A day in the life of Down Syndrome- Caleb’s day

I remember all too well when I first learned of the diagnosis, Down Syndrome, and wondered about the impact it would have on our lives, my family, our future.  It was all terrifying to me in the beginning.  But, it has been people like Caleb’s mom, Karen, who have allowed me to see glimpses of the future, what our life might be like, by sharing their children with the world.  Recently Karen did an instagram story on a day in the life of her son Caleb, I watched it over and over and then asked if she would do a special one for all of you out there who might also enjoy it.

When Dawn (cedars_story) asked me to share a “day in the life of Caleb”, it brought back some memories of when he was a toddler.  I know most of the followers of Cedars_story are parents of little ones with Down Syndrome.  Back when Caleb was little, I belonged to a group on BabyCenter…parents of kiddos with that extra chromosome.  Most of us parents had babies and toddlers, but there was this one mom.  She had an older son with Down Syndrome named Alex.  I looked forward to the times when she posted, sharing things that Alex was doing.  I was so curious to see what his days were like.  What did he do?  Did he have friends?  What about school, church and family?  It was wonderful to get that glimpse ahead, and I hope to do that today with a Day in Caleb’s life.   It is more typical than not!

Caleb has hypothyroidism, diagnosed at age 2.  We noticed he’d been more tired than normal, and testing proved it. So, he started on Synthroid that week.  We noticed a change almost immediately.  Almost 8 years later, and we still wake up to take that little orange pill (chewable) to start his day.  We also find that he needs some fiber (bananas) to stay regular (!), so breakfast is typically yogurt, bananas and juice.

Time for shower!  We’ve worked hard to get independent showering down, and we’re about 95% there.  Just some help from mom or dad with shampoo amounts and making sure he’s dried off good.

These videos were shot last week – his last day of school for the year!  This year has been full of ups and downs at school.  Some struggles with focus, staying on-task, and reading comprehension, but progress with most everything else.  Just like any kid.  We have a solid team at school to help guide him and his classmates, and we’ll be using a tutor during the summer to stay current on subjects.  Caleb got an award for Busy Bee, and if you know him, it’s SO appropriate lol.  The qualities were:  helpful, busy and hard-working, with an extra bit of “busyness” I think 😉

Back home to help mom around the house for a bit.  He’s a great helper – loves to help with almost anything.  I hope it continues.  Lots of good independent skills to work on to get him ready for the future (and help me out now!)

Time for a break!  He loves to watch movies, and current faves are “Sing” and “Minions”.

Lunchtime is another good time to work on independent skills.  As OCD as I can be, I let him help with pretty much everything at this point, including cutting and pouring.  (always have my towel ready!).  He’s still a bit short, so we use a stool, but he’s getting fairly proficient at making his own lunch.  We still work on opening items like Jell-O cups and string cheese wrappers.

Shoe-tying.  Argh.  This item has been on our list to tackle for about 3 years now.  It will happen this summer!!!

Dance class!  I was not sure this activity would work out, with all the noise, other people practicing, and Caleb’s love of socializing, but surprise!  It’s really going well.  The participants range in age from 10 to 30’s.  All have some intellectual disability in this particular class.  They’ve come a long way in 3 weeks, and are learning twirls and timing.  We’ve got three more weeks to go, and I’m hoping they can all show us their moves at the end of the 6 weeks!

Dinnertime.  Caleb helps set the table and helps Daddy with cooking occasionally.  And helps cleanup, so Mommy can sit on the couch and eat chocolate lol 😉

Bedtime routine includes books and prayers.  Off to sleep and dreaming of the next day’s adventures!

Aside from being the last day of school, this is really a very typical day in our life.  When Caleb was born, we really had no idea what to expect, but we did know that he would be raised with high expectations, just like his sister.  My advice to newer parents is just that.  Start early on skills, and practice, practice, practice.  Set that bar high, provide guidance, support and love, and your child will go far!

Peace,

Karen

Don’t miss Karen’s diagnosis story published a few months ago.