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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 

Were Adam and Eve Tripped?

That’s right I said Tripped, not Tricked.

ooo, maybe it’s both. Tripped for Treat…

Rachel Held Evans is hosting an interesting dialogue.

She invited Justin Taylor (author of Between Two Worlds blog) to field questions on the doctrine of Calvinism. Justin is a prominent leader in the contemporary Christian Reformed movement, and has many visitors on his popular blog.

The dialogue that ensues when you talk about predestination and free will can get heated; but more than anything, it seem this exchange at Rachel’s blog is more thoughtful and interesting, than negative or abusive. I do encourage you to read more there, and to whet your appetite…Here is an excerpt:

Question for Justin, from Don:
I do not see how Calvinism does not lead to a kind of fatalism, if what will be will be and cannot be changed, why try to change anything?  Just accept your fate.   When I read Calvinists it seems like they keep trying to explain why their faith is NOT like this, even though from an outsider’s perspective it really IS like this.  So any wisdom you can impart here would help me better understand.

From Justin:
Thanks for asking, Don.

The reason for the pushback you’re getting is that the Bible is opposed to “fatalism” (which makes our actions inconsequential for changing things and leads to resignation in the face of such powerlessness) but teaches and presupposes “compatiblism” (that God’s absolute sovereignty is compatible with genuine human freedom and responsibility).

D. A. Carson explains the biblical both/and:

1. God is absolutely sovereign, but his sovereignty never functions in such a way that human responsibility is curtailed, minimized, or mitigated.

2. Human beings are morally responsible creatures—they significantly choose, rebel, obey, believe, defy, make decisions, and so forth, and they are rightly held accountable for such actions; but this characteristic never functions so as to make God absolutely contingent.

I think we see this both/and approach on nearly every page of Scripture. Just a few examples: Gen. 50:19-20; Lev. 20:7-8; 1 Kings 8:46; Isa. 10:5; John 6:37-40; Acts 18:9-10; Phil. 2:12-13; Acts 4:23-31.

Or if you want just one example to examine, take a careful look at how things play out in this story of Paul being shipwrecked.

For more explanation of how genuine means and consequences function in a world of absolute sovereignty, this imaginary conversation may prove helpful.

I have wondered (until the ideas got so heady that it seemed pointless and too distracting from more important things–like Jesus), how the entrance of sin came into the world, if we are to take the Genesis Garden Story seriously. This idea of forbidden fruit and a human “Fall” (The primeval human couple and their disobedience in paradise that lead to a human sin nature for all their posterity (i.e. “us”), etc.) was really a Fall at all. If God planned for those two humans to Fall, wasn’t he then sort of tripping them?

It’s a bit to wrap one’s mind around, but I welcome your thoughts.

Is Repetition Unholy? -Thom Turner

Thom’s post (re-posted here) gave my heart a needed pause and conviction on my impatience. I hope you find it as much of a blessing as I did.

Thank you Thom for letting me repost it here. Your poems and thoughts are Spirit-filled. (Readers and friends, I encourage you to check out Thom’s EveryDay Liturgy blog, soon!)

Please feel encouraged to leave comments below if these thoughts somehow touched your heart, or share whatever the Holy Spirit brings to your heart/mind.

Enjoy your weekend everyone!
Love and blessings,
-Lisa

Is Repetition Unholy?

-By Thom Turner (Everyday Liturgy)

08 Sep 2011 12:30 PM PDT

I remember the first time I heard the bizarre statement that repetition took away from worship. It was, not surprisingly, in a Baptist church. I had, probably naively, asked why the church didn’t practice communion more often. The response was that repetition made spiritual practice meaningless and unimportant: “If you do something too much it no longer has any value, so we only practice communion every now and then to keep it fresh and exciting.”

That is an American response.

That is the response of a person who was raised on instant gratification.

That is the response of a person who expects new, exciting forms of entertainment.

That is the response of a person who values change over consistency.

That is the response of a person who values feeling more than commitment.

Most importantly, that is not a Christian response.

The Christian response is that our spirituality and worship are everyday, every hour, every minute happenings. We are admonished to take communion each time we gather, to pray without ceasing, to pray in a certain way, to sing songs, confess sins, listen to the reading of Scripture, meditate, teach, learn. These are all things we repeat. Unceasingly.

Repetition is not unholy. It is a deep, elongated experience that should make us into disciples.

Repetition in worship is just like when you tell a family member you love them.

Repetition in worship is just like when you take a drink of water.

Repetition in worship is just like when you eat breakfast, lunch and dinner.

Repetition in worship is just like when you go to sleep.

Repetition in worship is just like when you go to work.

Repetition in worship is just like when you turn on a light so that you can see clearly.

Yes, I can readily admit that we can stumble into laziness or unfocused action in repetition, but that is not the fault of the spiritual practice, just as much as it is love’s fault when a spouse just mumbles the words “I love you” without any thought or care. We need to learn to embrace repetition in worship, the normalcy and comfort of sameness in worship, just like we accept this normalcy and comfort of routine in the rest of our lives.

I repeat: we need to learn to embrace repetition in worship. And when we do, we will become aware of the slow and steady movement of the Spirit in every aspect of our life. When we do, we will become aware of how God is steadily working on our holiness: through repetition.

Capacitarianism: Final Gender Post in Series

Post IV
Capacitarianism” (Transcending the worn out terms “egalitarian” & “complementation”)

I’m drawing this proposal series on gender and the church to a final post. Well, final for now. (I’ll leave room for a sequel series, just in case…)

Plenty of other recognizable names will be shedding light on this topic in the weeks and months to come. Let’s hear if they have anything new to add.

Among all this discussion, I do realize not everybody will be encouraged to push toward a better understanding of gender as it relates to God’s plan of redemption. Plenty of times we talk, and we talk, but we don’t move our positions. We just dig in.

Though many times we learn too little, something much worse can happen too: Talk stays talk.

In the end, talk of men or of angels doesn’t about to anything but noise, if it cannot be a reality of love, enacted. Action, far more than arguments or dialogue is what transforms.

I have no doubts that these issues about equality, roles, church, gender, and what-have-you will be wrestled by laity, theologians, and debaters…ad nauseum. I hope it’s been clear that my point in these four posts was to cast the topic in a new light, and see if we could think bigger than our current terms afford us. Either way, like life, it is all fleeting…just as King Solomon proposed.

For now, I will leave you with these following 5 offerings below, (and I welcome your own additions, or other comments, in the comments section below).

The 5
As we encounter these gender-themed topics and the church; and as we continue dialogue here, or elsewhere, please take these 5 suggestions into consideration.

1. Don’t use the Bible as a weapon. A fine line will be crossed when we use Bible verses as “backing” for our position, and claim we are “being Biblical”, while at the same time cherry picking words and phrases that support what we’ve already been told, or are wont to personally believe.
The Brass Tacks are this: Interpretation of the Bible must well mirror the nature, attributes, and over plan of redemption that is God’s. One’s view on gender must articulate God’s Story.

…Some of you may say the Bible IS a weapon! Yes, the Bible is called the “Sword” of the Spirit, but first let that sharp thing pierce (convict) your own heart, or protect your heart from Evil. Please don’t go chopping away wildly and cut off ears, or other things…

2. Don’t assume or concede that just the two main positions are the only viable stances in contemporary times (i.e. egalitarian and complementation).

I, for one, will not be compliant to this tact, nor will I adopt either view fully as I dialogue, especially as a prerequisite to having a conversation on the topic. 

3. Admit the “answer/s” about gender, and church roles, and how this plays out in typical Kingdom living are hard to find, not cut and dry. I don’t think we can learn from each other, or from God, if we have it all figured out.

4. Don’t let old and worn out terms and ideas corner you, or make you give up on what God has called you to do. God seems to call us to do things that swim upstream, and go against convention or tradition. Make the love of God, and devotion to God your aim.

5. Find common ground. As others have wisely said in the comments sections that egalitarians, complementarians, and the rest of us, (usually) want to please God, live for him, respect the Bible, and enact grace. If we take time to find common ground, we will realize there is much more the same, especially in our intentions, than we first realized.

The Word of God encourages us to live in harmony with each other, and have unity in the bond of peace. This is far harder to dispute than any gender-related position! If you error, do it on the Love (not division) side of things.

Peace to you.
-Lisa 

PS (To read the other 3 posts on this topic, start here or here.) Your contributions to the topic are quite welcome.