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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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Uncomfortable

This morning I took Jana to our local library story time.  There were about 1-13 other little ones ranging from 1-5 years old.  It was her first time attending so it was a lot of new things to experience and see.  Also, she was the only child with special needs there. IMG_9089

We arrived early and she got to “read” a few books and play with blocks while we waited.  The other kids seemed to know each other already so they all played together.  She sat near them and watched mostly.  When the teacher started the class they opened up with two songs and unfortunately for Jana, everyone clapped afterward.  (Remember, clapping throws her right into a meltdown!)  I was able to take her to the back of the room and calm her down.  We returned and listened to the teacher read Dr. Seuss.  After the story the teacher had the kids play with a parachute.  You remember this in school right, each kid holds part of the brightly colored parachute and the shake and lift it.  Jana LOVED it!  She giggled and got excited each time they raised it high over her head.  Then it was craft time, they made party hats in honor of Dr. Seuss…Jana didn’t really care about this.  But enjoyed sitting with her “cousin” (our good friends daughter) and watching the other kids.  Her favorite part of the event though was playing with a box of bright colored scarfs.  Something she’s done in IMG_9095therapy multiple times.  This is a great sensory game and honestly, just loads of fun 🙂  All in all I think Jana had fun. IMG_9107

So why did I title this Uncomfortable?  Well, as I was sitting there with all these families around, I noticed something, non of the other mamas asked me about Jana.  I never even got a “She’s so cute!” (Which btw I get constantly) I never got asked how she was.  It seemed like we never really even got acknowledged.  Now don’t get me wrong, I wasn’t a total loner here.  There were two families I knew and they were happy to see Jana there and the teacher asked me a ton of questions about her therapies.  But I just couldn’t shake the odd feeling I kept having.

At lunch I discussed this with my hubby.  I thought maybe I was looking into things too much or I was just uncomfortable.  His answer was “Most likely Peanut made them uncomfortable.  They didn’t know how to respond to her”  He reminded me, usually when we go to events like this, it is with her Infant & Toddler therapy program.  There are other kids with special needs around.  The parents are accepting of all kids who are “different.”  It’s usually a safe place.  Other than church, she doesn’t really have play time with “typical kids.”  Is this what we have to get used to?  Will my daughter just have to accept that at times she might not even get acknowledged because something she was born with makes others uncomfortable?  I think that’s kinda crappy!  She shouldn’t have miss out on things because others don’t know how to handle it.

I mean really!  Its 2017!!  We live in an age of IMG_9103information!  People all over the world are fighting for acceptance.  But yet, someone who is “different” than the norm makes people uncomfortable?!  Guess what people, if my daughter plays with your child, I promise, they will NOT catch Down Syndrome.  They will however, catch a friendship with a beautiful, intelligent, loving little girl.  They will learn that outer appearances are not what makes someone special, but what’s inside that does!  They will learn that God has a special plan for kids like Jana and they are lucky to be able to cross paths with kiddos just like her.  Parents please, I am asking you, don’t raise your children to be scared of kids who are different.  Teach them that differences make our world brighter and better.  You won’t regret opening their world…I promise.