What Parents of Disabled Children Wish You Knew (PART 1)

Nathan is weird. Embrace it! (Pssssst. You’re weird too.)

I’m taking a Theology of Disabilities course right now. I have to admit that some baggage that I didn’t realize I was carrying has gotten heavy. I’m putting it down, starting now. The truth is, I realize I have felt disappointed by the church, and by my church. I’m hurt that the church has failed so badly in helping the disabled (specifically my disabled child) feel like they really belong. It’s not just about allowing the disabled to be there near us, it’s about really knowing them, and really appreciating who they are, because God made them, and they are valuable.

Ya see, times have changed. When I grew up in the 1980s, we’d all make fun of kids that “rode the short bus”…maybe not to their face, but imitating “Tards” was something I excelled at. I was hilarious. I was the disabled one, if we’re telling the truth here. I was spiritually retarded. God gave me a precious gift in my son to show me God’s true heart. To show me my true humanity. The disabled personify the weakness we avoid. Nathan helps me get over my human/secular and foolish ideas about what it means to belong and be successful in God’s worldview.

Here’s the other cool thing. God gave me Nathan to share with you, too!

I think, my generation still fears the disabled. I doubt many will dare admit it. (It’s not politically correct, and we can’t look like uncaring jerks, right?) To most of us, the disabled are still a stigmatized and strange group; and we don’t know what to do with them…we don’t know what to do around them…we aren’t sure what they need. It’s all quite uncomfortable. Gosh, we are so glad we are not them. And we’re afraid. Afraid of the unknown and the unfamiliar, and the “other”.

Here’s the surprising twist. Our (non disabled) kids don’t have the same mentality. They don’t. Over the last 10-20 years, those with disabilities haven’t been sent away to special schools. They have been included, or in far closer proximity to typically developing children. The secular, public schools have outdone, and surpassed the church in this area of grace. They have honored and accepted disabled kids more than the church.

Please. Read those 2 previous sentences again…Slowly. Okay, never mind. I’ll just state it again: They (secular institutions and those who are a part of them) have honored and accepted disabled kids more than the church has.

(Yes. You should feel convicted right now. Even crying wouldn’t be over-the-top.)

As a Parent:
As the mom of a disabled child, I find that typically developing children, with just the a little bit of prompting or advice, adjust very well to interacting with my son, as if he’s a real human being who desires friendship. They even enjoy him! (It’s not just charity. It’s reciprocal friendship. It’s the kind of relating where everyone wins.)

On the other hand, I find that it is the parents of these (non disabled) children who are fearful, and unwilling to engage with my son, beyond the superficial. They are fearful enough to not help their child build friendships, or regularly interact with a disabled peer, or near-peer. They don’t create an easy opportunity for their child to grow, learn and become more compassionate. They don’t make it priority. As a child’s primary guide, this is a gross failure.

Church:
But this is different at church, right? It’s a place of acceptance, and hospitality, and belonging, right? God’s love is shown in tangible ways, right? WRONG. My son has more meaningful relationships and friendships, and more grace shown to him with non Christians, in secular (even godless) environments, and with neighborhood children. (See, the government schools have been telling these kids that atypical kids were worth interacting with.)

KIDS @ PLAY
Once upon a time, I bemoaned to a woman at church the fact that Nathan had no friends at church, no meaningful interactions with any church children, no invitations extended to him to play with them, go to their birthday parties, or even watch a movie together (even after we had make a lot of efforts to create those situations and occasions). Her reply, “Well, I can’t force my kids to play with certain kids, and to like certain friends.”

I listened to her statement, and I didn’t really know what to say. This mom was prominent in the church. I didn’t challenge it. Upon reflection, I should have said, “LIKE HELL YOU CAN’T!”

As parents, we do it all the time. We curb or we encourage friendships for our kids regularly. Do we let our kids hang out with teenagers on the corner who are smoking? Uh, no. Does a naughty and petulant child get to sleep over? No. What about the children who bite, hit, or cuss? Do they get to make cookies in our kitchen with us? Nope. We influence our kids all the time. The fact is fear stops our hospitality. We stick with our comfort level, and pick our favorites.

I’m here to tell you that God has given us these different sounding and acting people as gifts, to teach us so much, but we don’t choose to interact, learn and be gracious.

“But I can’t find a disabled kid… What am I supposed to do?”
Well, try harder. Open your eyes. Ask around. Do you want the truth? The facts? Here they are: Do you live near 5 other homes? If you walk down your street, and pass 5 homes, 1 of those homes will be effected by disability.  1/5 of families are effected by disability everyday. 

Do you know more than 6 children? If you know 6 children, 1 of them is likely to have a form of autism, or developmental issue.

Sometimes, I hear this: “Is it my job? How can I be responsible for knowing other people’s needs. I’m just not in their shoes.”
Yes. It’s your job. A frequent reason (or cop out) is saying that the parents of disabled children should just say what they need, and make the efforts to get their kids included. BULL CRAP!

Just thinking up a list of wants and needs would sound exhausting to a parent of a disabled child. Some days, they are just trying to make it through the day without losing their minds. Over 85% percent of marriages don’t survive when a child has a disability. It’s tougher than you think it is.

Listen. These parents have enough to deal with. Wake up! They have enough to do than to also make sure typical children are accepting and relating to their disabled kid/s. Mostly, they are tired. It doesn’t feel worth the effort. Failure seems sure. They are surrounded by frequent disappointments, the broken dream of not having a normal kid, and lots of scheduling issues and therapeutic measures in school, community, and other locations that help their kid or their family. They don’t have enough energy to get people on board with that type of stuff on top of everything else. (Ask them what a typical week is like, go ahead.)

YOUTH GROUP
My son went from being very excited to be old enough to be included in the middle school Sunday School section (See, in 5th grade…you get to sit on cozy couches!!) to now, about a year later, in 6th grade, detesting Sunday School, feeling like an outcast (even more than he had before), and now he doesn’t even believe in God. He says, “God is an unbelievable story.” It must seem like a fairy tell because he doesn’t see the love of God displayed toward him.

Based on the way many Christians behave toward him, he has an excellent point.

Like plenty of other children with autism or developmental disabilities (BTW…”developmental disabilities ” is nicest term for “retards” or the “mentally retarded”), Nathan doesn’t get abstract ideas like, “Is Jesus in your heart?” (He hears, “Is a bearded man in your chest cavity?” Utter nonsense!)

Nathan can’t see or touch Jesus; we have to be Jesus for him. He has to experience love-in-action, benefit from it, and be allowed to return this love as an equal. I don’t know if it’s too late for my church to be hospitable in the way that he’ll to want to be a part of it. I will keep that hope. I’m writing this now to start a change in how we respond and interact, so other kids with disabilities can feel like they belong, and are loved and accepted.

TIPS to get you started (for kids and adults)
• Interaction doesn’t have to be hours of incredibly awesome friendship per day or week. A blood brother bond is not necessary. But, the interaction should be authentic, not out of duty or pity. Something simple like making something for them, sharing something, or just chatting pleasantly with them is plenty for starters.

• Asking about their interests (direct questions are best, maybe even just asking “yes or no” questions, at first), and then actually listening to them (even when you may not always understand them or know what to say) is helpful. They WILL understand when you care about them. Just take a bit of time to be gracious. It’ll do you good.

• Inviting them over for a snack, to watch a movie, take a walk, ride bikes, play with your pet, or play videos games may be enjoyable for them, and of course invite the family if possible. Ask if you can visit them. Create times that are specially for them, even if they are brief periods. 30-45 minutes is fine. (But realize they will love you for it, and want to do it again soon. My son never seems to stop talking about the boy we invited over to play, about 2 months ago.)

• Offer them yourself. Nothing fancy. Invest in them for real, emotionally, and with some of your time and efforts. When you offer authentic friendship it looks different than just a saying or doing the “right thing”. You take a risk.)

• Help them make a craft, picture, or a simple snack, play a game, look at a book, build with legos, and take the time to talk to them, or just be close by and attentive, etc. and show them you like them.

• Offer the parents of disabled kids respite time. Give them an hour or two break, and get the help, information, and extra helpers you may need to care for the child. (Only 10% of churches do this. Change this statistic.)

• Be inviting.
What’s the worst that could happen if you invite a family over to your house? Maybe the child will do something unpredictable, and you won’t know what to do? Maybe you will feel uncomfortable? Get Over it.

MOVING FORWARD:

Where and how have you seen the disabled as full-fledged participants in your community or ministry? (How was it done rightly?)

AND–
How can I help you? If you want to show kindness, or God’s love to a family of a disabled person, or to a disabled person, What are your questions or concerns?

What about including or interacting with the disabled would you like to know? 

What are your fears? Share them.

Let’s get this ball rolling. No question is off limits. Your comments, or experiences can be shared as well.

Thanks for reading. Thanks for changing for the better.
-Lisa 

The Story Behind the Song “Jesus Loves Me” (a poem by Anna Bartlett Warner)

Here’s the Story behind the song Jesus Loves Me.

The song most of us have sung, Jesus Loves Me was written by Anna Bartlett Warner  who was born August 31, 1827 – died January 22, 1915. Warner was an American writer, the author of several books, and of poems set to music as hymns and religious songs for children. (Via Wikipedia)

Anna’s family home was quite close to the United States Military Academy at West Point, in New York, in the era just before the Civil War. Each Sunday Anna taught Bible classes to the cadets. Her remains are buried in the military cemetery, and her family home is now a museum on the grounds of  the United States Military Academy.

Undoubtably, her most well-known work (and the point of this post) came from the poem from her and her sister’s 1860s quite sentimental and best-selling novel entitled Say and Seal. It was soon set to music by William Bradbury, who added the chorus we still sing today in one of the most well-known children’s Christian hymns of all time…you guessed it! Jesus Loves Me. Many soldiers on the battlegrounds during the War Between the States sang this hymn and found spiritual comfort.

In a scene that brought many people to tears in the novel, a child lays dying and is comforted from his pain, as the main character recites a poem:

Jesus loves me! This I know,

For the Bible tells me so.

Little ones to Him belong;

They are weak, but He is strong.

Children of God, let it be your simple prayer today.

Blessings.
-Lisa 

9/11; and the Interview & Confessions of a Funeral Director…

 

View my 3 Part video interview with Caleb here.

 

The 10th Anniversary of the 9/11 tragedy a week from this Sunday. We will once again see images and recount the horrors of that day, and try in memorial to accept the reality of this world. Most of us don’t encounter death and our own mortality too often. Most of us don’t constantly see suffering, and witness grief and loss.

Please take some time today, or this weekend to remember that the events of 9/11 still bring pain to many. Loved ones are missed, and we can’t gloss over the national tragedy that left a collective hole in our hearts, even ten years later.

This seems a fitting time to discuss an author who is very acquainted with death. It’s his job to be, and his perspective can be very helpful to us. As promised a couple of weeks earlier, the following is my personal interview with blogger and upcoming author Caleb Wilde, a 6th generation Funeral Director, seminary student, husband, and expectant adoptive dad.

My Questions for Caleb:

 

1. Being a 6th generation funeral director, you have quite a unique vantage point on life, loss, and mortality. How do you think you live life differently than other Christians because of where God has placed you?

 

Caleb: In traditional religious calendars, the day in-between “Good Friday” and “Easter” is called “Holy Saturday”.  “Holy Saturday” is the day the disciples’ hopes and beliefs were engulfed in death and silence, as they viewed their Messiah’s death without the knowledge of the resurrection.

In some sense, I live the life of Holy Saturday.

As funeral directors, we’re paid by families to be a human shield to death, whereby we make death somewhat easier, less real and more proper.  As this human shield, I’m affected.  I’m affected by the brokenness, by the grief, by the hopelessness I see in faces, by the newly fatherless/motherless children, the tragic deaths and the accidents.

All this has made my personal faith more sensitive to questions of God’s goodness and justice.  It’s not easy for me to understand ideas of “eternal hell”, or ideas of “meticulous divine providence” or even “absolute foreknowledge” or “omnipotence”.

Sometimes I wonder if I’m still a Christian.

 

2. What do people misunderstand most about your work?

Caleb: We’re a lot like pastors.  Our jobs are really quite similar, except that one is recognized as “ministry” while the other is “business.”  That’s probably the largest misconception … there’s no way funeral directors can meet with grieving families through the most difficult time of their lives and come out on the other side as “business people.”

Everything else is true, though … we are dark and we are odd people.

In ancient times, death practitioners were ostracized from normal society by rule.  Today, we’re partly ostracized from the norm of society by practice.

 

3. The constant stream of customers (people dying, and their families burying them) can make one grow numb or cold toward the concept and process of death and burial. Do things still surprise you or impact you? What kind of things?

Caleb: There’s something so unnatural about death that (save the very old) it’s difficult to become numb.

 

4. You’ve probably thought about what you’d want your own funeral to look and sound like. Can you tell us about that?

 

Caleb: About two years ago, I started taking one minute video clips of myself, so that by the time I’m 70, I should have a montage of age progression videos that can be used for my funeral.

I’ve also talked about recording a message from myself to my family and friends that could be shown at my funeral as the eulogy.  But, by the time I’m ready to die, I figure they’ll have holographic projections, so I’ll wait for that tech until I record my final goodbye.

 

5. The saddest funeral I ever went to was for a 13 year old boy who took his own life. What have you learned about people during the time of more tragic circumstances that you’ve been a part of?

 

Caleb: Funerals/death are a perfect storm: you have death, the inheritance money, high emotions and family you might not like too much who are around you all the time.

Funerals intensify people’s real character.  You see the best in people and you see the worst.  The bad people will do horrendous things at funerals, like start fights, curse out their family members over money.  And you can see Jesus in the good ones.

 

6. Do you find your work mostly depressing, hopeful, profound, mundane, etc.? Would you recommend this vantage point to others?

 

Caleb: It’s a tough ministry that has little boundaries.  Many funeral homes are also generational, so many of us work with our dads, grandfathers, uncles and cousins, which can make this at-need work that much more difficult to set up healthy boundaries.

Similar to any ministry, I think there should be a passion for death work … a calling of sorts, whereby you know this is what you’re supposed to do.  And being a “calling”, few have witnessed this vantage point.

It’s unique.

 

7. Do you want to stay in the family business? Why or why not?

Caleb: Next question : )

 

8. Tell us a bit about how you view suffering, pain, and death from your unique perspective…which probably has a lot to do with the message in your book.

 

Caleb: I’ve built my understanding of God around suffering, pain and death.  It’s a local theology.  And my understanding of God, suffering, pain and death in light of my faith is the content of my upcoming book, “Confessions of a Funeral Director.”  Hopefully, it will be out in less than a year.  You can get an idea of how death has affected my view of God at my blog, www.calebwilde.com.  My book, though, will contain much more narrative than my blog.

 

9. What’s your best idea for a Smart Phone app.?

 

Caleb: I live near Lancaster County (PA), home of the Amish and Mennonites, so there’s a lot of intermarrying in these parts.  Not to mention, most of the towns in the rural areas of Pennsylvania have families that have lived there for centuries, so many of them are related.

I have an idea to partner with Ancestry.com and create an app the lets you bump smart phones with another person and it will tell you how you’re related to them.  My theory is that this will greatly help the evolution of humans by creating a purer gene pool.   The apps name is “Bump it before you Hump it”.

 THANK YOU, Caleb, and best wishes on your book. I’m really excited to get a copy. 

The working title for Caleb’s book is Confessions of  Funeral Director. A bit more on that here.

So, my reader friends, what are you curious about? Ask Caleb your deep, dark, or even silly questions!

Things you get WRONG in Bible Study

(This is being submitted to the Deeper Leader Synchro Blog sponsored by Evangelical Seminary. Find out more here.)

WARNING: This post may rock your world. (a.k.a. “BOOM post” )

How should we read and study the Bible?

Debates on this will rage, but one thing we often assume that we can simply read the Bible and understand it. Essentially, the Holy Spirit just pops the correct meanings into our brains. Right?

If that were the simple truth, we’d all be, at least mostly, on the same page in Christianity, and we ARE! Um. bzzzz. No…not. at. all.

The Holy Spirit will convict our conscience of sin, and the Holy Spirit help us understand certain things about God’s nature and his grace. Yet, some huge obstacles lie before us concerning the details of Scriptural text.

These details can, and do turn into doctrine or false teaching that fall outside the intent of the text. In clumsy hands, dogmatic presumptions of the Holy Spirit’s opinion have led to all manner of errors, deceptions, injustice. And this study method, if you will, has even started more than a few whacky cults. Yes, and some involve koolaid.

SO!
If you forget EVERYTHING about this post, please don’t forget this. When interpreting the meaning of the Bible (a.k.a. engaging in hermeneutics) remember: A scripture passage cannot mean something different than its original intent.

Huh? What?
Let that red text sink in. Please…Re-read it.

Seriously. It’s a huge deal once you truly comprehend it, and even bigger when you apply it.

A scripture passage cannot mean something different than its original intent. (That’s a needed re-refresher. Please bear with me.)

Understanding the Bible involves a continual tension between discerning

Our understanding and the writer’s intent.*

Here are just 5 a mere few of the obstacles that can hinder a proper understanding of scripture:

Language barriers (Ex. Jesus spoke Aramiac, The New Testament was written in Greek (a dead form of the Greek language now,) and English was taken from the Greek. This book collection HAS TO be divine and God-breathed to still transform individuals, whole communities, and cultures through its message of the Good News!)

Historical distance barriers (Now is later. Stuff has changed. ‘nuf said.)

Cultural barriers (We don’t wear the same stuff, and do the same things, at all. period.)

Circumstantial differences (But one example: Every church has “its stuff” unique to it. Particular concerns and problems.)

Our lens/perspective, education, and experiences (I hope this is self-explanitory. If not, maybe this blog is too much for you. No worries. Just search this blog for “humor” and forget about this post entirely.)

Quick & Hot Tips for the Good Book

When reading, and attempting to understand a Bible passage,

– include paragraphs and sections, rather than a sentence, a phrase, or a lone sentence. (Nothing can twist scripture more than attempting to find meaning in a small phrase of scripture, instead of taking the complete thought and verbiage into account. You wouldn’t want to be taken out of context, so you know, do the right thing.)

Read a few translations (Don’t parse words. Just don’t. It’s major mistake! Chances are the translators had to give it their best guess. Plenty of words in ancient Hebrew, and Greek, won’t and can’t translate out of the original language. Translators disagree. A lot. So, don’t assume you have read the perfect word choice. The word may not have been used or known outside of that one, or just a few, times.)

Consult commentaries (These folks have dedicated their whole life to studying the Bible, the ancient culture, the history, etc. They’ve studied deeper, longer, and harder than you, and probably have some great insights from their research.)

Yes. This post was a “BOOM post”. It may come off sort of… um… strong. I see people all over the place butchering what the Bible says simply because they are naive. They haven’t bothered or known how to read the bible in a way that will get things at least mostly right. They start to sound goofy pretty fast. Next time you hear someone spouting off about a Bible passage, inquire if they’ve done the passage good justice by learning it intelligently in these few ways; then (as nicely as possible) challenge their mode of learning and teaching.

Bible study is a vital spiritual discipline, and like prayer, fasting, giving, and all the rest should be done through being better informed. Learning is a continual process. Keep up with it!

*Some of my information is straight from Stuart and Free’s fantastic book: How to Read the Bible for All its Worth. Many agree that it’s the book par excellence, for understanding and studying the Bible. Give it a whirl.

Did this post help you think of the Bible in a new way?
What has helped you understand what the Bible says?

Lay Your Burden Down.

"self-portrait"

Does this look like a helpless ass, to you? To be honest, it looks like me.

Today, I had an insightful time of devotional reading and prayer. I was convicted to lay my burdens down. I hadn’t properly realized how heavy my load of worries has been.

After I gave them to God to carry, I noticed how exhausting it has been to leverage them. My epiphany: I can be inadvertently as stubborn and pathetic as an overburdened ass, to the point where my load masters me.

Maybe you need to find some relief too.

There are about 20 days until Easter (Resurrection Sunday). The time is ripe to take a potent inventory of your worries, sins, and burdens. You are tired. You are more tired than you know. Don’t be stubborn, like me. Relent and give up your load.

Be encouraged–right now as you read this–to really take a two or three minutes to be aware of the weight and hardship of your current load.

For a minute, picture all of that as a huge backpack or bundle (see photo below for visual inspiration). Ask yourself: What are my burdens? Ask: Why am I carrying them so long?

Do you want relief?

female porter sherpa, mountain climbing

Accept God’s relief.

Now, put down your load. Put it all the way down. Try to stay with that visual image, and pray about it. What would you like to tell God?
What have you sensed in this short time of thinking about it?
And, what, if anything, is God prompting you to do?

Will you follow your savior up the mountain, and give up your load?

God’s strength and forgiveness is critical for us to recognize and accept. It is our saving grace. What a cathartic gift it is to lay our burdens down. Remember the joy of your salvation today.

Today’s verse for prayer reflection:
Matthew 11:28 Come to me, all you who are weary and burdened, and I will give you rest. -Jesus, the Christ

 

Feel free to share your thoughts, insights, reflections, random comments, or silly observations. We’re in this together. May your day be blessed.