Eps. 227 | Guest, Micha Boyett: Blessed are the Rest of Us

It was great to speak with Micha for the podcast. I hope you enjoy our conversation and head over to the extras page to learn more.

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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?

God and Disability

Nathan, like many who experience Autism, often doesn't like having his picture taken. (Later, he saw this photo, and thought it was funny.)

Currently I am taking a rather fascinating class delving into the topic of God and Suffering, called “The Theology of Suffering.” For my final project, I am taking on a specific topic under that category–Disability.

I’m endeavoring to uncover questions like, “Why does God allow children, and adults, to suffer with disabilities?” “Is disability part of God’s plan, or part of what’s broken and wrong in the world?” “What place do the “disabled” have in “God’s Story”?” “How can care-givers of those with disabilities view this type of suffering in light of what God has done, what he is doing, and what he will do?” And some other questions.

In 2001, when my son started to struggle with a rather severe case of regressive autism, I wondered not just what was going on with him, but why? What was the point? I have to say, it all seemed like a mistake. My faith was shaken; not because I thought I should be able to have the child of my dreams, (this was a sad part of it too,) but because seeing my child suffer so badly made me question what God was really like. After a period of grieving, I had to find out more.

Nathan made a paper Nativity set at Christmas

Our son went from meeting all his developmental milestones ahead of time (rolling over, sitting, walking, talking), to not even answering to his own name for days on end, not reacting to pain in any normal way, not speaking to us, and not even calling us “Mommy” and “Daddy” any longer. I didn’t know where to turn, on many levels, and I wondered why God would want to kill me by breaking my heart, day-by-day, as my son sank into frustration, fear, pain, and despair. At times I felt hopeless.

We don’t live near family, and I’d like to say our church, and other Christians, were helpful, but almost no one reached out in any way that was truly or consistently supportive, or meaningful. Experiencing disability and struggle has a way of isolating us, and creating more hopelessness to wade through.

Instead, the opposite can be true. The disabled have much to teach us about hospitality, a characteristic of God, both individually and as a community.

The primary text I’m reading for my research is Vulnerable Communion: A Theology of Disability and Hospitality by Thomas E. Reynolds. What an interesting book!

Vulnerable Communion: A Theology of Disability and Hospitality -Thomas E. Reynolds

Here are a few nuggets I’ve gathered:

• The “disabled” are a picture of human weakness and vulnerability, from which we can learn about the human condition, and God himself. They teach us about the goal of Reliance, versus our misguided and typical goal of “independence.”

• These people are at the center of God’s love, and made in God’s image, they display attributes of God. They help us to see the true nature of God–One who made himself weaker and vulnerable, and still is vulnerable to us. (This vulnerability is epitomized in the historical event, and saving action of Christ’s sacrifice on the Cross at Calvary.)

• The “disabled” give us the opportunity to learn, practice, and experience hospitality, and “do for God” (Matt: 25:40 “And the King will say, ‘I tell you the truth, when you did it to one of the least of these my brothers and sisters, you were doing it to me!”)

This is a topic close to my heart. Uncovering more about it has helped me to not just understand my son, and his struggles better, but to understand God, his character, and his intentions.

Now I’m wondering, “Is it time to write a book on this?”

Please leave your thoughts on this topic, or comment in any way.

May God bless your heart,