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 

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?

To Cuss or Not to Cuss…7 Tip Offs

Potty mouth?

Cuss / noun
1 an annoying or stubborn person or animal : he was certainly an unsociable cuss. 2 another term for curse (sense 2).

Disclaimer: I’m not using a moral arguement against cussing, though you might expect I would, at a site with spiritual flavor like this one. While, many may say it’s a sin to cuss, I think what may be the truest thing is that the intention of using the vulgarity that is the real issue at stake. Nevertheless, I won’t go in that direction. My contentions are not nearly so deep or heartfelt. This is simple practicality and common sense at work:

Simply put: I don’t think foul language is powerful enough. I finding it lacking. Any great use of the stuff tips me off that I’m in the company of communication amateurs.

In truth, I’m not very offended by expletives. The shock wore off in high school. And high school–childhood–is about the only time a certain amount of cussing is, sort of, understandable. By nature, kids don’t know how to express themselves very well. Salty language makes rookie humans feel older and more formidable. It gives them a sense of power, as they flex their ” ‘I’m growing up’ muscles”. Yet, it’s the running myth that if something is bleeped on tv, it resides in the realm of “grown-up language”, and signifies something more heady and legit. In fact, expletives are quite banal.

I cuss quite rarely, and when I do it’s actually because I’m having trouble expressing myself. In some foolish desperation I concede to inferior “describing words”. So, really, cussing takes away from our points, rather than aids them.

Just for the sake of developing better communication, we needn’t use them. Maybe you enjoy tossing around a swear here or there. I don’t really care. But here are 7 points to remember on this topic:

7 Cussing Tip Offs

misnamed swear tin (for keeping fines)

1. Cussing quickly reveals one has a diminished vocabulary or the inability to use their vocabulary very well. (This can become a worsening habit also. Hence, it is sometimes combated with a Swear (fine) Bank.)

2. It displays a rather uncreative mind. (What could help? Simple: A thesaurus.)

3. If a cuss word can be used as an adjective, noun, and verb, it’s hackneyed, and by consequence, impotent. Let’s just say it’s, “lame” in a hobbling sense.

4. While cussing may somehow help one reveal emotions, or relieve stress, it doesn’t help one’s case. Quite the opposite. Logic is a better choice. Give it a try.

5. Foul language tells a bigger story about the person and his/her hang ups than it does about whatever the person is trying to convey. (It’s sort of sad, really.)

6. Cussing offends people for a myriad of reasons, but strangely enough, much use of it boils down to spotlighting simple bad manners and poor taste. Throughout history, “vulgar” language has some sort of reflection on social or economic status. [Ex: A mother says to her child who has been running around with the kids from “the other side of the tracks”, “No, honey, we don’t talk like that (or them).”] Most often people mentally associate foul language with an uncouth boorish social class, or uneducated and unrefined upbringing.

7. “Dirty words” are given meaning by a culture, not the other way around. What is the massively cussing person trying to prove, then? And why? [That’s the bigger question.] Here, subtext trumps communication. so probably a #fail

What are your thoughts?

My favorite cuss quote:
“Are you cussing with me?” -Fantastic Mr. Fox

Traveling Light with Crazy Love

Francis Chan

We don’t just have upon us a crisis of faith, but also a crisis of faithfulness.

We’ve been reviewing Francis Chan’s book Crazy Love. I encourage everyone to read it. It’ll do you good. Also, it makes an interesting and thought-provoking small group study, or Sunday School class.

"Crazy Love" by Francis Chan

This last lesson was on Risk and Faith. Chan asked everyone to do something in their regular life that requires faith. He asked that we abandon the typical planning we do to minimize our risk. We should do something others could think of as silly, and allow ourselves to live and act in a more vulnerable way. We shouldn’t rely in our stuff to satisfy us. We should live bigger lives.

Along the same lines, Rolf Potts leads this sort of recommended simpler type of lifestyle. He calls it vagabonding. (I found out about Rolf through the Tim Ferriss site. Thank you, Tim.)For Potts, a travel writer, his style is not just a method of travel, but a way of life. It’s unlike the American way of life, because it does not trust in stuff.

I’ve wondered if it’s the case that in America we seem to act like “in god we trust” refers to the money itself, or the things we can buy with it.

We do a lot to feel safe. We buy insurance to minimize various kind of threats. We buy things we feel sure will help us, or at least soothe us. What is the lasting consequence of this approach? A false sense of control? Feathering our pillow of self-sufficiency? Other things…

Rolf Potts takes the theme of traveling light to a whole new level, as he now begins his No Baggage Challenge: Traveling to 12 countries in 6 weeks—With NO baggage (not even a man purse/satchel). [His blog details his travels, and his packing techniques are also quite useful.]

The journey of faith is the same way. When we seek out the comfortable, and we travel heavy, by preparing (mentally or physically) for every potential event, challenge, or threat–something important gets left behind. Perspective for one thing. But what else?

In the life of faith, “taking nothing for the journey” means that one must trust in God’s provision (and his way of providing), trust others, and build relationships. It’s not about what we’ve packed (prepared) for, it’s about the trip itself. It’s about being brave, and opening up to others, and the experience of not being weighted down (both literally and figuratively) by our presuppositions: What we think the trip should look like, and feel like.

You don’t like bumps, you say? Sorry, it’s bumpy. You just might have been insulating yourself. For some perspective… Think: padded cell.

The spiritual journey (journey of faith) is undertaken so optimal preparedness is removed as an option: It’s a method of living, not to be comfortable, but to survive, live, and eventually thrive, where you are, as you are. You come as you are. When the going gets tough–and it will–you stay. [The only thing you “plan on” is love and loyalty.] You work it out. You don’t let yourself have but that choice. You live has though you don’t have a chance/option to flee–like we are too often ready to do. We trust others, and God with abandon, despite the risks, or pain that may/will come.

Why? Because it is the surest way to growth, more rewarding experiences, and a sense of being in a Story bigger than yourself and your self interests. In spending ourselves, we gain our lives.

When we take a risk to help or love (without examining the our potential losses, and assessing all the personal risks) we live by and in faith, not by sight.

[Now, realize, I’m not talking about a life of folly, or veritable reckless behavior. I’m talking about being okay with discomfort, and sacrificing the known and manageable, for something greater at stake.]

What could that look like for you?
Please-Leave your ideas.

Maybe giving away the extra car to someone who needs it? Opening up your home for someone else to live in? Inviting a family to your home for supper once a week? Using a paycheck to buy someone groceries?

What kind of faith will you live by?

In this sense, a little pain goes a long way. Soon, our sights move away from ourselves in pursing selfless faithfulness.

AND-How light can you travel? (on vacation, etc.)

Comments, thoughts, and questions welcome.

Heritage: A (Dulce) Sweet Celebration

Puerto Rican favorite “Arroz con Dulce” (sweet rice pudding)

We are having a “diversity picnic” with Nathan’s class. Few people, at the outset realize my Puerto Rican heritage. I was born there, and my dad was Puerto Rican (my mom is of mainly English and welsh descent.)

I’m going to surprise all the party-goers with my ethnicity today.

SO- I decided to try one of my favorite dessert recipes. “Arroz con Dulce” Sweet Rice Pudding with spices of ginger, cloves, cinnamon) with coconut creme. It’s really good.

The Arroz con Dulce recipe I used here. (I always skip the raisins.) Let me know if you give it a try!

What ethnic foods have you made recently? (And don’t say the easy stuff. Pizza, spaghetti, and tacos, don’t count, unless-of course- you made the stuff from scratch, or it’s incredibly unique somehow.)