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 

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.

 

"The Show About Me"…is just re-runs (part 1)

Life *seems* like a “show about you” b/c you are in every scene and every episode.

Deconstructing the “Show about You”

By default our heads are filled with an odd and faulty knowledge/sense that Life is a Show about ourselves. Each person thinks he/she must be the center of the universe (think: reality lived out), until something, or someone interrupts this notion. Living outside this worldview takes practice, increased maturity, and concerted effort. Cultural norms and money makers do not encourage us to turn the channel from “The Show About Me”.

Sounds like a blanket statement, right? It sounds like I’m saying everyone is a dirty, rotten jerk, and that can’t possibly be true?

Okay, let me back it up and just start with a few questions:

Think about these 5 questions as you read them and answer truthfully (to yourself, or if you feel that sharing will help others, leave your results in the comment section).

1. When you wake up in the morning do you think about the upcoming events in your day, or focus on your feelings?

2. Do thoughts of your past, present, or future occupy your time in your day?

3. Do you endeavor to find pleasure and avoid pain?

4. Do you mentally weigh the personal benefit when making decisions and actions?

5. Do you long for people to think well of you, and you make decisions based on this factor?

Okay, maybe you skimmed those questions.

Maybe you don’t want to do a personal inventory. If you want to move on, and this is getting weird or uncomfortable, you’re headed for a rerun. I’ll get to that in a minute.

Before that happens, please, go back, for one more minute and read and consider the 5 questions. After you’re done,consider your results. If you answered “yes” or “sometimes” at all, you are fairly normal, and you are also living your life as the Main Star of your Show. You perceive reality as something that centers around, basically, _________. <—— (that’s a “say your name here” blank.)

So what? you say, doesn’t everyone? What’s the big deal?

Well, friends, it’s only a big deal if you want to feel unstuck….If watching the same re-runs of yourself meeting the same sorts of dead ends and disappoints, and having the same insatiable cravings, growing frustrations, and restricted and delayed growth wears on you, then yes, the deal is starting to head into a biggish area.

Seriously, re-runs are really what you get when the season’s over. No one is working anymore, and the networks hope more rehash won’t be too egregious and lame. After two or three times of the same stuff, we usually want something new, something better.

A whole other Reality is going on, and has been long before you, and will long after you. You may have been skimming on the surface of it, but you have to wake up and realize thoroughly that you are not the Star of the Show, and more importantly, it’s not your Show.

‘Ever seen the movie the Matrix? It’s like that, but with fewer people wearing sunglasses. …. oh never mind, The Matrix explanation is WAY too long and slippery. You’ll think you’re Neo, and we’ll be back where I started.

There’s a bit more to come:

In a few days, Part II of this reflection will get down deeper. Soon, I’ll also offer mental, spiritual, and emotional (maybe some concrete bits) ways many people have truly shifted their view to a more healthy one. We’re just getting the engine started on this vehicle to a new perspective. Let’s stick together–Meet back here soon.

Always feel free to leave your thoughts, experiences, or comments here. (Just after the tags below this post, it’ll say Leave a Comment. Not to be too obvious, and insult you, but….You click that.)

Or answer some questions:

Any guesses who the Star of the Show is?

What do you think Reality looks like with this different worldview/perspective?

And how would it be lived out? (examples, generalities, etc.)

The Man Upstairs Fallacy

I have a body, you have a body, and…..

we’ve gotten used to God (the Father) having one too. “The Man Upstairs” We’ve heard this dysphemism, right?

This almighty person* of the three-in-one Godhead, who is the center of Reality, is the One Jesus invited us to respectfully, personally, and literally, address as “Dad” in our prayers.

Yep, this is probably why the male depictions crop up. And, it’s not surprising that since God has been around for quite a while (okay. That is hyperbole….it’s been forever and ever) that he would be depicted as elderly. There’s the white hair, wrinkles, and, of course mad skillz at wisdom etched in the contours of his face. He’s usually shown as robed (relaxed fit clothing , perhaps), light-skinned (really huge shock, right? Thanks, Rome.), and bearded. There’s a verse about Jesus having the hair in his beard ripped out, but God the Father having a beard, well, maybe he’s just too busy to shave? Did famous Greek Stoics look like this, so it was a jumping off point for artists? God, so many questions…

AND-Yes, curiously the depictions appear very much like Father Christmas (Santa Claus). If you think about that bit for too long, it will start to get creepy; especially with those holiday songs that include lines, “he sees you when your sleeping…” and such.

Here’s the part where I pop the fantasy bubble, like it or not.

God is not a man.

God does not have a body.

“He” isn’t “upstairs”.

That deity in art, and in our minds, looks like a human, and acts as such. It’s human created. The street term sadly, I’m sorry to say, this is, an idol. There, I said it.

More importantly to our spiritual growth, those types of pictures of God are bitty and short-changed. God does not have body parts, or biology to make God one or another gender. Jesus, and others may say “he” for God because it is a term of relationship. It is a gift of grace, goodness, and love toward us (as children) that no human father can accomplish perfectly well. But God can. God displays qualities most often distinctive to both genders respectively, and in perfection and holiness.

God is everywhere. Let’s just try to wrap our brains around this a bit, because we are not at all everywhere. I’ll just repeat it: God is everywhere. This is one big benefit a Spirit Being has, someone like “the man upstairs” is only, well, upstairs. And sometimes downstairs, but not both at the same time. This is where Deism is straight out against the Trinitarian percepts of the Bible. Deism, separates God from his creation: God-The Watchmaker. Distant, Aloof. It’s just dead wrong, because Jesus called him Father, and invited us to do so, too.

To perform an act of God in the flesh (in human form) Perfect God needed a body. So, yes, God incarnated a real human body to heal and redeem humans, body and spirit.

That incarnation: Jesus, the Anointed One.

The Holy Spirit, also a full member of the three-in-one Godhead (not just a pale bird in flight above a placid, pasty, bearded white guy often seen in artistic depictions), is the full power of God that is with us who receive God and Jesus. This Being, works on us to teach us, and transform us into Jesus’ character, what we call “Christ-likeness”.

In a recent survey, Two out of Three members of the Trinity prefer being body-free.

From Jesus, written by John in Chapter 4. Verse 23 “Yet a time is coming and has now come when the true worshipers will worship the Father in spirit and truth, for they are the kind of worshipers the Father seeks. 24God is spirit, and his worshipers must worship in spirit and in truth.”

*(person here does not signify a human person (i.e. human individual), but instead, one with a personality. personality |ˌpərsəˈnalitē|noun ( pl. -ties)1 the combination of characteristics or qualities that form an individual’s distinctive character). In mystic tradition there is some issue there too.

Now it’s your turn.

Like me, have you ever thought of God the Father as a man? Or an old man in the sky?

Or a Being with a body?

How do you image or imagine God?

Which artistic depiction of God (shown above) do you find the strangest, or most fascinating?

All Comments welcome.

thank you.

Grief = loss, separation anxiety

A few insightful excerpts from recent reading:

Grief is the (normal) human emotional response to loss. It is a common part of human experience and may produce growth. We can lose people, places, objects, relationships, and even ideas. Some losses may not be actual, but anticipated, or a perceived loss. (25) Acute grief looks remarkably similar to a classic anxiety attack (same physical symptoms). It is similar to the feelings felt in fear. In grief one fears the loss of self through separation, and experiences separation anxiety. (28)

It is a function of attachment. It can be understood also as our emotions catching up with our reality. (38) The more we can love the more we can grieve. Our abnormal attachments show up (caused by an improper process of  grieving) as permanent emotional detachment or heightened attachment. (30)

R. Scott Sullender, “Grief and Growth: Pastoral Resources for Emotional and Spiritual Growth” Paulist Press, 1985.


Have you lost or grieved anything lately?

Feel free to leave your thoughts or comments about grief or loss.