Christians Archives - Page 10 of 26 - Lisa Colón DeLay

What Parents of Disabled Children Wish You Knew (Part II)

Doing Church

Did you know that Church and Relationship are synonyms?

This Thursday was the second week in a row that we had a friend come to play with Nathan. Michael is a year ahead of Nathan at his school. Michael, too, has autism and its noticeable in different and similar ways (more on that some other time). He’s an only child, and making friends is tough. It’s not natural for him, but the opportunities are few as well. Together, we’re changing that.

Having him and his mom here felt like ‘doing church’ in the most wonderful of ways. Their visit warmed my heart. “Church,” in this case, means that it’s the first time in much too long where I could tell that I, no we, were living life together. We were enjoying a deeper connection and community in a natural way. In ways we all hope for when we go to church. It feels like coming home with supper waiting for you. It consists of acceptance, warts, and joys, and all. The common was somehow sacred this Thursday.

My hope it that Michael always knows he’s fully accepted and valued here. He is. I’ve made a kind of internal vow for our home to be a safe and loving place for him to be himself. He’s picked up on that. If his mom’s work schedule allows they’ll be over again this Thursday. He says, “We have a meeting.”

I’ll try to put up some video soon, because the way these two boys interact is so hilarious and sweet, and I know you’ll love it.

Make Your Home “church”
Here are some tips, if you’d like to make your home a welcoming environment for a child with autism, so a visit is something to look forward to and enjoy. (Share this information with your children.)

• Structure. Don’t expect that a child visiting will just play. Or do well if there are toys and game around. For kids, with autism anyway, most must learn simple social skills and interactions and adapt through practice. It’s really awkward at first for them. But, it gets figured out through process. You might want to create something, cook something, or play a short game, all together. Doing something with a beginning, middle, and end will add sense to the visit for them. A free play or open-ended style of interactions won’t lend to a high quality visit.

• Time limit. When Michael visits, he likes to stay for 60-75 minutes. He tells us when he wants to go. This is great, but not all kids will know when enough is enough. This can be hard on everyone involved. Plan the get-together with a defined time frame–from the outset. I suggest 45 mites to start (this depends on the child. 30 minutes for a young child might be better). Later you can move to up to 90 minutes. But play for over 2 hours, or trying for an open ended meet up can be counter-productive. A defined time slot things end on a high note, and it’s fairly easy to prepare for the visit.

• Provide goodies. Ahead of time, ask if there are food preferences or allergy issues, and then make sure to offer a snack and beverage. Food is powerful. Use it wisely.

• Ask Questions. Make an effort to interact personally a few times. Ask a “yes” or “no” question, or an “either/or” question, and indicate your interest and acceptance right away, and along the way. Don’t expect anything, just do it. If it falls flat, try again in a little bit. Be Patient. Children are more like gardens than firecrackers. (So cultivate, rather than expect a dazzling display from a brief “matching”.)

• Issues of Eye Contact and Touch We take these social things for granted and generally know what is acceptable with others, and when and where eye contact and touch it is acceptable. Many disabled children do not. They may kiss you all of a sudden, or never even glance at you. Don’t expect them to make eye contact, and don’t try to touch them unless it seems very obvious that they wouldn’t mind. (Realize that for some kids, it feels painful to be touched. Yes, painful. Same goes for eye contact.) That being said, once I’ve built trust, I find kids really appreciate and respond well to a hand on the shoulder or back, or light pressure/touch on the arm, and they warm up to me very quickly. Since sometimes others are afraid to touch them (because they’ve seen big reactions), or because they don’t have friends they interact with closely, they are sort of touch-starved. Acceptable and respectful touch will establish trust. It’s surprising.

• Notice Stuff. Maybe mention that they look good in red, they are wearing cool shoes, or that they’re getting big and strong. See them. Then, say something to let them know. This shows them that they matter to you. Make concrete comments (facts) to them, about them. It gives them a sense of personhood, or place…at the table, if you will.

• Talk to the parents. This might seem obvious, but I’m always surprised at how much the parents of disabled children feel relieved to interact and relax with conversation and company. Encourage this. They don’t often get to “feel human” because of all the stress that goes along with caring for their child. (They’re “going” or “on” all the time. It’s exhausting.)

• Follow Up. Plan ahead for the next time, soon. Set up something that day, or within a week, to have another time together. If we don’t do this, it falls off our radar. Use a pen and mark the calendar. Consistency is key.

Are you “doing church” with anyone? Why or why not?

Verse of Reflection:

^{Matthew 25:44-45}“Then they will reply, ‘Lord, when did we ever see you hungry or thirsty or a stranger or naked or sick or in prison, and not help you?’

“And he will answer, ‘I tell you the truth, when you refused to help the least of these my brothers and sisters, you were refusing to help me.’

Questions, comments, suggestions?

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

9/11; and the Interview & Confessions of a Funeral Director…

View my 3 Part video interview with Caleb here.

The 10th Anniversary of the 9/11 tragedy a week from this Sunday. We will once again see images and recount the horrors of that day, and try in memorial to accept the reality of this world. Most of us don’t encounter death and our own mortality too often. Most of us don’t constantly see suffering, and witness grief and loss.

Please take some time today, or this weekend to remember that the events of 9/11 still bring pain to many. Loved ones are missed, and we can’t gloss over the national tragedy that left a collective hole in our hearts, even ten years later.

This seems a fitting time to discuss an author who is very acquainted with death. It’s his job to be, and his perspective can be very helpful to us. As promised a couple of weeks earlier, the following is my personal interview with blogger and upcoming author Caleb Wilde, a 6th generation Funeral Director, seminary student, husband, and expectant adoptive dad.

My Questions for Caleb:

1. Being a 6th generation funeral director, you have quite a unique vantage point on life, loss, and mortality. How do you think you live life differently than other Christians because of where God has placed you?

Caleb: In traditional religious calendars, the day in-between “Good Friday” and “Easter” is called “Holy Saturday”.  “Holy Saturday” is the day the disciples’ hopes and beliefs were engulfed in death and silence, as they viewed their Messiah’s death without the knowledge of the resurrection.

In some sense, I live the life of Holy Saturday.

As funeral directors, we’re paid by families to be a human shield to death, whereby we make death somewhat easier, less real and more proper.  As this human shield, I’m affected.  I’m affected by the brokenness, by the grief, by the hopelessness I see in faces, by the newly fatherless/motherless children, the tragic deaths and the accidents.

All this has made my personal faith more sensitive to questions of God’s goodness and justice.  It’s not easy for me to understand ideas of “eternal hell”, or ideas of “meticulous divine providence” or even “absolute foreknowledge” or “omnipotence”.

Sometimes I wonder if I’m still a Christian.

2. What do people misunderstand most about your work?

Caleb: We’re a lot like pastors.  Our jobs are really quite similar, except that one is recognized as “ministry” while the other is “business.”  That’s probably the largest misconception … there’s no way funeral directors can meet with grieving families through the most difficult time of their lives and come out on the other side as “business people.”

Everything else is true, though … we are dark and we are odd people.

In ancient times, death practitioners were ostracized from normal society by rule.  Today, we’re partly ostracized from the norm of society by practice.

3. The constant stream of customers (people dying, and their families burying them) can make one grow numb or cold toward the concept and process of death and burial. Do things still surprise you or impact you? What kind of things?

Caleb: There’s something so unnatural about death that (save the very old) it’s difficult to become numb.

4. You’ve probably thought about what you’d want your own funeral to look and sound like. Can you tell us about that?

Caleb: About two years ago, I started taking one minute video clips of myself, so that by the time I’m 70, I should have a montage of age progression videos that can be used for my funeral.

I’ve also talked about recording a message from myself to my family and friends that could be shown at my funeral as the eulogy.  But, by the time I’m ready to die, I figure they’ll have holographic projections, so I’ll wait for that tech until I record my final goodbye.

5. The saddest funeral I ever went to was for a 13 year old boy who took his own life. What have you learned about people during the time of more tragic circumstances that you’ve been a part of?

Caleb: Funerals/death are a perfect storm: you have death, the inheritance money, high emotions and family you might not like too much who are around you all the time.

Funerals intensify people’s real character.  You see the best in people and you see the worst.  The bad people will do horrendous things at funerals, like start fights, curse out their family members over money.  And you can see Jesus in the good ones.

6. Do you find your work mostly depressing, hopeful, profound, mundane, etc.? Would you recommend this vantage point to others?

Caleb: It’s a tough ministry that has little boundaries.  Many funeral homes are also generational, so many of us work with our dads, grandfathers, uncles and cousins, which can make this at-need work that much more difficult to set up healthy boundaries.

Similar to any ministry, I think there should be a passion for death work … a calling of sorts, whereby you know this is what you’re supposed to do.  And being a “calling”, few have witnessed this vantage point.

It’s unique.

7. Do you want to stay in the family business? Why or why not?

Caleb: Next question : )

8. Tell us a bit about how you view suffering, pain, and death from your unique perspective…which probably has a lot to do with the message in your book.

Caleb: I’ve built my understanding of God around suffering, pain and death.  It’s a local theology.  And my understanding of God, suffering, pain and death in light of my faith is the content of my upcoming book, “Confessions of a Funeral Director.”  Hopefully, it will be out in less than a year.  You can get an idea of how death has affected my view of God at my blog, www.calebwilde.com.  My book, though, will contain much more narrative than my blog.

9. What’s your best idea for a Smart Phone app.?

Caleb: I live near Lancaster County (PA), home of the Amish and Mennonites, so there’s a lot of intermarrying in these parts.  Not to mention, most of the towns in the rural areas of Pennsylvania have families that have lived there for centuries, so many of them are related.

I have an idea to partner with Ancestry.com and create an app the lets you bump smart phones with another person and it will tell you how you’re related to them.  My theory is that this will greatly help the evolution of humans by creating a purer gene pool.   The apps name is “Bump it before you Hump it”.

THANK YOU, Caleb, and best wishes on your book. I’m really excited to get a copy.

The working title for Caleb’s book is Confessions of Funeral Director. A bit more on that here.

So, my reader friends, what are you curious about? Ask Caleb your deep, dark, or even silly questions!

Lemonade ¢25. Rewards? Priceless.

Today, my kids made almost $20. Lemonade and Cookies for sale, only ¢25 each.

Okay, I chipped in for the ingredients, and helped them set up, absolutely free, but you get the idea.

The day started off rainy. Not a good day for a lemonade stand. The odds were against them. But, ya know, when a little kid offers you fresh lemonade for a quarter, how do you refuse? I was surprised that some did, but was gladdened that those folks were greatly out-numbered by other types.

First, a friend allowed the kids to set up shop at her business, in a high traffic area. In business, don’t they say something like, “Location. Location. Location.”?

Maybe that’s with real estate.

After that move, even the sprinkles didn’t slow down the customers. Probably more than 80% who walked by, melted visably when they saw the kids with their stand.

The kids really didn’t make (almost) $20. People were generous. They gave a $1, got their cookie and beverage, and said, “Keep the change.” Some gave money to them just because they were there. I parked nearby, but I let the kids do their own business. Attract customers, offer their products, and count the change. I saw how people put in extra effort to support them. It warmed my heart.

There is something very special about being enterprising. There is needed dignity that comes for people when they can make one’s own money, or find their own way, somehow. And yes, generosity makes a big difference too.

Have you been generous enough, lately?

I have this feeling, the same thing is true with spiritual growth, as well. When it comes to spiritual things, do we try to save people the experience of struggle? Growth can take work, and be painful, do we rescue the novices, or give them easy answers? (Pat answers do really help, and they can arrest deeper thinking.) Or do we allow space for mystery, doubt, or the unknown to shape them too.

Can we let pauses in conversation or questions happen, or do we try to fill it up with our “wisdom”? It reminds me of the weird nervous laughter habit people get into sometimes, when they don’t know what to do. They laugh in some odd way, that gets distracting, in its own right.

Do we cuddle or spoon feed, when trying and making a mess will be more helpful; not in the short run, but in the long run.

What are your thoughts?

Wishing I was a Guy (poster envy)

Taking an interlude away from my theology of disability post series, today.

As soon as I saw this awesome poster, I wished I was a guy for about 2 seconds. It’s so goofy and cool at the same time.

There’s probably a good reason why there are no females on this poster. And, no I’m not going to say because Evangelical Christianity is basically a boys club with bonus points for popularity. It’s probably because for some reason we can somehow respect a goofy guy, and still take what he says seriously.

Is there a double standard? Take Tina Fey. She’s obviously brilliant, and she’s also cute, and incredibly funny. But, what if she cranked it up a notch, and started a devotional series, or starting sharing her suggestions on worship music, or maybe exegeting Romans 12. Would her street cred take a dive? Would everyone just start scratching their heads? Maybe that’s a bad example.

Let me try it the other way. What if Beth Moore did a poster spoofing Carol Burnett? Would this help women rely on her more thoroughly while getting out of their pits, or becoming more secure?

What is it about leadership or ministry and gender roles? I’m puzzled.

I may have to test it out personally. A Zena Warrior Princess outfit may in my future.