I have a friend whose mother tells a story of her as a child: when studying for a third grade test using flash cards, my friend strained to think about the answers. Sometimes her mother would have to say the answers out loud, but even then my friend didn’t seem to connect the dots. She’d keep thinking, the answer too far beyond her. Her mother laughs a bit and says, as a child she was a little stupid. This is the story my friend tells herself, that she is stupid.
When she was in junior high and missing school from an illness, she’d beg her mother to return her to class because she needed to get smarter. She loved school. She did not like being stupid.
She is in her twenties now and the stories her parents tell her influence her. She is an over-achiever in the sense that grades matter to her because they reflect who she is. She’s always trying to prove the story wrong, but she also seems to believe that she’ll never be able to prove it wrong. She’ll always be stupid.
The story my father tells me is about when I was three and he was sick in bed with the flu. Everyone was out of the house for the day so I stayed by my father’s side. I didn’t cry or fuss or ask for anything. I just stayed there because he needed me. My father says I have the biggest heart of anyone he knows. The story tells me something about myself. This is who I believe I am.
The stories parents tell their children about them are stories that shape their identity and purpose.
When Mary and Joseph take their son Jesus to Egypt, I imagine them telling him the stories surrounding his birth, the reason they weren’t living in Palestine, and what the angels had each pronounced to them. Before he knew who he was through Scripture, he knew who he was from his parents’ stories.
When a child is disabled like my brother KC, who had a traumatic brain injury at three, the stories my parents tell are stories about a different boy, they are stories about a boy without a disability who doesn’t have seizures, who can run and play sports, who can graduate high school, who can annunciate his words, and speak clearly. They tell stories about a boy with athletic prowess and a stubborn attitude.
An accident like KC’s, however, renders the stories meaningless. With an accident like KC’s he becomes a storyless boy. How do you shape the identity and purpose of a storyless child? This is the tragedy of tragedy; it robs the power of story.
We have a God who gives us this purpose and identity so even when our stories are harmful or meaningless or shameful or stolen, we can become a part of a new story. God’s story. A story of hope, redemption, and meaning.
Ross Gale is a writer and editor from Oregon. His work is featured in Burnside Writers Collective, Antler, Relief Journal, Archipelago, and he contributes to MagicalTeaching.com. He earned his Master of Fine Arts in Creative Writing from Seattle Pacific University. He blogs at rcgale.com where he’s editing the “Bereshit Bara Creativity Series” which asks 13 Creatives to wrestle with questions about what gives them the courage to create.
It’s been many months since I covered this topic, and for a long time things stayed very much the same with my now 12 year old autistic son being a very firm atheist for over a year.
I was committed to see through Nathan’s spiritual journey without pressuring him to believe what I wanted him to. Because I personally have spent so much of my life dedicated to learning about and loving God, this took iron patience and a new kind of faith. Respecting Nathan’s feelings about God and giving him time to wrestle with the concepts lead to a surprising outcome.
For some needed background, I recommend these two previous posts that set the stage for where we are as I have covered this fascinating journey:
(A few more can be found by clicking the Sudden Onset Juvenile Atheism category, or doing a search with those words.)
Now onto the update.
Progress was encouraged by an unlikely source. Many people believe that God (Yahweh) has been erased from public school. This is true in many ways. My son’s social studies textbooks, for instance, never use a capital “G” when using the word God, or any deity. For instance, “People called the Pilgrims came to the New World to worship their god.” [Yes. We live it pluralistic times.]
The truth is, though we may erect boundaries, God has no boundaries. God works in ways we don’t expect, whenever it pleases him to. Sometimes we have to resist the urge to “hold God’s hand” as he works things out. Who then, I wonder, has a problem with faith? The questioning atheist or the anxious Christian?
It was my hope and prayer that God would reveal himself to Nathan and draw Nathan to himself. Then I just had to wait, encourage the searching, and remain peaceful about the rest.
It all started with Social Studies. As Nathan studied world civilizations, he noticed that these were the same people groups spoken of in the Bible. The Egyptians, the Hebrews, the Babylonians, the Assyrians–each one of these groups is recorded in the narratives of the Bible. He learned how all the groups were poly-theistic, and the Hebrews were mono-theistic. In his autistic support class he watched the Dreamworks animated movie The Prince of Egypt (which is rather loose with it’s historicity, I realize). Suddenly the story clicked. What he heard only at church, he also heard at school. This vetted the story for him as actual, rather than “a made up fairy tale and untrue story” as he had previously thought.
Since this realization, Nathan has been more receptive to going to church, listening and sometimes answering questions in Sunday School (we have kept him with us in an adult level class), and singing. He doesn’t lash out in anger when we speak of things of God at home. He’s willing to be content as we pray at meals. His attitude has shifted. People at our church have reached out to Nathan and showed him great kindness and grace. Those relationships have been a boon.
Nathan loves the music at church, and hearing his sweet, pitchy little voice is a precious thing. It’s reminder that his story, and my story are not over. God with us is a work in progress.
Recently, when I thought he was ready to talk about it, I said, “Nathan, I noticed you are singing in church. How do you feel about God now?”
Softly, he said, “Well, I think it’s true. I believe in God now.”
“Did you learn about the Hebrews in school, like you did at church?” I asked.
“Yes. The Egyptians were real, and they had slaves,” he told me.
The story isn’t over. I don’t feel like Nathan has arrived somehow, but now his journey has new hope and new possibilities. He still needs to be nurtured spiritually. Don’t we all? He needs us to model God ways to him, the Fruit of the Spirit. He has never wanted to pray, and my hope is that he finds the comfort that comes with talking to God.
The invisible, but real, is a challenging concept for many of us, and Nathan’s very concrete ways of understanding the world–because of his autism–make it all the more important to be Jesus to him so that the reality of God is experience and learned in regular life. He’s not so different after all.
On the recent topic of Heaven (and soon, Hell) here at the old blog, I must bring up the baffling and sappy rendering of the heaven that we hear about quite a bit in conservative North American Protestantism.
If a boy nearly dies, and then tells you details about heaven exactly as you have taught him, what’s next? I’ll tell you what, a best seller (for people who need a spiritual vitamin B12 shot for their excruciatingly literal translations of biblical passages, and who pay no mind to historical context, linguistic idioms, let alone Hebrew and Greek).
Now, I realize young children tell silly stories. That’s part of their job. The trouble comes when the stories get massaged and coupled with a near-death tragedy to elicit a faith response from the more gullible among us. I do want to think the Burpos are on the up-and-up, but something stinks.
I heard Pastor Burpo and his little boy on a television program. What a cute kid. Some of the story seemed amazing, if not miraculous, but I got a bad whiff of something when Colton (really his dad) detailed heaven as, well, super lame.
People get around on their huge wings. Okay, I hope that’s not how it works. Boobs have been bad enough. The proverbial pearly gates make an appearance. The word “wicked trite” comes to mind, but maybe I’m just too cynical. A blue-eyed Jesus wears a purple sash over his white robe, and rides a giantic rainbow colored horse. Okay, bad wardrobe, and how could the genuine biblical Jesus from the ancient Semitic region possibly possess a double recessive gene for blue eyes? (And don’t say, because both Mary and the Holy Spirit had blue eyes, ’cause I’m not buying it.)
I don’t think Jesus rolls like that. But, I give the kid credit: An elephantine rainbow horse is pretty cool. Of course, I would have to know if it pooped rainbow too. That’s awfully critical info. God (the Father) has a body and sits on the throne, with Gabriel serving as a kind of right hand angel man on his left side, in a smaller throne…as we might expect, right? It all sounds like a bad Star Trek episode. Well, sort of.
Reader reviews often complain that only 3 pages of the book speaks of heaven in any details. But the book has done well. Very well. It spent 52 weeks on the bestseller list, and the family has since produced a children’s picture book, and you guessed it, and movie rights have been purchased by Sony. Pretty sweet deal!
Possible movie title: “Heaven is for Reel: One Boy’s Near-death experience as re-told by his literalistic dad”
When the parents are asked about authenticity, their answers center on referring to the hope the story brings. This begs the question, is the point of the book to create hope in a plenty of people already know what they want heaven to be, instead of a faithful depiction of God (who, by the way, is non corporeal) and the Bible? (Which would be far more confusing.) Both can’t be true.
If you want to read a copy for yourself, and decide, here it is.
But, I offer you some thoughtful reflection on the the topic from arguably the foremost New Testament scholar alive today.
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.’
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
