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Guest Mama – Looking Back

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I’d like to introduce you to Karen today.  Karen is a beautiful mama to a very handsome boy named Caleb.  I’ve been able to follow Caleb’s journey as he competes in the Special Olympics, travels to be part of DSA Programs, and overall as he just lives his life as a pre-teen boy 🙂  I love that I’ve been able to connect with Karen because she has been able to advise me when it comes to these rough toddler years Jana is going through.  Part of our DS community is learning from others and passing that knowledge down.  So I’m happy to give you the chance to meet Caleb 🙂

Looking back, and looking ahead….

caleb6Raising Caleb has been quite a journey so far. We were/are “older” parents to begin with, so…that. And he’s got a ton of energy, so….that! We didn’t exactly plan to have Caleb, 17 years after his sister, but I honestly believe he was sent to us for a reason. Those first days and weeks were filled with lots of emotion – joy, sadness, confusion, anger, concern, but most of all, love. We loved him from the first, but realized that raising him would be more difficult than raising a typical child. I say that not because we loved him any less. But because we know the world still has a long way to go to be an inclusive environment for our kids with disabilities –whatever they might be.

Those first days of his life would also be filled with doctor’s appointments, and therapy visits. We settled into our routine, and wondered if this would be our new normal forever (It isn’t). Later on, Caleb headed off to preschool, and mom-playgroups turned caleb4into playdates with friends. He happened to be one of two children with Down syndrome at our church preschool. Both of them were included in everything. We worked hard on developing communication skills to make that easier. Big-kid school came, and therapies were done in during the day, which made it a bit easier for mom.

Fast-forward to today. Some days, I have a hard time believing our little guy is already ten. 10 is a funny age. Halfway between toddlerhood and adulthood. Caleb’s on the cusp of puberty, and I have my fingers crossed that going through that with a boy will be a little easier than it was the first time J Jana asked me to share what our typical day looks like. It brought me back to a time when Caleb was little; being fascinated with the one lone mom who stayed in our BabyCenter Down Syndrome group. Her son was older, maybe even ten years old. What was their life like? Was it really #morealikethandifferent ?

caleb1For us, the answer is yes, and no. We still struggle with communication most days, and fine-motor skills. (Fingers crossed to work on shoe-tying and other independent skills over the summer). We work more on planning for his financial future than we did our daughter, making sure he had a Special Needs Trust, and now, an ABLE account. We have a binder with his medical life – specialists and insurance information – for easy access. We think about his future, and what that might look like – employment, government assistance, living situation, love life! We help him to understand the importance of good social skills as he gets older. We pray that he doesn’t have many encounters with bullies or overhear disparaging remarks.

caleb8However! Caleb leads a full and active life, filled with friends, sports, school, and community events (see my IG to see all he does!). We are thankful that even though he has a few health concerns (open VSD and hypothyroidism), overall, he’s a healthy kid who loves to do things and meet people. He loves to travel, and we’ve been some pretty cool places. He loves his family, most especially his niece Evelyn. He loves to help around the house, but could care less about showering (!). He likes movies and TV shows and books; trains and cars and nerf guns. We like to do things as a family, no matter how seemingly mundane. He loves his daddy – loves to do things with him.

If I had to pick just one word to caleb3describe Caleb, I think I would choose “Excited!” because he is! He’s shown us how to live life to the fullest, and what it means to enjoy every moment we can. He shows us what unconditional love looks like, and what true friendship is. 10 years into our journey…we’ve learned a lot. But there is still so much to learn from this little guy. So, my advice to you, looking back, is to learn all you can from your child with Down syndrome. Give them the tools they need to fly. Because the world IS changing. There are so many opportunities for our kids today. The world still has a long way to go to be totally inclusive, but I think we are heading in the right direction. Be ready for poss-ABILITIES!caleb2

Peace,

Karen

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Guest Writer – Meet Sarah

image1I am so excited to introduce you to this beautiful young lady!  As a 16 year old, Sarah is an aspiring actress and model.  Like most teens her age, she loves dancing, cheer, being in front of the camera and spending time with her amazing family.  Oh yea!  One more interesting bit about Sarah, she also has Down Syndrome!  I am so proud that Jana has girls like Sarah to look up to.  Sarah is living proof that DS dose not limit someone!!

My name is Sarah. I am 16 years old. I am like you only a little different because I was born with Trisomy 21 (Down syndrome). I love being me! I love who I am! I am just about to finish my first year of high school. Mom and dad worked really hard to get special education to come to the general education classroom because I learn best with general ed. peers. Inclusion isn’t for everyone but I have big dreams! I plan on going to college after high school. I plan to have a job, my own apartment and to get married! It’s hard to get other people to not limit me. School likes to think there are things I can’t do. But, I can do all image2things. It just sometimes takes me a little longer. I’m a very hard worker and mom and dad push me to do my best. They give me lots of opportunities and adventure to help me to achieve my goals and love life!
I was born into my family after my oldest sister died at the age of nine. Mom and dad had three children and when my sister died they were lost and grieving. There will always be a little hole in our family for my sister but I’m the one who brought about hope and healing. I complete my family and know my big sis watches over me everyday!
Mom says a little prayer every time she sends me into high school. It’s a part of her letting go of me and trusting I will be ok.image3
My dream is to be able to walk lots of runways and model. It’s fun to wear cute clothes and makeup! I also love to dance and listen to music. I would love to be an actress on tv. I want to be rich and famous! Next year in high school I will take theater and mom takes me on auditions when the opportunity comes along. Wish there were more opportunities. I haven’t had a paying job yet but I will image4because I believe in me. My family believes in me and the sky is the limit for what my life holds. There are no limitations for people who have Down syndrome. Absolutely none❤️

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Just Jessica

Day 14 of 21 day challenge… (I almost missed it!)

This article was released today on Yahoo…a dad has been illustrating his daughter Jessica who has Down Syndrome.  These cartoons show her as a “normal” teen just like everyone else.  I think its awesome that this dad found a special way to pay tribute to his daughter and bring awareness to the community!Dad-Just-Jessica-Cartoons-Daughter-Down-Syndrome

Read the full article and check out his wonderful cartoons here:
Dad’s Just Jessica Cartoon