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 

Truth Happens (The intersection of accuracy and beauty)

“Art tells the truth.” -me

I haven’t been able to put my finger solidly down on the reason why I haven’t enjoyed the artwork of Thomas Kinkade, the self-described “painter of light.” Until now.
Kinkade + Disney

If you like his work, please accept my apology. It could just be a matter of personal taste, but my dislike centers on something that maybe he has created very unintentionally. Yet, on inspection of his many works, I find something very untrue about it. Something saccharine. Something short of Truth. Do you?

This brings me to a great commentary on truth. As NT Wright says, “Truth happens”. It is not a matter of whether I speak correctly of something factual. “The table is made of wood,” for instance. In the case of corresponding evidence, for an authentic reality, we may speak what is true. But most of life doesn’t flesh out that way. Really, none of the biggest questions do.

So, perhaps, Truth is a verb.

I appreciated N. T. Wright’s thoughts on beauty and truth (see short video). I’d like to hear your thoughts about it.

What Rapture? How American End-Times Invention subverts…

Mass chaos as Christians are sucked into the sky.

Loud and sustained sounds used to send me into shutters with shivers up my spine. Once in a while they still do, especially if they resemble a brass instrument. Since I live near a firehouse, my overall sensitivity has decreased. How odd…Why the fright, you may ask?

Two words:

Trumpet Blasts

(signaling the Rapture)

The 1980s Mark IV series of fundamentalist apocalypse films are to blame.
The titles are as follows:
1. A Thief in the Night
2. A Distant Thunder
3. Image of the Beast
4. Prodigal Planet

Have you seen any of them? $99 will buy you all 4 here. Horrible stuff.

In more recent times, the Christian mega hit book series by Tim LaHaye, and subsequent movie trilogy based on his books Left Behind, claims to portray the Biblical predicts in the so-called Last Times.

All three movies will cost you just under $20 here. The extra bonus, if you grew up in the 1980s, is seeing teen heartthrob Kirk Cameron acting again.

(I really thought I’d married him one day. In middle school, I wrote him 2 fan letters and everything. Pffft, his LOSS!)


 

Here’s the real problem:

What many, if not most, of us don’t realize is how recent and uniquely North American this pseudo-theology is. It’s popular just in North Amercia, and hardly heard of nor accepted elsewhere in Christianity, globally, let alone historically.

Here is a quick rundown of it. It’s recent doctrinal misappropriation: The Rapture and Second Coming stuff. (Spoiler Alert: It started “coming to life” rather recently…in the 1700s).

I deeply appreciate NT Wright’s comments called Farewell to the Rapture. It’s a short read.

He shows how Paul’s language colorfully used social, religious, and political metaphors of the particular time. Rapture advocates have wildly attributed his intriguing language to extremely specific and literal occurrences and world events–present and future.

Regarding eschatology (the study of end times), Wright says,

“Understanding what will happen [in the future] requires a far more sophisticated cosmology than the one in which “heaven” is somewhere up there in our universe, rather than in a different dimension, a different space-time, altogether.”

Basically, this invention which is American-flavored End-Times theological subverts God’s current work of redemption in us. It obscures God’s nature, as well, and what God is “up to.”

The Harold Camping rapture nonsense brings this misunderstanding into glaring and ghastly light. How were his followers helped by his understanding of God? What will they do now that they haven’t raptured? Sad.

Even the attempts to map out the book of Revelation on any sort of timeline are terribly misguided. The book reads like an acid trip. Revelation barely made it into the Biblical canon. Martin Luther, who wanted the Bible in the hands of all Christian laity, said it should be included in the canon, but only if it was never used as teaching material.

Nevertheless, I’m quite fond of the Revelation 22:17. It sums it all up for me! For more encouragement, try my friend Ed’s related post here.

How do you view the Book of Revelation?

The prime focus for believers should be the event and meaning of the cross, then and forever. It should be about how this truth of God’s work and grace becomes incarnational reality in our everyday lives. Let it never be degraded to who will get sucked into the sky one day, and when.

[subscribe2]

Lenten Reflection: Freedom


John 8:31-36 (New Living Translation)

31 Jesus said to the people who believed in him, “You are truly my disciples if you remain faithful to my teachings. 32 And you will know the truth, and the truth will set you free.”33 “But we are descendants of Abraham,” they said. “We have never been slaves to anyone. What do you mean, ‘You will be set free’?”34 Jesus replied, “I tell you the truth, everyone who sins is a slave of sin. 35 A slave is not a permanent member of the family, but a son is part of the family forever. 36 So if the Son sets you free, you are truly free.

The season of Lent is especially helpful for calling our cravings (desires and temptations), and sin (missing the mark) into question. When we do not have the mind of God, we sin. We enact a way opposed to God, and his nature. It is sin that enslaves us. We become captive to corrupt desires, deeds, words, and thoughts. Sin is our Master, and we remain in chains.

What ungodly things are your master? The Son has made you free, and you are free indeed. If you remain faithful to God’s teachings, you will not be fooled by sinful things, and held in bondage.

Consider you sin, and your sinfulness. Confess it and Relinquish it. You have been set free! Live in that freedom.

Response Question: What has God freed you from?

Quiz/Survey: Can your soul fit into a mailbox?

mailboxWelcome to the most popular survey at this blog!

Can your soul fit into a mailbox? Take this Survey to Find Out!

(Is this is silly question? Yes. Try to have some fun, okay?)

Directions: Answer these simple questions, True or False, add up your score, and I’ll give you some instructions at the end.

1. T or F On cold, windy days, sometimes it feels like the wind goes “right through you”.

2. T or F Cats and dogs bother you when you don’t want them to.

3. T or F The wrong mail has been delivered to your home.

4. T or F This wrong mail to your home stuff has happened more than once.

5. T or F Sometimes you feel lighter in the morning time.

6. T or F After a hair cut, sometimes you miss your hair.

7. T or F You feel like you’d like to “go home” sometimes, even though you might be at your own house when you think that.

8. T or F Babies and crazy people sometimes stare at you…knowingly.

9. T or F Your fear of heights has gotten worse over the years.

10. T or F You don’t wear out shoes like you did ten years ago.

Now, give yourself 5 points for every T, and 10 points for every F. Add them up.

If you scored 50-100, your soul is pretty hard to define, size and shape-wise, but I won’t lie to you, you have one. It might fit into a mailbox.

If you scored over 100, you have a soul, and a mailbox is no place to put it. Use your mailbox for letters, and small packages. Take larger packages directly to the post office, and take your soul and spirit with you.

We may not think about our spirits and souls in an everyday way, but if we hold our breath for 20 minutes, a lot of questions get answered. The life breath goes right out of us. The Greek word for spirit is literally “breath of life.” It seems there are a lot of things that aren’t incredibly easy to define. If we think we can use the Bible as a glossary, we’ll find out, there isn’t a definition of the word “soul,” “spirit,” like there would be in a glossary, which would clean up the confusion, nice and tidy-like. But, most of us realize our life experience isn’t just surface level. Are we simply machines that live a few decades, and then die? That’s the harder thing to believe, especially when we take in Beauty that is all around us.

Things like Beauty, Hope, Love, Innocence, and such, are *Ideals* that point deeper, or further out, than we can clearly perceive, or could ever accurately measure. Knowing God (who is infinite and personal) works the same way. So does a life that includes an acknowledgment of soul and spirit, and a journey toward the heart of God who is “Other,” the Source of Good, and the best of the ideals written on our hearts.

Thanks for playing.

I hope you stay, read some posts or try the other self-tests, and leave comments where you’d like to.

-Lisa