is Benny  similar and different from his little sister?
Ellie is 8 months old, and is definitely starting to rival Ben in the speech category. Benny is a quiet little guy, and still isn’t speaking any words or sounds consistently. Ellie is already saying Mama, Dada, and Bruh-Bruh (brother) while she reaches out for big bros hugs! I see her learning from him by watching him play with his toys, and he is enamored with the sounds she makes.

What is something you want everyone to know about your son?
Benny is an extremely intelligent, easy going, and capable little dude. He may have his own time frame for things, but he ALWAYS gets there!

What is the most wonderful part of knowing them?
The most wonderful part about knowing Benny is having the opportunity to make him laugh. When Benny laughs, his whole body shakes and his shoulders jump up and down. His little laugh is gonna change the world!!!

What have been good resources for you to learn more about Down syndrome?
My favorite place to learn has been through other parents. I love hearing and learning about Down syndrome from those who know how amazing it truly is to have that extra chromosome in their lives. Life is all about perspective, after all!

What is something you don’t think many people know about Down syndrome?
I don’t think many people know that people with Down syndrome are often of average or slightly less than average intelligence. They can do just about anything anybody with only 46 chromosomes can do!!!

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Check back tomorrow as we continue celebrating Down Syndrome Awareness Month or click below to read all of our previous posts.

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Meet Way

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I’ve been looking forward to having Way on the blog all month, and today is the day! Four-year-old Way is similar to my Sammy in many ways, making the chats I get to have with his mama, Lindley,  so encouraging and real. You can find Lindley and her family on Instagram as @OurMorningGlories and on her blog Our Morning Glories.

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What would Way do if he could design his own day?
If Way could design his own day, it would definitely include a trip to the park to play on the playground and swings. Probably followed up with a trip out to the store (he loves running errands with me because he is a social butterfly)! Then, I think he’d choose going to hippotherapy, where he gets to ride his fave horse, Gwinnie, or to music class (he loves music)! Or maybe the library or storytime, because he can’t pass up a good book! We’d have to include time to play with his brothers, too. And to top off his day, he’d vote for a bubble bath for sure!!

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 Who does he love to spend time with?
He absolutely adores his 3 big brothers and the feeling is mutual!

What does he do with his brothers?
They love to play together, which often involves big brothers making up crazy songs and encouraging Way to repeat them! Big bros love to read to Way and help teach him how to do basic tasks! They have a contest every morning to see who can go into Way’s room the fastest—it’s playtime before they head off to school!

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What is something you want everyone to know about them?
I want everyone to know that Way and others born with Down syndrome are fearfully and wonderfully made! God makes no mistakes and that includes ALL of us! Way brings joy to everyone who interacts with him and loves so fiercely it’s unbelievable!

What have been good resources for you to learn more about Down syndrome?
For me, the technical books haven’t had as much of an influence as I thought they would. I expected things to be so different when we found out about his diagnosis while I was pregnant with him. However, Way truly is more alike than different!! So the best resources for me are often the ones I find in relationships. Meeting people in town who have loved ones with DS and the Insta community as well have both been very helpful!

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Check back tomorrow as we continue celebrating Down Syndrome Awareness Month or click below to read all of our previous posts.

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Meet Abby & Bailey

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Today is a big day for one of these two sisters – Miss Bailey is six! Happy birthday, silly girl! You guys, I’m so excited to have these girls on today. I have followed their family on Instagram for years and am constantly inspired by them. When Bailey was just little, Miss Abby became her forever sister through adoption. (She’s now six, as well.)  A big thank you to their mama, Christy, for loving your kids so well and being such an inspiration for so many! You can follow Christy and her family on Instagram at @cjpics.

 

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Miss Abby

What are some things Abby and Bailey enjoy doing?

Abby loves all things musical. She sings at the top of her lungs (and carries a tune better than anyone in our family!), plays her toy guitar, recorder, etc. Girlfriend can make some noise, ha! She also loves to learn and gets excited when its time to do her Kindergarten homework.

Bailey is really into playing with Play Doh and playing with her Peppa Pig characters. She is very social and is a big ham – the more people she can make laugh, the better.

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Miss Bailey

What are their favorite or least favorite foods?
Abby – anything with sugar – cookies/candy/cake. Abby is a very slow eater until she has a sugar treat in front of her and then she can eat faster than anyone around.
Bailey – anything with salt – mostly macaroni & cheese, pizza, etc.   Bailey is what we call an “enthusiastic eater” – she loves to eat and will often stop eating to tell us “Good cook, mommy!”, or “mmmmm, delicious!”

What are a few things the girls are really good at?
Abby has great memorization skills. If its something that can be memorized, she can do it. She’s in kinder and knows all of her letters, the sounds they make, can count to 100, knows all of her numbers, can write words, is learning to read site words, etc. She can also sing songs super well – we always recognize the tune of whatever she is singing.

Bailey is great at making people laugh. She loves to build and use her hands – she makes incredibly cool structures with magnet tiles, blocks, etc. She’s really good at taking knowledge she has and applying it to new situations.

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What have the girls taught their big brother? What has he taught them?
They have taught our son that there is nothing wrong with having Down syndrome. A few days ago a friend of his was asking (not in a mean way) how it could be that both girls were born with the same “problem” of Down syndrome. Taylor’s response was that it is not a problem to have Ds, its just a part of who they are. We told the little boy that it was just like that he and his sister were both born with blonde hair, it isn’t a problem, its just a part of how they are.   I love that the girls have taught Taylor that differences are okay, and everyone has a gift to share with others.

Taylor teaches the girls things every day. He has a sweet voice he uses only for them, and if he can tell there is something one or both of them don’t understand, he will use his sweet voice to explain it to them in terms they understand.   They love and admire their big brother!

What is the most wonderful part of knowing Abby & Bailey?
The joy they bring to us and others. There is not a day that goes by that we do not smile and giggle at something they said or did.   We have also met some of our best friends through these girls!

 

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Check back tomorrow as we continue celebrating Down Syndrome Awareness Month or click below to read all of our previous posts.

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Meet Jonah

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Here to celebrate day 26 of Down Syndrome Awareness Month is the energetic, athletic, seventeen-year-old Jonah! I’ve known Jonah’s family for years. His sister, Anna, is a dear friend of mine, and his mom, Laura, was an inspiration to me even before I joined her on this journey of parenting a child with Down syndrome. It’s been really fun for me to catch glimpses of Jonah as an uncle the last few years and to dream about seeing Sam in that same spot down the road. Laura shares a few things about her son today as we near the end of  this month of celebrating. You can find Laura on Instagram as @throughlauraslens. Thank you, Laura & Jonah!

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What are some things Jonah likes to do?
Jonah is very social. As a Junior in high school, he is taking in everything he possibly can. Currently he is the football manager and will be the basketball manager this winter. He is FULL of school spirit  and can be seen giving the players pep talks on the sidelines, has been known to write out plays and give them to the coaches after a rough game, and will run in front of the student section to get them on their feet cheering for the team! He is worth the admission fee to watch him in action!!

What is something he’s really good at?
Jonah has achieved his black belt in karate!

What is the most wonderful part of knowing him?
Jonah is his own unique self. He believes he can do anything! He teachers me every day to not be afraid to try!! I can’t imagine life without him.

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Check back tomorrow as we continue celebrating Down Syndrome Awareness Month or click below to read all of our previous posts.

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Meet Gracie

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Gracie!! Do you remember this sweet face from her post a year ago? Oh, she just melts me! Miss Gracie is two-and-a-half now and you can see her on her mama’s Instagram feed @jme027 and on their blog NormalAsWeKnowIt.com. Thank you for celebrating with us today, Gracie and Jamie!

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What are Gracie’s favorite or least favorite foods?
Gracie loves all food. She has quite a personality and it comes out in full force when she is eating yummy food. I joked on her first day of school chalkboard that she wanted to be a food critic when she grows up! She loves any sweets, but every day she usually eats avocados, green smoothies, hummus and crackers, and PBJs! She eats better than my 5-year-old.

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What has Gracie taught her brother? What has he taught her?
One of the things I most passionate about is God’s calling on my life to spread the word that Gracie is #morealikethandifferent . She loves her precious brother, Gage, and he adores her. Whenever we talk to Gage about Gracie and how she has Down syndrome, we always tell him that she is just like him, but may need a little extra help and a little extra cheering. He has taken that advice and blown us away by how loving and compassionate he is with her. He has extended that same compassion to others with special needs and it is clear to me what a blessing Gracie is to him as he grows. He can’t help but be better because of her, and so are we. He is her greatest teacher, too. If he sees me working with her on something, he wants to do it.

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What is something you want everyone to know about your daughter?

Gracie is not a burden to us. She is a blessing to us in every way. Gage will be a more compassionate, loving, encouraging person because he has had the opportunity to grow up with Gracie. And Gracie? She will forever have a big brother that will change the world for her. He knows God created Gracie perfectly and he wants to spread the word that Down syndrome is awesome.

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Check back tomorrow as we continue celebrating Down Syndrome Awareness Month or click below to read all of our previous posts.

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Meet Conor

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Hello, Conor! This handsome three-year-old is here to celebrate day 24 of Down Syndrome Awareness Month! His mama, Danielle, has lots to tell us about her son, but I first have to tell you about the beautiful organization these two have created. Baskets of Love delivers baskets to new parents of littles born with Down syndrome in the Vancouver, Canada area. I so highly recommend clicking over to basketsofloveds.com to read more. You can find Conor and Danielle on Instagram as @basketsofloveds and as Baskets of Love on Facebook .  

 

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What are Conor’s favorite or least favorite foods?
He loves pasta/noodles, Hawaiian pizza, any fruit and vegetables you can dip in dressing and ice-cream! He takes after his momma and is not a fan of peanut butter or any food that can get stuck in the small arch of the roof of his mouth like mashed potato.

Who is his favorite cartoon or movie character?
I’m pretty sure that Rachel from Signing Time is one of his favourite people on the planet.

What would he do if they could design his own day?
Wake up bright and early and go to the park with this three favourite people (mom, dad and grandma). Then go for a long walk to explore everything and everywhere. Eating would be optional.

What are a few things he’s really good at?
He’s very good at picking up on the emotions of others. He doesn’t like to see people hurt and gets upset if you are. Using this super-power, he’s an excellent manipulator and knows how to get what he wants…especially if he flashes that smile of his followed by a hug and kiss.

Who does he love to spend time with? What do they do together?
Apart from mom and dad, his absolute best friend is his grandma. They have spent a lot of time together and he absolutely adores her. She has a hard time saying “no” to him and he loves it. She also loves to watch him explore and embraces his “run with the wind” spirit, which he revels in.

 

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How is he similar or different from their siblings?
He doesn’t have siblings but I see similarities in children his own age in that, at the end of the day, he thinks the world revolves around him and is appalled when you remind him it isn’t. His schoolmates are becoming so aware of differences and the uniqueness of everyone. They are teaching him to come out of his shell a little more and participate instead of parallel play.

What is something you want everyone to know about Conor?
Everyone tells me how cute he is and what he beautiful smile he has. While that is undeniable, I want people to know that there is so much more to him than being the cute little boy with Down syndrome. I want them to know that he is fully capable of reaching his goals with a little support. And I want them to know that he’s a runner, so I apologize for not being able to sit and drink coffee with you at the park. I’ve got to go run after my kid who’s about the hit the street.

What is the most wonderful part of knowing your son?
The people we have met and the friends we have made along this journey. Some really great people we would have never otherwise met in an eye-opening world where you can see beauty in the different.

What have been good resources for you to learn more about Down syndrome?
Our local Down Syndrome Research Foundation has been a great resource (dsrf.org). The new book “A Parent’s Guide to Down Syndrome” has been a good read. What we really need is something similar for Canada.

What is something you don’t think many people know about Down syndrome?
How busy it can be, so I apologize if I haven’t called you right back or responded to your e-mail in a timely fashion. While our life is pretty normal, it’s also pretty full.

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Check back tomorrow as we continue celebrating Down Syndrome Awareness Month or click below to read all of our previous posts.

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