The problem with interpersonal intimacy is that it diminishes one’s ability to hone self-centeredness. Once others start to matter you sometimes have to take them into consideration. Two Words, people: Lone Wolf.
2. Don’t Get Married/Stay Married
One of the first things you learn, and then continue to learn repeatedly through the years, is that marriage puts your selfishness under a looming, bright, hot spotlight. There is no need to build those skills of negotiating compromise, because unfettered selfishness is crucial to consistently getting what you want.
3. Don’t Be A Good Parent
From birth children are needy. Constantly, one must put his children’s welfare ahead of his own. Even one’s ambitious and preferences routinely are relegated to second priority, or much worse. All this practice of deferring weakens you, so you hardly ever get whatever you want. I’ve seen this happen a ton of times.
4. Don’t Commit to People or Ideals
Believing in something, or being loyal, severely compromises your abilities to get whatever you want. One minute you’re doing something nice for someone, or some cause, and the next minute your going well out of your way. Talk about getting derailed!
5. Don’t Grow Compassionate
As people elicit your pity, or draws you into some sort of endearment, it lights the fuse on the bomb that will eventually explode your efforts to get whatever you want.
If you can avoid all these trappings, you will probably grow expert at getting whatever you want. Of course don’t expect anyone to like it, or like you. As a kind of plague to those in your world, you will continue to seek meaning, but only find it rarely; and even then it will be fleetingly.
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
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.
I have been observing the spiritual journey of my autistic son, Nathan, quite closely for the last three or four weeks. If you haven’t been following the posts about it, here, this is the short version of the backstory:
Nathan, as of a few months ago, professed to not believing in God. This is a change from his former beliefs. He now claims that God, the Bible, and the stories of Christianity are “unbelievable stories,” as he says. It’s fake. A fraud.
The undertaking
To me, it seemed like the perfect time to more closely explore spiritual formation (a.k.a. discipleship) and theology as it pertains to disability. Besides encouraging Nathan in his spiritual formation (no matter how messy or personally unsettling or uncomfortable), I’ve hoped to learn from him, and share my findings. This includes studying on the theology of disability, and documenting Nathan’s time of exploration, with respect for my son’s unique spiritual growth process and experience of the world. For my readers, I’ve hoped to encourage deeper thought and consideration about spiritual growth, and the nature of God.
Where things are now
My attention to Nathan’s beliefs and journey, and the recording of them have reached a blockade. Nathan has expressed that he does not want to be filmed, and wants to not speak about the subject. He’s not ready to go about things this way. I will respect this. His basic sentiment is emotional, and preferential, not logical or given to dialogue. So, I will to put this closer study (at least of him, in a personal way) on hold, until a time comes when it seems productive to pick up with it again. I’ll post about it, occasionally, as insights, changes, or advancements occur. This story is far from over.
Bunny Studies
I got up early this morning and went out on the porch with my coffee to enjoy the unseasonably mild morning weather and take in the sights of the creatures that are neighbors with us. We have a few nests, some very vocal birds, several rabbit families, and a very clever chipmunk who has constructed an elaborate series of tunnels that I suspect could be a secret lair. This morning I saw him enter and leave two different homes, scale a brick chimney, shoot into the roof gutter, and out of sight, maybe to the attic of my neighbor’s home. Clearly, he’s up to something.
I saw a mother rabbit and her bunny nibbling at the dewy clover. They were relaxed in their surroundings, and quite hungry. It made me think of one of my favorite children’s stories: The classic called The Runaway Bunny by Margaret Wise Brown. The bunny hopes to be free from his mother, and tells her all the ways he plans to runaway. The mother rabbit does not tell him stay, but rather shows her steadfast love for him. She accepts his wild heart. She comforts him. For every idea he shares about leaving, she has a plan to love him faithfully and reunite with him. This story was refered to in a theological way profoundly in a film I saw called Wit starring Emma Thompson. It’s a movie that changed me, and help me see God, better.
Wit was adapted from the play W;t, by Margaret Edson. ( In the context of the play, the semicolon refers to the recurring theme of the use of a semicolon versus a comma in one of John Donne’s Holy Sonnets.) Wit won the 1999 Pulitzer Prize for Drama. The main character, Vivan, a college English professor, is dying of ovarian cancer. At the end, Vivan’s admired, former-professor and mentor comes to visit while she is in town for her great-grandson’s birthday. She comforts her and offers to read to her a Donne sonnet. Vivian, scarcely conscious, declines. So instead, Dr Ashford reads from Margaret Wise Brown‘s The Runaway Bunny, which she had bought for her great-grandson. She remarks that it offers a lovely “allegory of the soul”: Wherever the soul tries to hide, God, comfortingly, will find it. (This section was taken from Wikipedia. Read it in full, here.)
God is our Mother Rabbit. For my son, I am a flesh and blood representation of God to him. I am his mother rabbit, and his is my beloved bunny.
I realize, even more thoroughly than I had realized before, that part of growing up includes the professions of and steps toward independence. Perhaps consistent love faithfulness are the most helpful things we can offer children who are not yet mature enough to make their own way in the world.
Thank you for coming along for this leg of the journey. Your thoughts or comments are quite welcome here.
