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 

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.

Banqueting Table, Part 3: Factory Food and Slow Cookers

Mass produced factory food, simply re-heat.

I’m not a big fan of prepared foods, like the one you see above.

But, I have to admit, usually when food comes from a factory, it’s quick and simple.

It’s also sealed with cellophane and full of sodium to keep it “fresh”. How long could you keep this “meal” before heating it? …months for sure, maybe a year. It’s a bit of a one-size-fits-all cuisine approach, right?

A frozen meal typically comes tidy, in a divided plate. So, no mess, no worries. There’s no long prep time, no plate, just a piece of plastic flatware is needed-say a “spork”–to cover any food texture. One might not even need a napkin, if one eats it…calmly. But, I think, you’d have to be on the verge of starvation, have non working taste buds, or have little experience with eating delectable food if you wish to devour this quickly. Not too many salivate over or pine for pre-fab food, like only a mother a factory could manufacture.

When people want to “serve up” the love of God, or share the gospel can’t the same thing happen?

Serving up God. yum... ?

Sometimes not only are the workers few, but maybe what workers there are don’t know enough about the richness of the God’s banqueting table. Maybe they’ve been using the spiritual microwave too much. Or maybe they aren’t patient enough to let God into their kitchen and make the meal, and show ’em how it’s done.

It takes a while, it seems he likes slow-cooker and long roasting recipes. (Ask Moses or Joseph about that one.) Sometimes the longer process of becoming a lot better in the kitchen, and letting God be the Chef de Cuisine, doesn’t seem like the smartest or most efficient move for a ministry. “What, spend long hours in the hot kitchen? Chop vegetables, mince, simmer, sauté, reduce…that could take, well, heck, years! We’re trying to help people, here!”

Well, we might give them something to eat, “really quick,” but how edible is it? Is it healthy or good for them? Will it cause stomach cramps and diarrhea? Will they only be able to serve up the same sort of thing? Will we get to the point of creating and serving the kind of spiritual food that God specializes in–the kind we created with him at his side, just like Abba used to make?

Can we reflect God properly by serving up convenient, ready-made, spiritual fast-food?

I’m doubtful.

What if we tried a sumptuous slow roast?

What if we could mentor (disciple) willing helpers (pilgrims/Jesus followers) and give them a solid, theological, narrative framework (God’s Story) from which to see their reality: God’s present Kingdom, and his Kingdom to come.

What if things marinated, and the juices got savory and settled down deep into the meat, rather than inviting others to dig into some version of pre-fab nosh because, the slow cooker style just won’t suit our time frame and ambitions?

Would we be able to offer something closer to the nature and heart of God the slow cook way?

(For our good and theirs.)

Would we be changed to be more to his likeness in the process of that?

Oh, yes, it’s far messier to prepare, serve, and eat! It takes prep time, long hours of cooking, setting the table nicely. We’ll need plenty of napkins and perhaps a wet washcloth or two. Plus, don’t forget we’re talking about REAL people. There are spills, squirts, and stains. Life is MESSY. Even good relationships are fraught with various difficulties. What about the clean up? A sticky, gooey mess for sure. And maybe dental floss will be handy to keep around. Real meat gets stuck in one’s teeth.

Oh, but there’s this: it’s really satisfying, and tastes fantastic.

Messy, and slow cooked

Add some veggies or a large salad to the slow-cooked entrée you see above, and you have an excellent, tasty, and messy meal many will really enjoy. If the company is good, they might even come back for more.

What do you think about it?

Have you ever been in a situation where it seemed like you had to choose one way or the other?

What happened?

Does the slow-cooker way seem out of reach? (Does this post need a follow up with specifics? Let me know.)

Comments, ideas, responses…

thanks for reading.

Featured Guest Blogger: CHAD ESTES!

I’ve been enjoying Chad’s blog, and social media shout outs for a while now; so I was quite excited, when this busy guy agreed to guest post here. It’s a joy for me to share things with readers here, including people. 

Chad Estes

 

Chad is a legend. Even “Biblical Learning Blog” (at http://www.biblecollege.org)  included his blog, Captain’s Blog, in their list of Top 50 Ecumenical Blogs. So, it’s really an honor to have him here.

When I asked if he would be a guest blogger, Chad mentioned that wanted to share his heart, and I hope you soak in his contribution.

Leave your comments, afterwards, and show him what a polite readership I am fortunate enough to have by visiting his site, and to say “thank you.” 

Chad, Thank you!

I Want You to Want Me

-Chad Estes

        What we learned on the schoolyard playground seems to hold true in life. Those with the mad skills are the ones in demand. Those who can’t keep their eye on the ball, or catch an easy pop fly are picked to play right field and bat at the end of the order. This peer rejection is like the sting of a wasp, and unless you get off the field, you will probably get hurt by the same stinger, over and over again. 

    Adults play this same game. We want to team up with those people who benefit us, and help us win. We do this in business and in social circles. We even do this in church. Those on the outside of our margins–because of divorce, financial status, education levels, or addictive behavior issues, maynot be the first ones invited to our home fellowships. It isn’t their children that we invite to spend the night with our children. 

   But actually my thoughts about rejection aren’t about being picked last; it is the rejection that comes from being picked first. 

What? 

Yes, there is also a rejection issue with being picked first on a team because, more often than not, you are being picked for what you can do instead of who you are.  

     This is acceptable as long as you can keep up with the performance levels, but if your stats ever start to stumble, so will your value to the team. 

     It would be nice if this didn’t happen in Christian circles but unfortunately, it does.

Many churches and ministries recruit to a position based on a person’s perceived contribution value (Do they have good speaking skills? Can they lead a team? Do they agree with my direction? Will they serve this vision?) like it was written on stone tablets. But, when recruiting is all based on performance there will be a day when those skills will slip, or someone, even more qualified will come along. And when our positions are challenged, we may resort to some sort of spiritual steroids to help keep us on the field of play. The bad thing is these unnatural growth hormones actually stunt spiritual development It’s a cheap trick. 

       Today, I had a meeting where I was being recruited because of my ministry skills. But, as I drove home, I realized I was actually feeling the sting of rejection even though I’d been offered a position. The recruiter wasn’t really interested in me as much as she was interested in what I could do for her. She doesn’t really know me, nor does she know my heart. And unfortunately with her priorities all about her vision, she never will take the time to know what my heart is about. And so though it is a heady offer, it is a path that leads to performing, pretending, and pain. 

       My real value is my heart, not my skills. The skills are deteriorating with age. My heart is in the process of being renewed.

                  What I really want out of this life is to be picked by someone to be on their team, or be their friend not, because I’m a good player, or that I fit a niche, but simply because they want to be with me.

How about you?

  • Which rejection hurts you more—the kind from not being included, or the kind from being selected for performance-based reasons?
     
  • What do you suggest are ways to build relationships outside of these judgments and expectations? 

Who do you Love? (this guy's tat proves his love)

Sometimes it’s painfully obvious what a person loves. Take this guy. McDonalds is really important to him. I can’t stress this enough, and by the looks of it, neither can he. The golden arches are embedded on him–for LIFE. How’s that for a Mac Attack? How…er..um..sweet, I guess.

McDees tat

One of the most earth-shattering things I’ve come to comprehend spiritually is that God desires loyalty, and not perfection. For a performance-oriented person like me, this comes as a great relief. I only wish I had known this in my teens and 20s. Now, loyalty doesn’t mean you have to be devoted enough to get a fancy yellow tattoo with clouds and stars on it, but it does mean you’ve decided to hang in close, through thick and thin, for life. Loyalty is actually simple to understand, but it’s rare to find. It is really what we all hope for in true companionship from a spouse or best friend.

What would you have tattooed on you, if anything? (hypothetically)

If you have one, submit your real tattoo photo, or a great idea for one, and maybe I’ll send a nifty goodie your way.

Thanks for stopping by!