Mom of Fame – Karen: Parenting a Pre-Teen with Down Syndrome

When we decided to dedicate October to moms who have kiddos with Down syndrome we reached out to several moms who we admire and we are absolutely pinching ourselves that Karen responded. She is another amazing mom to follow on instagram (@karenjp0915) if you are a new parent to a child with DS or even a new parent in general. She has a lot of experience being a mom (and a grandma) to her 12-year old son Caleb and his three older siblings. She talks about the importance of parenting each child individually, what is was like to get Caleb’s diagnosis, and how Caleb is “more alike than different”. Please help us welcome Karen into our Mom of Fame!


Tell us a little bit about yourself and your family.

My name is Karen and I’ve been married 30 years (!) to my husband David. Between us, we have 4 children and 3 grandchildren (with one on the way). Caleb, our son with Down syndrome, is the youngest at age 12. His sister Courtney will be 30 later this year. He also has a half-brother (39) and half-sister (41). We cover all ages in our family 🙂

What is the best piece of advice you were given about motherhood? Did you take it? Would you give that piece of advice to someone else?

I’ve been blessed with many wonderful role models in motherhood, including my own mother. So much good advice; it’s hard to narrow it down to one piece. But if I had to, it would be to parent each child individually. That each child has their own strengths, interests, opportunities and challenges. Providing an environment to help them each learn their own path can be tricky, but look for the “helpers” – circles of support. Churches, community groups, schools, etc. can be great lifelines to broadening the path for your child(ren).

How is motherhood different than you imagined it would be?

Wow. It’s harder and it gets harder as they grow up!

It’s such a blessing to be a parent, and it’s also a responsibility. Helping your child find out who they are; what they want to be – it’s work! But wonderful work. I’m very proud of my children and whatever they want to be or do, I try to support them and guide them.

Love them unconditionally. Be there for them.

What are your three strengths when it comes to motherhood?

I’m a “doer” – if there’s something that needs to be done to support my children, I’m there. They know I’m in their corner – loving them unconditionally. I try to be an example for them – for their faith and for giving back. Volunteering was a huge role in my upbringing and I’ve tried to instill that in my kids too.

Describe a time where you were completely overwhelmed as a mother.

When our son Caleb was born with Down syndrome.

I felt like I was suffocating at first; like the world would never be right again. I had no knowledge of people with challenges – what their lives were like or how to mother someone with a difference. It took time, it took support, it took him guiding us and teaching us.

We eventually found the path wasn’t so different. It’s challenging for sure, but it’s a beautiful thing to recognize that our world has broadened so much by having Caleb in our lives.

Is there anything you feel that you have lost about yourself since becoming a mother? What have you gained?

When I was young, all I ever really wanted to be was a “mom”. So I would say not really. I’ve had quite an eclectic career path including both for-profit and not-for-profit roles. All those roles though had led me to meet the most interesting people, and really prepared me for who I am today and what I do now.

What do you want your child(ren) to learn from you?

Love, kindness, empathy, responsibility, community, faith, friendship.

Since it is Down Syndrome Awareness Month, what is the most important thing you want people to know about Down syndrome or about being a mom to a child with Down syndrome?

I could write on this point for a dozen pages or so, but I would love people – especially parents who don’t have children with unique (special) needs to know that our lives are not so different than yours (in our personal experience). Day-to-day living with Caleb is very similar to bringing up his sister – school, church, activities, friends, responsibilities. We depend more on supports with Caleb (therapies, etc). but we also have plenty of wonderful activities to do each week and throughout the year. Our local community is very supportive of people with differences, and that’s been huge for us.

There are things that we have and will put into place for Caleb that we didn’t have to with Courtney and our older children – financial strategies and educational plans. We look ahead and plan more for him most definitely. But there are many who love Caleb and are there for him – helping him to become the best he can be. Whether that’s owning his own business, or working for someone else, we hope and pray that he grows into a productive, happy young man who loves the Lord and loves his fellow man. Including him in community events and traveling has helped.

I would ask other parents to teach their children about “difference”. That having special needs or being a different skin color adds to a beautiful variety to community – wherever you might live. We believe that Caleb is “more alike than different” but also the “different is beautiful” too.

#Momguilt – It’s a Real Thing (but why?)

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The other night I was in bed with a pair of hands around mine and a sweet little nose touching my nose. I watched my son go in and out of sleep for hours. He was sick and the only thing I knew to make him better was to snuggle and tell him everything was going to be okay. But, in the back of my mind, I was thinking about everything I had to do the next day for work and how him being out sick was just going to be so incredibly hard.

Cue the mom guilt.

Luckily, I work at a wonderful place that has a lot of flexibility, but this got me thinking about the many times I have felt overwhelming mom guilt and the reasons why.

I feel guilty for working.

I feel guilty every time I don’t make a healthy dinner.

I feel guilty whenever I lose my patience.

I feel guilty every time I am distracted by something else.

I feel guilty that he watches TV.

This list could literally go on forever.  I never experienced a feeling quite like mom guilt.

So why?

Why do we, as mothers, have this feeling like someone is ALWAYS watching over our shoulder and questioning the decisions that we make? You know why? Because they are. Every day I am seeing someone on social media (or even at the grocery store) berate other mothers. It’s kind of sickening and it needs to stop.

I remember Kim Kardashian posting a photo of her son, around 14 months old, in a car seat that was forward facing. You would have thought that she put the kid on the roof of her car. Reading all the comments made me feel awful. I put my child forward facing at 15 months. Does that really make me a bad mom? Some of you may think so.

I had such mom guilt because of what other people thought. But, again, why? This is my child. I am his mother. We make the choices that are best for our family. Why should I have to worry about what every one else thinks?

Society keeps pushing crazy standards on mothers. The newest example being Kate Middleton stepping out hours after giving birth. I can 100% guarantee that she didn’t feel up to getting dolled up to introduce her son to the public (I don’t think I had even showered at that point). But, society demanded it of her and shame on us and them.

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A healthy meal of ramen, pizza and green beans. Hitting all those great food groups.

 

This is one of the biggest reasons that we started this blog. We need more open and honest mothers. Although we’ve only done a few interviews, I can already see how much us mothers are alike (regardless of our children’s ages). We have the same concerns and the same goals. We just need to make sure that we have each other’s backs a little more. Just because they are not doing  things the way you did or want to does not make them a bad mother.

What I have learned, in my two and a half years being a mom and 33 years being alive, is that you have to be an example. All mothers want their children to grow up kind. Show them what that means. Ben is constantly watching my reactions and listening to my words. You have a chance to raise a beautiful human.

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Oh, Target. Be still my heart.

 

You see a mother struggling with her two year old in the Target line? Smile. A sincere smile goes a long way. 

See a mom traveling alone? Give her a hand.

Co-worker have to stay at home cause of a sick kid again? Ask if they are okay. Don’t roll eyes.

Be helpful. Not harmful. We are all doing our best.

We are a tribe and that tribe is called motherhood.

-Lisa