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 

American Proud

Americans  love to be Americans, or they are embarrassed about it. I can’t imagine living anywhere else. I can imagine visiting other places, and enjoying it immensely, but I wouldn’t trade my citizenship for anything. This land is my home. Independence Day is a happy day!

Do we take our freedom seriously? Do the picnics, firecrackers, flag shirts, and bbq help us realize what our country is about? What helps you reflect on what America is?

Patriotism is a sharp and slippery knife, though. And here’s why. It can rally us to be our best and most selfless, yet it can also make us blind and foolish. I’m not just talking about creative ways to don the American flag either (see above). I talking about seeing wrongly.

Americans have the terrible tendency to feel entitled because we have freedoms. We get complacent and think life should be easier. Or we may  spread the sentiment that abundance is a right, not a product earned of hard work.

And I can’t help but think that the way our country was birthed is both a blessing and a curse. We told the British empire, “You are NOT the boss of us!” That brazen attitude has dogged us as well, in our country’s history. Americans are generally good people, and quite bullheaded.

We prize independence and resist authority, yet this can shortchange lessons learned only a more formindable way, through community and mature conference. Our rebel roots are all too visible when it comes to finding common ground, and making thoughtful and incremental changes for the better. We long so often for revolution instead. May it not undo us, friends.

On this July 4th day, the thing I am most astonished by is the high cost of freedom through the lives and sacrifice of those who defend us. Our liberty has been paid for by the most precious thing, blood.

Such a high price should give us pause as our hearts fill with the joy and satisfaction (some term “pride”) from living in such an amazing place.

Have a happy celebration time today, friends. Let freedom ring.

What is your favorite aspect of the celebration of Independence Day?

Thorny Crowns

A crown fit for this King, our Sacrifice. Our selfless Savior.

The image and concept of the thorny crown is powerful to me. As heirs of the King, I think our “crowns” are, also, thorns–in this present world. We’re not here for glory in any human sense. Our “success” will look very different. It will be counter-cultural, or even unapparent.

The story of the thorny crown is a provocative one:
Imagine a mighty and good king coming from another place, and he is “welcomed” with the “honor” of huge, piercing barbs smashed down into his head.

This strange irony is such a perfect picture of our rejection of God and his ways. We pick our own way. Absorb the idea that God paid for your foolishness.

The thorny crown is also a most vivid depiction of God’s condescension (click here for and explanation of that precise meaning) to human form to bear our wrongs, and give himself over to our brutality to, in fact, truly redeem it, and pardon it.

Let this crown you see pierce your heart with it’s potency, and the doom that is our rebellion. We need a Savior.

How does the Crown of Thorns affect you?

Of Bullies & 5 Clues that Your Dictatorship is Ending

The face that could launch a thousand mirrors into pieces.

I have to be very honest with all of you today. I’m REALLY struggling.

I’m reeling from some awful news about a man who’s been going to our church. The article is here, but be aware, it makes for horrid reading if you’re a parent, or have a heart for children.

Everyone is heartily nauseated by this series of events, and plenty of people hope he dies, or is tortured, etc. As sick as this makes me, I continue to wonder where redemption and restoration can be found for all involved. What would God have us do? My heart feels broken.

I ask you to stop, right now, and pray for all involved.

Abuses of authority rank at the top of things I loathe, and I’ve seen it in many varieties that I won’t go into right now. I just cannot seem to get a handle on this situation, right now. I couldn’t sleep last night, and I’ve been wondering just how many young people have been hurt by this person, or those like him.

Sadly, the statics are so high, it’s likely there are more abusers that just haven’t been caught, within our fellowship and community–but I pray not. The trouble is, like rape, child molestation is one of the most underreported crimes. The FBI Law Enforcement Bulletin states that only 1-10% are ever disclosed. Please, read that again, and let it sink in.

Kids like my disabled son, and shy children, are prime targets. And hearing about it all, so close to home, makes my blood run cold, and prompts me to action to defend and protect the innocent.

A FEW FAST FACTS that you should know:
• 96% of these types of abusers are male, and the average pedophile knows the victim, and molests 260 victims during their lifetime.

(I’m not trying to condemn a gender, but seriously…what the heck?!)

• All have a fascination with pornography. Please! Read that again. Now, think: how easy is it to get a hold of that, and feed the monster? Rates of abuse are skyrocketing, with no end in site. If you struggle with this issue, and pornography is in your life. Get. help. now.

Pornography is a gateway poison, that leads to a diseased mind and criminality. We need to come forward, and be honest about just how detrimental it is for all sectors of our society.

• The behavior is highly repetitive, to the point of compulsion, rather than resulting from a lack of judgment.

Um. wow.
And here the other fast facts from that source.

For now,

I’m going to channel my energies in this post to opposing and satirizing Dictators, because that’s about all I can do without crying, at the moment. Bullies come in all shapes, sizes, and varieties, but they have the same basic qualities.

My choice today is Muammar Muhammad al-Gaddafi, who’s a bit dim witted. Bullies thrive with creating fear, dictators especially so. When the fear is diminished, hope flourishes; and many will struggle to the death to gain freedom.

Here are 5 Clues Gaddafi could use to extend his life. But, I really hope he never reads this.

1. Realize the importance of shoes. Sure, women, for millennia, have valued shoes, but in the middle east, the bottom of one’s shoe is considered vile. If posters of you are getting whacked with shoes, your time is running out. You are considered lower than dirt, and probably for good reason.

2. Calling Yourself a Martyr Doesn’t seem to hold any sway. When Gaddafi said, “I cannot leave my country, I will die a martyr,” it probably told his opposition he really just “didn’t get it”, right? Or, maybe martyr in Arabic means “fool”.

3. Your Fancy Hats Cease to Charm People. Nothing says coo-coo like a stupid hat worn by a sociopath. This has never been more true. You folks from Reedsville know just what I mean.

4. Your Putting on of Aires is Lamentable. If you pretend you are Lawrence of Arabia and try to imitate his wardrobe, disaster is probably in your future. Really Gaddafi is decades overdue.

5. If your best friends are dictators, the signs look bad. Palling around with other known dictators isn’t just in poor taste, it shows to your “subjects” that you root for the bad guys, which includes yourself. Try to not be retarded, if possible.

Thank you for hanging on with me, and reading this today.

I’m sorry it’s bizarre. Too many sad things all at once I suppose.
-Lisa