Tag Archives: disability

When Leading by Example isn’t Enough

Reposting in honor of World Down Syndrome Day 2015

(originally posted on 3/21/14)

While on vacation recently, we attended a church breakfast to meet an esteemed colleague of Paul’s.  They had an adult daughter with significant disabilities. After speaking with the mom for a while, I called Mia over to say hi.  But the minute she saw this woman in the wheelchair, she hid behind my legs.   I tried to pry her fingers from me and make her say hello but she refused.

You could see the fear in her eyes.

And I was mortified. 

Here her father and I have devoted our lives to loving people with special needs and their families.  To encouraging their parents and siblings. To spreading awareness about their abilities versus their disabilities.

And my own daughter was scared.

All she saw were the differences.  The wheelchair.  The drooling.  The erratic movements.

And I was so disappointed.  I wanted her to see what I saw.  A beautiful soul.  Someone who is as valuable as you and me.  A daughter, a sister, a friend.

Did I really expect my 4 yr old to run over and kneel down next to the wheelchair at the appropriate level?  To say hi and be ok with a non-verbal response?

Uh, yea, I did.  I actually did.

I thought I had been leading by example. That she had watched me interact with all the students with special needs at my theatre program.  That she had seen Paul’s disability ministry and the way we accept and love all the kids in that program.

I thought that our strong example would set the tone for her own response when it came to interacting with people with special needs.

Isn’t that what we are supposed to do as parents?  Lead by example?

Maybe.  But sometimes it’s not enough.

Sometimes it’s the conversations that make the difference.  That drives home the point. That allows the other person to ask questions, to explore their own doubts and fears and judgments.  To bring to light topics that might otherwise remain hidden.

It’s not enough to merely not bully.  We have to talk to our kids about bullying.  It’s not enough to accept and honor people with disabilities, I need to talk to Mia about differences.  About each person’s uniqueness.  About how cool it is that people who don’t walk can use wheelchairs as their legs.  About the little boy in her Sunday school class who uses a communication device for his voice – because he does in fact have a voice.  And how we all have a voice – whether we communicate with words or expressions or with sounds or with a device.

Setting the example sends a strong message.  But sometimes, it’s not enough.

And so that is my plea today.  To not ONLY lead by example, but also to have those conversations.

And guess what, it’s not just for the kids. You might have some of your own fears and misconceptions.  That’s ok – it’s ok to recognize and acknowledge that you have those fears.  Those judgments.  But it’s not ok to hold onto them.  Not anymore. Educate yourself.  Volunteer somewhere.  Befriend someone different than yourself.  It will change the way you see the world and ultimately the way you see yourself.

I’m not talking about tolerance.  I kind of hate that word. Things I tolerate?  I tolerate my kids fighting for about 5 minutes.  Then I’m over it and someone is in trouble. I tolerate my husband watching 9,763 basketball games during March Madness because I know he loves basketball (and because I don’t tolerate Fantasy Football).  Tolerance is not the goal when it comes to loving others who are different from ourselves.

What I’m talking about is acceptance.  About seeing others as equals.  About focusing on the similarities WHILE appreciating the differences.  Because as we’ve all heard before, we really are more alike than different.

jennaToday is World Down Syndrome Day. March 21st.  People with Down syndrome have an extra copy, a 3rd copy,  of the 21st chromosome – hence the significance of the date 3-21.  It is that extra chromosome which plays a role in the physical and developmental characteristics of someone with Down syndrome.  But that’s about it.  It doesn’t define their personality.  It doesn’t determine if they like the Cubs or the White Sox.  It doesn’t determine if they love to dance or play chess.

But that extra chromosome?  It does have power.

It’s got the power of unconditional love.

Of forgiveness.

Of changing perceptions.

Of changing people.

You have that power too.  With your words.  With your actions.

We are told that the 2nd greatest commandment is this: to love others as we love ourselves. Not to love only those that are like us.  Not to love only those we are comfortable being around.  But to love others.  All others.

If you are lucky enough to know someone with Down syndrome or any developmental disAbility, be sure to thank them today for the difference they have made in your life.

Be intentional about befriending someone with special needs.

I promise, it will change your life for the better.

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Finding Strength in the Midst of Weakness

Is it still April Fool’s day?

Because being 7 months pregnant, moving into your parent’s house, being responsible for a 4 and 2 yr old, and completely throwing out your back must be a joke.

It just has to be.

Oh wait. It’s not. That’s actually my life right now.

sos1I can’t stand up straight. I can’t put any weight on my right leg. I use my tall laundry basket as a walker because it slides across the tile floor better than the rolling chair. I would say I look like my 94 year old grandma except that I just saw a video of her walking at a rehab facility and she looks in much better shape than I do.

I go about the house putting things I need in the laundry basket and then beg my 2 year old to help me with everything else. So far this morning, she has thrown out her own dirty diapers, let the dog out, fetched my phone, and spilled her cereal all over the floor which the dog proceeded to lick up while I laid there screeching out instructions and commands that neither of them took notice of.

When I tried to distract my daughter from pooping so that I didn’t have to move off the couch to change her, I realized that um, yea. I need help.

I think that’s why when my mother-in-law offered to stay with me, I was nearly brought to tears.

Ok, fine. I cried.

And I paused slightly before saying yes. And of course my yes came with “only if you want to” and “don’t feel obligated” and “are you sure?”, followed by a slight internal panic of the house is a mess, I can’t get off the couch, there is a sticky spot on the floor where dog spit mixed with milk and cheerios and OMG OMG OMG.

But really, is there any other choice? I. can’t. move.

And so I said yes, please come and stay with me. Please help me.

Just don’t judge.

And I guess that’s it. That’s the fear that often keeps us from accepting help.

The fear of being judged. Judged for showing that I am not strong enough. That I just can’t do it myself.

That alone, I am not enough.

We say yes to everything that shows our capabilities. That shows what we CAN do. How MUCH we can do. We say yes to everything that puts us in a good light. Even if it annoys us. Even if we don’t want to or don’t have time. Even if it comes at the cost of our families or ourselves.

We are much more hesitant to say yes to accepting help. To displaying our weakness for the whole world to see. Is it my fault my back went out? Am I stupid for picking up my 4yr old child when I’m pregnant? Am I a failure because I left everything till the last minute and now I can’t do them because I’m hurt?

In my moments of panic before she arrived, I thought of those hundred things I put off until today. Like finish packing for our move and cleaning the house. Things like grocery shopping and showering.

But the truth is I can’t do it. I actually, physically can’t do it. And it’s shocking to me. Because I am an excellent faker. I can fake confidence. I can fake competence. And I can even fake ability (unless it comes to sports). But I can’t fake standing up or walking. My muscles either work or they don’t. Kind of the reason I can’t fake it with sports. My muscles just don’t do what they should do in those situations.

So I accept the help. And it’s hard. It’s humbling.

But here’s the thing I’ve learned about accepting help;

It’s freeing.

I know, crazy, right?

But it really is freeing. We are made to be relational people and I think in an effort to be independent and strong and show our abilities, we forget the relational part. We forget that we were not made to live alone. To isolate. And it gets dangerous when we strive to appear strong by being independent.

Here’s the irony. Some of the strongest people I know? They are the ones that ask for help. That rely on help. That don’t make it through a single day without help.

The mother of a boy with Cerebral palsy who hires a respite worker so that she can catch up on sleep. The father who brings his two kids with autism to the Special Friends Sunday school class so he can go to church with his wife. The parents who go to marriage counseling to ensure they keep their relationship strong under the pressure of receiving a fatal diagnosis for their child.

When I think of all these families affected by special needs, I don’t see weakness.

I see strength. They can’t fake it. There is too much at stake to even try. And so they accept the help. They even ask for it. Sadly enough, sometimes they have to beg for it.

And I guarantee they have wished on many occasions that it didn’t have to be this way. That they could do it all on their own. But they know something we don’t. They know they need community.

They aren’t resentful of all the things they have to do. They are enlisting people to get those things done.

They aren’t spending precious family time trying to make their outside persona look perfect. They are inviting people into their beautiful mess.

I think we could all learn a thing or two from these families.

So today I am forced to accept the help. To be vulnerable and invite my mother in law into my messy life. In the non-showered, kids are a mess, house is a disaster, sorry-but-this-is-my-life kind of way. Because I can’t fake it anymore.

I definitely can’t fake taking care of this baby in my belly. That has to be done for real. So for the sake of the baby, I will accept help. For the sake of my 2 year old who shouldn’t have to learn how to change her own diapers (though using the potty would be nice), I will accept help. For the sake of my 4 year old who wanted to go to school so badly today that I called a sitter to drive her home, I will accept help.

And I will remember the freedom that comes with that help. With suspending judgment on myself. With allowing myself to be vulnerable in my community.

While looking for a new house, we often heard that privacy is really important. But to be honest, I am excited that where my backyard ends, someone else’s begins. That to the right and left of our house, kids are outside playing.

Because being tied to a community is more freeing than living with no strings attached.

Because it’s in community that you can ask for help. That you can help someone else.

The bright side of my April fool’s joke of a life today? Catching up on Nashville and Parenthood and Grey’s Anatomy.

So accept the help – because even if the only thing you get out of it is catching up on some primetime somewhat-trashy TV, it’s worth it.

2 Corinthians 12:9 “For My strength is made perfect in weakness”

 

 

 

 

 

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