I’m working into the wee hours every night to finish up the manuscript for my book, Of Such is the Kingdom: A Practical Theology of Disability. Sometimes when I’m writing along, doling out advice, I realize that there’s an urgent need for resources to help my fellow Christians pray. Tonight, when I wrote about matching prayers, I thought, now that’s something I can help with right now! For anyone with communication challenges, with a need to pray without speaking, who might have trouble with working memory, who might need to pray with their hands, but who does not have a visual impairment (these images are not high-contrast friendly or readable by touch), this prayer offers an easy-to-repeat sequence.

So here it is. A Board Maker symbol version of The Jesus Prayer. A few explanations if you are not familiar with the way this pictoral language works: The cloud with light is the Board Maker symbol for God, added to the symbol for “son”. The symbol for “have mercy” is a combination of the symbols for “help” and “love.” The outline of a circle on top of the line means, “on,” and the symbol with it means “me.” Because “sinner” doesn’t translate into this pictoral language, I have stopped with the shorter version of the prayer.

To use this prayer, print out the paper and cut along the dotted line. Cut out the images in the lower half to match with the images on the top of the page. You can laminate the cards and page, use velcro, or leave as-is.

Download the PDF here: Jesus Prayer Match

Follow this blog to receive updates including more free printables and resources for prayer for autistic Orthodox Christians.

Categories: autism, christian, concrete thinking, discernment, faith, free giveaway, prayer, special needs child, spiritual formation

Tagged: asd, autism, autistic prayer, brain injury, communication challenge, Down Syndrome, free download, matching, printable, spd, working memory deficit

Non-Verbal Prayer 3 Ways

Summer Kinard

Posted on May 4, 2019

Last week, I realized that my book needed a chapter dedicated to non-verbal prayer. After I reviews some talks I’ve had with Orthodox people and families living with disabilities, it became clear to me that this is a resource that’s desperately needed. I’ve already offered a non-verbal prayer card kit on this site, which you can find HERE and a tutorial on praying with a prayer silk HERE. But those are only two of dozens of ways to pray without words.

Because some of my children have spent years being non-verbal or are still emerging in their verbal abilities, and because I also prefer to pray in silence when my heart is full, I have a lot of experience with non-verbal prayer. Even so, I didn’t realize how many ways we pray without words until I brought up the idea of including non-verbal prayers in my book to my sister who served for many years as a religious education director of Catholic parishes. She and I started naming our favorite ways to pray without words. We came up with so many ideas that we realized we’d probably need to write other books just to tell everyone about the practices!

My book – Of Such is the Kingdom: A Practical Theology of Disability – that’s coming out this fall from Ancient Faith Publications will have more examples, but for now, I offer these three ways to help you pray when you don’t have words.

Cast Your Cares upon the Lord by placing photos, names, or objects under a cross or a holy icon. I’ve sometimes written names or prayer requests on post-it notes and placed them next to a holy icon or under a cross on the wall or a table. Many people I know bring up people they love in prayer by tucking photos of loved ones into the spaces under their holy icons or crosses. The action of bringing objects, images, or names to God and leaving them in a place will help you to develop the habit of trusting God.
Walk With Jesus by moving around the room to the sound of sacred music. You can play liturgical music or a favorite hymn or listen to the music in your head if you are so musically inclined. The key is to walk, or to move in rhythm as well as you can, to the music. If you cannot hear, this exercise can be done to the feeling of bass from lively or louder hymn settings or to the rhythm of a sound visualizer. By letting the music speak for you, you can respond with your body in this type of prayer to help you remember that God is with you, always at your right hand, always guiding you along like a shepherd.
He’s Got the Whole World In His Hands. Print out this map from the PDF file below (includes both the multi-saint and Jesus-only cut out versions). Simply cut along the dotted line, cut out the icons of saints or the Lord, and place the icons on the places on the map in order to pray for them. You can also print out a map of your local community and pray for your city or your friends and neighbors using the icon cut-outs. This visual and movement-based prayer helps you see that the world is looked after by God.

St.Nicholas for those at sea, Holy Theotokos (Blessed Virgin Mary) , Archangel Michael, the Lord, Sts. Cosmas and Damian the Holy Unmercenaries for the sick, St. John the Baptist, The Dormition (Assumption) of the Theotokos (Virgin Mary)

Pray For Us Prayer Map High Quality PDF for Printing

Try some of these methods of praying this week for yourself and any nonverbal family members, and remember that God is with you and loves you.

What is your favorite way to pray without words? Continue the conversation in the comments. Please share this blog post so others can find it, too.

I’m wrapping up the writing for my forthcoming book this month, but you can find more of my Special Needs Resources including free printables here and on the Of Such is the Kingdom site. Make sure to follow this blog to keep up with posts. In June, I’ll be speaking at the sold out Ancient Faith Writing and Podcasting Conference. I’ll share more about the conference and how to book me as a speaker later this summer.

Categories: advice, autism, christian, concrete thinking, discernment, faith, instruction manual for my family, life lessons, prayer, special needs child, spiritual formation, traditions

Tagged: accessible prayer, autism, Christian, free printables, holy, how to, nonverbal, prayer, prayer for people who can't talk, praying when you're out of words, quiet, speech delay, whole body

The Anti-Gaslighting Light

Summer Kinard

Posted on May 1, 2019

We Orthodox Christians are rowdy this week with Paschal joy. We just put in a collective 7 weeks of repentance until the joy of the Resurrection made mercy seem like the better option than anything. The prayers tell us to rejoice even with those who do not love us, because we have found a joy that raises us out of everything lower: death, hell, even pettiness!

There is one exchange that particularly shoos off the usual sarcasm we often experience online and from insecure persons. It’s going around in every language and home and online gathering place. Perhaps you have seen it.

Christ is Risen!

Truly He is Risen!

When I experience mercy, I have joy, sure, and it’s quickly followed by a “What just happened?” response. I feel a kinship with all those people in the Gospels who witnessed amazing miracles and were still puzzled by who Jesus was. I can almost hear them asking, “Like, did y’all just see what I saw?”

Back then, there were plenty of people who wanted to tidy God back into ideas so they didn’t have to deal with the way God shuffled the human pecking order. Well, sure, He healed that woman, but did you ever stop to think about why she was going around touching people in her condition? I can almost hear the Pharisees sucking their teeth as they watched all the people they were better than walk away healed and joyful after they met Jesus.

I can do the same thing. I can watch a miracle or two and wonder if I can handle the fallout from God doing that sort of thing. I can count my blessings and sigh, “That’s enough for now” when I run out of fingers and toes. I can wince as I see God drawing So and So near, when it would be easier for me to ignore So and So if they just stayed mean. But there’s a good reason to stop trying to be sophisticated and ornery and to start being glad. The rankings of humans that let me compare myself to others were built around the doors to death and hell. And Christ has broken those doors.

Christ is Risen from the dead, by death trampling down upon death, and to those in the tombs He is granting life.

He has made us ministers of reconciliation. But once we take that song and that light of mercy out into the world, we start to knock against the hardness of the world and of our own broken hearts. We need each other to keep the light alive. So we remember the truth that sets us free, reminding each other of the truth over and over again the way that people light fires by clacking flint and steel.

Christ is Risen! But what about violence and hatred and pettiness and perversions and competition and misunderstanding and addiction and poverty and crime and war and pollution and illness and corruption and pain and death?

Truly He is Risen! And everything is worked back towards the good and mercy is over all of God’s works and there is nothing to stop grace entering the soul.

Christ is Risen! But what about loneliness and despair and emptiness and vanity and vainglory and selfishness and greed and people dying before their time and storms and extinctions?

Truly He is Risen! And nothing can separate us from the love of God in Christ Jesus our Lord.

This world is not easier if you know where you’re going. The trials are harder for the strong. But when you know the truth, you are set free, like Christ was free among the dead. You can move forward with courage and vision and confidence and hope and even the greatest gift of love. There will be a thousand voices trying to tamp down the light of Christ, but for these 40 days, we shield each other against the effects of their gaslighting.

Christ is Risen!

Truly He is Risen.

Christ is Risen!

Truly He is Risen!

These words crack against the lies of the world like flint making fire from stone. With these words we keep the light of truth alive against the gaslighting of this broken age.

Christ is Risen!

Truly He is Risen!

This post is part of a new project I am starting on reclaiming the conversion experience from popular culture. Conversion has come to be understood as a marketing term instead of a spiritual one. People are being sold a bill of goods in many spheres of life, all to assuage their isolation and loneliness. But conversion is a normal part of a life of faith. Let’s reclaim it so that we can rejoice that if the Son has set you free, you are free indeed. Join the conversation in the comments.

Categories: christian, conversion experience project, discernment, encouragement, faith, Liturgical Season, spiritual formation

Tagged: clarity, gaslighting, Pascha, Paschal greeting, the light of Christ, validation

Faith Like a Coin

Summer Kinard

Posted on April 30, 2019

I used to get eyeroll headaches from the faith writing trope that goes like this: I used to go to religious gatherings and follow a religion, but I realized that I don’t like groups of people much and that it’s more convenient for me to think about God on my own, plus I like to hike…#spiritualnotreligious. My least favorite form of this writing is the burned out preacher/leader version that pretends that they got better at life by losing their faith.

Why do I not buy these narratives?

Introverts get burned out. They didn’t invent the burnout, and avoiding religious groups isn’t really the cure. The cure is alone time.
Of course everyone experiences God in nature! You’re supposed to, because God made the world.
Faith was meant to get lost.

Today I’m going to talk about that third reason: Faith was meant to get lost, or rather, we’re supposed to lose sight of it as we grow. Part of growing is discarding the lesser goods that we used to make do when we were getting to where we could see better, know better, and do better.

If the kingdom of God is like a woman searching for one lost coin out of ten, our faith is like that, too. We sometimes have to search and clean and rearrange until we find what we have lost. That doesn’t mean that the treasure is taken from us, but that we know that the coin is there to be found and that it’s worth finding.

Sometimes we can’t find our faith because it grows past our expectations of it. We go back year after year looking for an acorn that has grown into a tree over our heads. Finding that tree is a reckoning, a recognition that God gives abundantly according to His nature, not in regard to how small-minded we can be.

You may think I’m making light of faith crises, which faith losers also didn’t invent by the way –they aren’t new or unique, nor do they make you special or smarter than everyone else– but hear me out. The American evangelical narrative of a conversion experience is wrong. We’re meant to have ongoing conversions. Part of that process is losing faith and (important!) finding it.

Why is it good and normal for us to become disillusioned with our faith? Because faith always seeks what is real. It’s the substance, the real stuff, of things hoped for, the evidence of things not seen. If you are believing in a beautiful fantasy, it’s good for you to stop. That way you can believe in the real stuff instead.

Let me tell you about hope. Hope is waiting. That’s not something we like to hear, but it’s something we need to hear, especially when we’re going through hard times. The biblical poetry goes, “Why are you cast down, o my soul, and why are you disquieted within me? Hope thou in God, for I shall again praise Him, my help and my God,” and again, “I believe that I shall see the good of the Lord in the land of the living. Wait, my soul, on the Lord,” and again “My soul waits on the Lord.”

Hope is not only waiting. It’s waiting with an expectation that God is there.

Sometimes, maybe most of the time, we ignore God. Prayer is waiting on God until we hear Him listening, until we are listening for Him.

This listening makes all the difference in a faith crisis. If you believe that you will find something real, you train a lot more energy and attention on finding it, like a woman looking for a precious lost coin or a shepherd searching everywhere for a lost sheep.

If the challenge to faith is that someone in your family has a disability, you might be setting tests for faith that don’t have anything to do with the reality with God that you crave. Maybe you started looking for the acorn of total physical healing, but you are missing the tree of life growing over your head. Maybe you were looking for the coin but never moved over the furniture so the wheelchair could fit at the table. Maybe the coin is right there in front of you, behind the dusty icon you no longer see, behind the books too heavy to lift these days when you think there’s no use in trying to teach this one. Maybe you left it under a pile of hopes discarded like off-season clothes in a corner. Go and look for it. This discomfort is only the pressure of a new beginning.

Categories: conversion experience project, discernment, faith, spiritual formation, Uncategorized

Tagged: faith crises, how to find faith again, lost faith, reclaiming the conversion experience, special needs parenting

We are Not Alone

Summer Kinard

Posted on April 30, 2019

I sit in front of an icon of Christ the Bridegroom. In the reflection on the glass that covers the icon, my small son’s art project of the healing of the man born blind stares at me with eyes still muddy. My face, and Christ’s face, and the mud-eyed man’s face, shine in a circle. We are part of a quiet sect of hopers – you know it, too? You know Him, too? You know me, too? – who have ducked under cover like seeds about to burst up into the light. I see Him and him and me when I try to put a mystery into words.

We are not alone.

That line has been twisted into so many meanings of late: You are not alone. You’re one of us now. Accept our terms, or be alone again. We’re not alone. Every terror you feared is real and is bigger than you. Be afraid with us, because it’s the only way to not be alone in the frightening world. You’re not alone. Here is the product I will sell you so you can show everyone that you’re like them.

But the worst way that truth has been twisted is in the lie that our suffering sets us apart from everyone, from God. The lie that seems nice at first comes to us: God will come to be with you in your suffering.

What’s wrong with that? Shouldn’t God enter our suffering?

What’s wrong is that it starts with a lie. We were never alone to start with. God became human so we might know Him, not because He wasn’t around before. We enter Christ’s suffering, not the other way around. He was always with us, and when we suffer, we are only tasting a little of His suffering.

In baptism, we imitate the suffering of Christ, but we receive the real salvation, not an imitation grace.

This matters to the man born blind, who did not receive his eyes from a God who became blind to enter his suffering but from a God who restored His own creation and opened to the man the path of life along with opening his eyes. This matters to me, because I have not been alone even when I was in despair or in the shadow of death or beaten or harmed in other ways. God was already there, is already here, is already wherever I go, seeking me, calling me, loving me, inviting me to enter into the sufferings of Christ so that I can be healed. With His stripes we are healed.

Maybe you have been looking for God. Maybe people have told you to interpret the discomfort in your life as an opportunity to join them to assuage the loneliness and isolation you feel. Maybe they offer you solutions – products, surgeries, group memberships, supplements, a thousand expensive options, street credit, victim status, moral high ground -that they promise will take away the pain of isolation you feel. But we have a word for that longing that fits better than the hollow hopes for sale. It’s homesickness. You feel it because you are already walking along beside the God you seek. You want it to be harder, to be more dramatic, but He’s already there. You only have to reach out, to breathe out, to seek for a moment with your whole heart.

We are not alone.

Categories: conversion experience project, discernment

Tagged: God, healing, homesickness, lonely, longing, reclaiming the conversion experience, suffering, we are not alone, why

Accessible Prayer Corner Tutorial

Summer Kinard

Posted on March 28, 2019

The most effective and lasting way to teach is through how we arrange and prioritize spaces.

The ancients knew this well, and they learned vast amounts of story, scriptures, and sermons by associating ideas with places that were familiar to them. In daily life, our movements around our homes, classrooms, work spaces, and churches teach us just as much as the lessons we might study in those places.

This human way of learning in three dimensions is a wonderful asset for sharing the faith with children with disabilities, impairments, and neurodivergences. Unlike the speech or reading or heavily language-based ways of teaching that fail to engage the attention or enable the interaction of children with disabilities, this prayer corner is a meaningful way to build the practice of hoping in God.

An accessible prayer corner or wall teaches with space.

Here are some reasons it reaches everyone:

The prayer wall is the primary focal point of the room. When you enter the room, you see it on the far side of the room. It is large and beautiful, tactile, and this is very important: obstacle-free. Other parts of the room might be tucked into nooks or around tables, but you get to this prayer area by going in a straight, unobstructed line from the door. Prayer shouldn’t be tucked off to the side of life if you want to form kids around it. Just as the altar area is the focal point in a church, the prayer area should be the focal point in a Christian teaching space.
The prayer area gives children several things to do to make their prayers and offer their love. They can make their cross. They can add a little bouquet of silk flowers to the basket. They can put a felt candle into the sand box mounted under the icons. They can kiss the icons. They can read a picture version of prayer, hold up a “help” hand to God, or press the prayer button for a speech output button to say, “Lord, have mercy. Lord, have mercy. Lord, have mercy.”
The swing arm icon mount allows children to venerate even if they’re using a wheelchair or scooter or if their height makes it difficult to reach over the candle box. Every part of the prayer routine is available to children with disabilities as well as those without disabilities.
Icons that are especially meaningful for the children, such as St. Nicholas and the Theotokos, are at a level where the children can kiss them or touch them without help.
Children are encouraged to use all of their senses to engage in prayer. This prayer area meets several types of sensory needs and encourages children to pray with their eyes and hands open to the beauty and presence of God.
The prayer area is usable for children with impaired vision. To make the prayer area more engaging for children with visual impairments, add a carved or resin relief icon to the swing arm mount. The felt candles in kinetic sand and the small silk flower bouquets can be navigated easily and safely by touch.

Teaching is not only imparting knowledge and habits. It’s preparing the way of the Lord. Set up an accessible prayer corner in order to prepare for the children God has called into your home or classroom.

When you use the prayer corner regularly, establish a routine of bringing flowers and adding a candle to the sandbox first. In my church school class, I would stand at the door holding flowers to hand to the children as they entered. They would then proceed directly to the other side of the room, where they offered their flowers to honor the Theotokos. My co-teacher would then hold out the felt candles so the child could choose one to place in the sandbox under the icons. The children would kiss the icons before they moved to play, and in this way, each child entered the room in prayer. (We also had crochet censers for the children to use in the classroom. I list them below, though they are not part of the prayer wall currently set up in our home.)

(The children volunteered to show people how they use their prayer corner. It’s not rushed or chaotic when we pray in our daily routine. You’ll want to take your time in real life.)

Here’s what you’ll need to set up a similar prayer area in your home or classroom. Amazon affiliate links are offered where available to make it easier for you to find items you see here. Such links are marked (aff).

Holy Icons. You can find holy icons in Orthodox or Catholic church bookstores or online from places such as Skete.com, Uncut Mountain Supply, or the Ancient Faith Store. Make sure that some of the icons are low enough for the children to reach on their own.
Swing Arm Icon Mount. We used this wall-articulating tablet mount (aff). I cut the thinner section out of the included silicone pads for mounting smaller tablets, and the tablet mount perfectly fit a standard sized 6″x10″ wood-mounted icon of the Theotokos. My husband carefully drilled indentations to the wood mount so that it fit well over the fasteneres. For larger icons, you might consider a swing-arm television mount. If you have more advanced carpentry skills, you can build an articulating mount from scratch. The key is to allow children with mobility devices like wheelchairs and walkers and scooters, to be able to reach and venerate the icon. This also helps with shorter children who have trouble bend over the sandbox and flower basket to reach the icons.
Flowers and a hanging flower basket. You can find hanging flower baskets and silk flowers at your local craft or home decorating stores, or find them online. This is the basket (aff) and some of the flowers (aff) shown. I have made a prayer wall using this smaller wall basket (aff) as well. Make sure the basket is easy for all of the children to reach. Bringing a flower to the basket is a wonderful way to enter the room and to begin interactions prayerfully.
Wall-Mounted Half-moon Planter, Felt Candles, and Kinetic Sand. This planter (aff) mirrors the shape of many candle boxes for lit candles in churches, and it’s scalloped edge adds visual and textural beauty. It will hold a fair amount of kinetic sand (aff), which can be removed and used in lessons or for a calming sensory break and replaced as needed. I ordered the felt candles from the BrightHappyCreations Etsy shop, and I have two sets, one in bright colors for everyday, and one in white for Pascha or other special feast days. We store our felt candles in a short bud vase in our taller prayer nook, and I bring them out for the children when we are gathering to learn and pray.
UPDATE: Annalisa Boyd, author of The Ascetic Lives of Mothers, Hear Me, and Special Agents of Christ and creator of SaintsBox adapted this tutorial for her family and made low-cost popsicle stick candles with felt flames. Check out her Instagram photos of her children’s prayer area as her children use it. Annalisa also posted a video tour and explanation of how she made the candles on her Facebook wall.
Crocheted Toy Censer or Empty Hand Censer. Though we do not have a toy censer out in our prayer area currently because I am repairing it, children in our home and my classroom have always enjoyed playing priest or nun and pretending to cense the icons and the room. You can find toy censers at the CozyHouseCurios or LivingLiturgically Etsy shops. CozyHouseCurios also offers a pdf pattern. We also have two hand censers at home, so the children can imitate my husband or me when we use the lit censer. We purchased our hand censers from our church bookstore, but they are also available at the Ancient Faith Store.
Laminated Visual Prayer Aids. Stop by my Special Needs Resources tab and print out some of the resources that work best for your classroom or home. Laminate them, punch a hole in the corner, and hang them on the wall to use when you pray together. You can also print out the Flexible Orthodox Liturgy Visual Schedule cards onto cardstock, cut them out, number the backs, and mount them in order onto a binder ring to hang in your prayer area or toss in your church bag.
Speaking Prayer Button. I used one of the Learning Resources Recordable Answer Buzzers (aff) to record, “Lord, have mercy. Lord, have mercy. Lord, have mercy.” Because my children like to press the small red “record” button, which erases messages, I also sealed the small red button with melted beeswax once I had recorded the prayer. I mounted the button to the wall with Command Picture Hanging Strips (aff), which I also used to place several of the icons on the wall above. There are only about 7 seconds of recording time on the buttons, so you will need to keep the prayer short and sweet to use one of these buzzers. I have used them in several places in my home, so it was more economical to use the short message buzzers. However, this and similar 30 second recordable buttons (aff) allow you to provide longer pre-recorded prayers, such as the Lord’s Prayer (20 seconds-ish) or the prayer before meals (about 8-10 seconds).

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When you have your accessible prayer area set up in your home or classroom, post it on Instagram with the hashtag #accessibleprayer! Share your nurturing and creative ideas, and let’s build one another up!

I’m speaking at the Ancient Faith Writing and Podcasting Conference this June, and I’d love to see you there. There’s still space to register, but the conference is almost sold out.

Don’t forget to follow my blog while you’re here.

Categories: advice, autism, christian, concrete thinking, faith, family, homeschool, icons, instruction manual for my family, Liturgical Season, Orthodox Faith, special needs child, spiritual formation, traditions, Uncategorized, vintage faith

Feed The Parents: Lent for Families With Special Needs

Summer Kinard

Posted on March 7, 2019

There’s no shortage of advice for how to give things up for Lent, how to read extra books for Lent, and how to eat simpler foods for Lent. But parents of children with special needs can’t use much of that advice. Instead, we have to resist these opportunities to overcommit by seeing them for what they are to us: opportunities to overextend our resources.

This Lent, resist the temptation to overfunction.

You’re a person who probably spends most of his or her time caring for your children or fretting over how to meet their needs. For you, overdoing it a bit is normal and often necessary.

Don’t add anything to your to-do list unless it feeds you.

How can you tell what will feed you? Look for what will lower your stress and build up your most important relationships.

Some examples of how to evaluate and address common Lenten pressure points:

Caffeine. Giving up coffee might not be good for you. It might wreck the fragile balance you’ve brought to your days. Having coffee or tea with a friend or spouse once a week, though, might lower your stress and build up important relationships.
Fasting. Changing your family’s food routine in a dramatic way might be a recipe for disaster. Consult your priest as needed, and consider ways you can be kinder –starting with kindess to yourself and people in your household. If the goal of fasting is to learn about the unending love of God, look for ways to apply the love even if your family’s needs make ordinary food changes impossible or inadvisable.
Almsgiving. It might help to ignore requests from organizations during Lent. Almsgiving is meant to be between two persons, so ignore organizations without guilt this season. Instead, focus on small, real ways you can help someone like you. Can you afford another weighted blanket like the one that helps your child sleep? Donate one to a foster home or domestic violence shelter. Do you know another parent in a special needs family? Send them a card in the mail. Focus on the personal aspect of almsgiving, whether you are able to give money or resources to relieve another person’s suffering or take a few precious minutes to let another parent know you’re thinking of them.
Social media. Maybe the people who announce that they’re leaving social media for Lent have already vacated your timelines. If not, make sure you have an email address or other contact option for the ones you’d like to keep in touch with. Social media is one of the best technologies for breaking the social isolation that comes with special needs parenting. If you want to limit screen time or be kinder or mindful or read only notifications, go ahead. But be realistic about your unusual schedule and heavily demanding family life. Will you be able to talk to friends without social media? If not, you will probably want to keep your accounts up.
Attending More Church Services. It might seem scandalous at first, but I’m going to suggest that you try to go to a few of the extra evening services without your children. See if a trusted friend or your spouse can stay home with the kids for a few nights during Lent so you can go and soak up the beautiful prayers without dividing your attention as much as usual. Trade childcare duties with another special needs parent or your spouse so that each parent gets to go to a service or three without the children. This doesn’t mean you should neglect taking the kids to church in general. It means that all those extra services in Lent are an opportunity to feed the parents.
Going to Church in Lent With The Kids. The Sunday service will probably be longer by at least a few minutes. Prepare for the longer service by reading the Gospel at home before you go to church in case you have to walk the kids around more. Consider making a quiet activity to give the children during the extra prayer times. (My Church Bag Tour has some ideas.)
Reading More Books. Reading a book with friends sounds lovely, but when it’s a daily habit or on a tight group schedule, special needs parents frequently fall behind and drop out. If you want to add reading, try finding times when you can read aloud from a beautiful book. Parents can feed each other by reading aloud in this way. Audiobooks might help, as well. If you join a reading group, tell the group leader ahead of time that you will probably not be able to keep up. That way you don’t feel guilty when your kids need you more one week and you don’t get to the assigned reading. Discussion time when you only listen can help you when you get a chance to read the book later.
Silence. If you cannot maintain silence in your home because of your children’s needs, find a few minutes when you can be quiet on purpose. It’s hard when you feel the weight of responsibility to help kids with complicated communication needs to talk, but intentional quiet for 5 or 20 minutes at a time won’t set your child back. If you decide to be quiet in the middle of the day, you might use a visual timer (like this one that I love–affiliate link) to let the kids know when you’ll be back to speaking.
Prayer Routines. Some people will encourage you to add a simple 45 minute prayer routine to your day in Lent. Those people aren’t familiar with special needs life, so it’s best just to thank them and move along. Prayer is a great practice. But you need to be fed, not to fall asleep reading prayerful poetry. I recommend praying in a way that your kids can see, too. Even if you’re not used to doing so, go to your holy icons or wall cross and say out loud that you need help. Just ask for help. Let the kids hear you and see you do it. Say “thank you for helping us,” and walk away to go about your business. Add that routine of walking over and praying in that place, and you will give yourself a gift. You will start to let go of your burdens when you ask God for help, because you will have a physical routine along the lines of dropping your prayers into a spiritual key hook or dresser, the same way you put your keys and wallet in the same place when you get home each night.
Prayer Lists. Another way to pray that doesn’t ask you to overfunction is to go to that prayer corner and tell God you’re there, no matter how you feel. Offer whatever you have –exhaustion, frustration, anger, inadequacy, brokenness, sadness, regret, repentance, joy, mixed feelings, ambitions, jealousy, crankiness, laughter, gratitude, grief, fear — all of it, no matter what you’re feeling, to God as if God is listening. That will help you know that God is listening, and that will help you listen for God, too. If someone asks you to pray for them, offer yourself to God like this first. Then tell God about the person’s needs. Ask God to help. Then let it go.

Be kind to yourselves. God loves us. God is with us right here amongst our still-not-potty-trained sticker charts, our occupational therapy tools, our instructional posters, our special feeding equipment, our sensory regulation tools, our stacks of books and games, our hopes, our rocking chairs. Ask for help. Build relationships. Do what feeds you. Resist the temptation to overfunction.

Good Lent to y’all!

Want to learn more about practical, concrete ways to pray and grow in faith? Follow this blog, or come hear me in person at the Ancient Faith Writing and Podcasting Conference this June 13-15.

Categories: advice, christian, concrete thinking, encouragement, faith, Liturgical Season, Orthodox Faith, special needs child, spiritual formation, Uncategorized

Tagged: autism, Lent, parents, special needs

Learning to Speak

Summer Kinard

Posted on February 26, 2019

I couldn’t pronounce the letter R until I was six. Once I could, it turned up in odd places where it was planted by my family’s accent. Boil some oil on the coil, and don’t add water. “Borl some orl on the corl, and don’t add werter.” To this day, I cannot, as myself, say “gargoyle,” “Oil,” or words in sequence with Rs and Ls. My children laugh when I say, “the gargrrrl ate the carn earrrl” in my normal voice and “the gargoyle ate the corn oil,” in a fake British accent.

To fit in, I learned to speak like someone who is not me. I can talk with wealthy white people by dropping my natural speaking voice an octave and taking my accent in a hard turn to the Northeast. I can speak with people comfortable with women being feminine by dropping my natural speaking voice half an octave and letting my polite Southernisms out to play. Only my children and family hear my real voice, the one with inconsistencies and extra consonants, the one whose music sits higher on the staff and whose laughter is a descending scale.

I remember when “like” entered my speech as a verb. My cousin, who was good at being cool, pulled out a little booklet from her teen magazine. I was 9, and she was 10, and we were going to spend the sleepover learning to talk like Valley Girls. “Like, gag me with a spoon!” we giggled. “She was like, ‘I have pink Jordache and mint green ones.'” We were cutting edge conformists, talking like the rich girls on television.

I grew up in the mileau of “yes, sir,” and “no, sir,” and “yes, ma’am,” and “no, ma’am,” and this was respect for my elders. I was to look at people when they were talking to me or when I answered them, which probably explains a lot about my tendency to play far away from other people. At the edges of creeks and sandpits and woods, people didn’t make you look them in the eye to see their pain and fear and doubt. It was always too hard to see right through people. They didn’t usually like being seen through, but they seemed to ask for it rather a lot. I imagined that other people, cool kids like my cousin with the teen mags, had umbrellas in their irises to block out the things people didn’t know they said when you looked at them.

I couldn’t not see, so I had to learn to speak instead. I had to learn that people don’t like to be described. Someone who is practically screaming with anxiety and fear doesn’t want you to say, “I see that you’re terrified.” You can offer them tea or water, and you can see if one of the other umbrella people will sit with them. What you cannot do is let them know how transparent they are. You cannot say that walking into a room of them is utterly baffling because they all lie to each other constantly. I don’t understand if I’m the one making them uncomfortable or if they only hate themselves, so I stay out of the room most of the time. Some of them think themselves dreadfully friendly for pretending to look at you so you can admire them. It’s exhausting to listen to how friendly and honest and good they are, as they patch and spackle the cracks in the self esteem they think so valuable.

I don’t have self esteem. I used to feel bad about it, but now I just accept that it’s a fruitless quest for me. If I try to get self esteem, I wind up a weeping mess. Autistic people don’t have time and energy for made up problems like self esteem. It’s hard enough navigating the world without trying to think of oneself beside oneself, to pat oneself on the back in order to encourage oneself to think well of the thing we’re pretending we are. I’m not whatever it is that needs umbrella eyes to hide it.

The umbrellas and the self esteem are not off topic. They are part of learning to speak. I am autistic, and my children are autistic, and my husband is autistic. We have an unhiding house. I can see what my nonverbal children mean just fine, if I look with my real eyes and speak in my real voice. My real voice is high pitched and full of pictures, perfect for children. My real voice is kind and healing, perfect for broken hearts.

You don’t need to bring your umbrella to sit at my table. Set it down. Let’s help each other to say something true. We are all here learning to speak.

***

Summer Kinard, BA, MDiv, THM, is an Orthodox Christian author and speaker. She loves to learn and teach and to share what God has done for her. Come here her speak at her workshop on Concrete Thinking as a Model for Evangelism this June at the Ancient Faith Writing and Podcasting Conference.

Categories: autism, conversation, kitchen table, life lessons, Uncategorized

Tagged: actually autistic, code switching

Shattered: Praying with PTSD

Summer Kinard

Posted on February 16, 2019

You’ve read about my experiences praying with PTSD in other posts, such as “The Discipline of Weeping” and “Return to Your First Love: On Heart Prayer.” If you’ve spoken with me in person, I probably talked about the way God heals us sidealong. It’s time that I start talking more about the hands-on ways that God has helped me heal from extensive childhood trauma. For that I’ve created a new series in my just-launched video podcast, Some Myrrh. It’s called, “The P is for Prayer,” and you can watch or listen to the first episode now. This one is for anyone who has ever felt “Shattered.”

Categories: advice, christian, concrete thinking, conversation, discernment, encouragement, faith, Friday Faith Talk, life lessons, overcoming blocks, Some Myrrh, spiritual formation, Uncategorized, vintage faith

Tagged: easy prayer, hands on, how do I pray when I'm, prayer, prayer when you can't pray, ptsd, survivor

A Little Bit of God

Summer Kinard

Posted on February 13, 2019

“We don’t know if she’ll understand you, but she can hear you even though she’s sedated.”

I stood at my mother’s bedside last summer, watching as machines breathed for her. She was small, wasted by an infection that was worse than she had thought until it was almost too late. With my blue-gloved hand – required for the quarantine ward – I held her hand as she lay on the cusp of life and death, and I thought, “If only there were a wonderworker here, some holy person who understood about God and healing. I would ask them to pray, and she would get better.” I could almost see those saints on church walls come to life, waiting just outside the door to Mom’s hospital room.

Meister_von_San_Apollinare_Nuovo_in_Ravenna_002

Some of the saints who are better than me. Virgin martyr saints in a mosaic in Ravenna, holding their victory crowns, wearing white veils over bejeweled golden clothing, marching along the walls towards the altar.

I knew there was a flaw in my thinking. I knew that walls couldn’t keep out holiness, not even the double-sealed walls and doors of the negative pressure room where Mom lay. My sigh was muffled by the face mask I wore, but my words were clear. “I’ll be back, Mom. I have to go get something.”

That evening, I returned with an arrangement of fake flowers, a little icon of the Protection of the Holy Mother of God, and my sister, who brought a rosary and a little standing cross. Mom’s condition had deteriorated in the few hours I had been absent, but this time when I walked into her room, quarantine mask and gloves in place as usual, I knew what to do. Just a little beauty reminded me. Maybe I only have a little bit of faith, and maybe I’m only a little bit holy, but I know that God is with me.

Mom’s sedation was wearing off when we arrived, and I looked across the bed at my sister. “You know, I can almost hear Grandma and Nana talking over each other right now like they did before they died. They’re here praying for Mom, and they are saying different things at the same time, even though they agree with each other.” Mom started to wake up at the mention of her mother and grandmother.

“Mom!” we said in unnaturally loud voices amplified by the silence of the sealed room. “Mom, guess what? You’re back in communion with church.” My sister told Mom about how a priest had come and administered the rite of the anointing of the sick, and how part of the prayers included forgiveness of her sins and restoration. “Mom, after more than 40 years, you’re a good Catholic again.”

We chuckled, but we were happy for the grace that had come to her. Mom had suffered a lot over those years from the harsh words and actions of people who wanted to shame her for having me when she was an unwed teen. She had rarely gone to church because she felt she had nothing to wear.

I had known since I was a child that what she meant was that she needed mercy to cover her. Now it had.

She nodded her head and tried to wake up.

Then I remembered about God and mothers and how bad we need them when death is creeping around.

“Mom, I brought you an icon of the Holy Theotokos, the Blessed Virgin. She’s your mother, too. She never stopped loving you.” Mom opened her eyes and saw the little image of Mary.

I snapped this photo at the time because Mom wouldn’t let the rosary or the icon go, even when she fell back asleep.

Suddenly, Mom was lit from within. Though she was intubated and restrained, she tried to grab the icon to kiss it. Her face was filled with joy. We raised the icon to her mouth to kiss it, and tears flowed down her face. I sang “Ave Maria” through a quarantine mask that night, and my mother glowed and kissed the Mother of God until exhaustion overcame her.

That night, my sister and my brother-in-law and I talked about what we would do if Mom recovered and what we would do if she did not. Mom would need to live in a different place for her lungs to heal. She needed to be near the sea, if possible, and she would need someone to help her often. If she didn’t have those things, she probably wouldn’t recover once she left the hospital. The next morning, I woke up with a prayer in my heart. It wasn’t a wonderworker’s prayer but the kind that is said by people who only know a little bit of God. “Father, help. Give my mother a good choice. Give her the possibility of living.”

When I got to the hospital, the quarantine had been lifted. The illness that plagued her wasn’t the more contagious one that they had feared, though it was at least as serious in how it had affected her. I sat down in the chair near her, wondering if it was only my wishful thinking that made me see her as having turned back toward life. Was that one moment of blazing grace the beginning of recovery or simply a good ending?

My phone rang. It was my uncle, calling to say that he and his wife would take my mom in for six months so that she could recover. He lives a couple of blocks from the sea, and he’s retired and has taken her to her medical appointments.

When I flew home, I compared the shape of that experience with Mom to other times I had encountered a little bit of God. When my son was diagnosed, and I was told that he had almost no testable cognitive ability or communication ability, how I longed for a little bit of God! I remember how fierce that pebble of faith was then, when I demanded a mountain move in exchange for something as small as my love. And how swiftly God helped us then, too. And how gradually and faithfully and steadily my child has grown, until I found myself begging at night, “put your love in his heart” so often that the prayer got bright enough for me to see that God was already there. Almost like my mother’s reconciliation with God retold the story so that her glowing face showed us Who was with her all along.

I’m writing this now because I can take this shape of prayer and match it up to every story in my life. When I was a girl who was told I was not allowed to have the gifts of the Holy Spirit (teaching, knowledge, and so on) because they weren’t ladylike, I went home and decided that it was ok with me if I wasn’t allowed to talk about it, as long as I could have a little bit of God. When I was abused and broken and terrified, I went to the chapel at night and cried that even so, even if that was all I was, I would hold onto the little bit of God that I could see. I never read the Gospel except thinking of myself as the dog under the table. I never deserved any of the things they talked about in the talks about victory. But even though I spent most of my life believing it would embarrass God to be associated with me, I couldn’t stop treasuring every little bit of God I could find.

With a lot of help from my aunts and uncle, Mom is living on her own again now. With a lot of help from therapists and saints and a lot of hard work and training, my son has above normal cognitive function (though his communication challenges are still extensive). With a lot of work and patience and people trying to coax me out of hiding, I went on to get three unladylike university degrees in church history and theology. With even more work, and thousands of hours of psalms and hymns and spiritual songs and the love of many people and the guidance of many elders, I’m halfway willing to hope that God isn’t embarrassed to be associated with me. But one way or another, I haven’t stopped that habit of picking up every shard of the shattered pieces of life where I can see God’s face reflected. I am not a saint on a mountain, but I am a witness to God’s love. I can do that. I can tell you a thousand million ways and more that I have seen that love poured out on me, the people around me, on and in you, too.

That’s because there’s no such thing as a little bit of God. God is all in all. Even though I’m not a wonderworker, God works the wonders. I can see a little at a time, and I see a little bit of God in every story I turn over in my hands, and in every day no matter how hard or happy, and I can see a little bit of God in you.

Categories: christian, discernment, encouragement, faith, gratitude, grief, instruction manual for my family, life lessons, overcoming blocks, special needs child, spiritual formation, survivor story, thinking out loud, Uncategorized, writing as woman

Tagged: everywhere present, faith when it's hard, God in adversity, God with us, God's simplicity, mercy

Mercy Cleanings

Summer Kinard

Posted on December 6, 2018

A few weeks ago, I traveled to Antiochian Village to attend the Ancient Faith Women’s Retreat. On the first morning, I went to the first talk with that morning’s Gospel repeating through my heart:

Go and learn what this means, ‘I desire mercy, and not sacrifice.”

Image from The Illuminated Gospel of St. Matthew by Oakwood Publications of Matthew 9: 9-13

The gospel had stuck in my craw that morning, stirring up the long weariness I had carried over my feelings of inadequacy in parenting. I sat myself down gingerly in front of the icon of the Theotokos, my failure smarting like a splinter I held out to the Holy Mother.

The icon was screen-printed and matte. There was no gold to catch my eye. Yet, the curve of the Theotokos’ fingers did catch my eye. She was supporting him. There was a quickness to the gesture that called out to me, reaching out to me with my sadness and frustration. I was quiet, waiting. My friend was speaking eloquently about cooking with and without oil. I suppose my mind was opened by the thought of oil and the closeness in Greek between the word for olive oil (elaiolado) and the word for mercy (eleos). Because it was then that I heard it:

One word, spoken in my heart, as though placed there with the gentle gesture of the Theotokos’ hand.

“Eleos.” Mercy.

I looked up at the icon and waited.

“Pour eleos out on your children,” I heard, and I saw myself bending over to pick up one of the hundreds of daily messes the children pepper around the house. Only this time, I saw it differently. My hand, when I bent over, was like a spigot of the water of grace, pouring out over my home, over my children. “Clean up after your children without bitterness or complaint. Pour out eleos on them.”

Suddenly I understood that morning’s Gospel reading. “I desire mercy, and not sacrifice.”

I had tried to be a good parent, but in that area, I had gotten it all wrong. Sacrifice means doing X in order to receive Y. It’s transactional, and like any transaction, sacrifice sets one up for anger, disappointment, and frustration.

Mercy is pure gift. Not only that, but mercy is inexhaustible.

We are taught over and over in articles and well-meaning advice to sacrifice for our children. That’s because sacrifice keeps us in a position of control and subjects us to the judgments of others who believe themselves to be in control. Very few articles will advocate for mercy, because mercy always points to God as God.

Mercy is what humans fear, not judgment.

Don’t sacrifice your relationship with your children on the altar of public opinion. Don’t sacrifice your relationship with your children in order to try to get them to imitate your behavior. When you have special needs children, cleaning up after them is not a matter of teaching them (because they probably will not follow your example for many years if at all) or living up to the standards of other people (because they aren’t your God) or living up to the life you imagined without your current challenges (because God meets us where we are, not waiting to meet us in a perfectly neat and decluttered dream home).

You will only be offering sacrifice if you try to pick up the toys and the books and the body messes and the food and the drink in order to win favor or approval or respect. You will become bitter and grumpy, and you’ll probably provoke the children to be less engaged and more messy. You will be sacrificing yourself and your sanity and your relationships to prove to God that you don’t need His help. Wait. What? Yes, when you sacrifice yourself, you forget that God isn’t asking you to do so. God asks one thing of us: to be merciful as He is merciful.

Pick up after your children in order to pour mercy on them. Do it because you love them, not to assuage the prickling temptations of comparison and shame.

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I came home from the retreat with a heart full of the joy of companionship and plenty to reflect upon. I was surprised to find that the messes didn’t make me angry. I stepped over them or cleaned them, depending on what else I was doing. Each time I bent over to pick up paper shreds or clothing or to wipe up a spill or throw away trash or to sort layers of mess that someone had made in a moment of sensory overload, I thought, “Eleos.”

I began to feel peace in my home – not always freedom from conflict – but peace. Then, after a few days, I noticed the children bending down next to me to pick up. I was amazed. I could count on my fingers the number of times the children helped me clean up before this! But they did it again the next day, and the next.

The children of joy have decided to clean the floor everyday by skating around on baby wipes. They’re having fun in this photo. Two of their brothers joined in right after I took the picture.

Then they started coming up with ideas of their own. They asked me if they could have baby wipes to skate around the living room to clean the floor. One child started, then three others joined.

I don’t understand it, the way I don’t understand any joyful surprise. But it’s true: having mercy on my children seems to have spread mercy to them. Now they’re having mercy on me, too.

I share this in hopes of lightening your burdens, not to turn mercy into another type of sacrifice. It wasn’t when the children began to join me in cleaning that my burden lifted, but when I began to treat cleaning as a mercy. I know that some of our children — some of my children — will not start cleaning up just because of a change of heart. Some of them might not have the ability to do so, and some of them might not understand. But even in this small way, in the tending of the ground beneath our feet, there is nothing to stop grace entering their souls.

Have mercy.

Lord, have mercy.

Categories: advice, christian, discernment, encouragement, faith, family, life lessons, Messy Parenting, Orthodox Faith, overcoming blocks, special needs child, spiritual formation, Uncategorized

Tagged: autism, executive function, exhausted mother, homemaking, how to clean with special needs children, mercy, messy home, sacrifice for your children, what does it mean to have mercy

The Discipline of Weeping

Summer Kinard

Posted on October 11, 2018

When I was born, and no one knows this, A tear fell from Jesus_ judging eye From the cross Onto my infant tongue There to suckle me until I Could eat His flesh.

I wrote those words over 20 years ago when I began to reflect on the way Christ came to me in mercy from my earliest childhood. I haven’t been able to shake that image, through all these years, of the saving gift of tears. I read about tears in spiritual writings. I have experienced the gift of tears when I have needed healing or repentance. I practice tears.

I am in many ways still a beginner, but I have learned a little about the discipline of weeping:

If you’re going to clear your eyes of false reality, you have to learn to cry in truth.

The fathers advise us to weep for our sins. Yet, most of us don’t spontaneously burst into tears of repentance or ecstasy with God.

That’s because we have to practice in order to cry for the right reasons.

When I completed 5 years of intensive study of the fathers and was taking my exam for my Master of Theology degree, I answered the questions put to me and then said, “It’s as though the whole universe is filled with the tears of Christ, and those tears are joy and healing to us.” My good-natured professor and mentor smiled and nodded and asked me to explain another complicated view of theological anthropology in the 4th and 5th Century Fathers.

We cry and follow the tears till they become a stream flowing toward the river of God, and we step into the very suffering of Christ in the water of baptism.

We cannot escape difficult experiences through lofty language. We have to go through trials. We have to sit by the hospital beds. We have to repeat a dozen, a hundred, a thousand, ten thousand times, until the words pouring out of us awake the words in the little one we are teaching, “I am thirsty. I want milk.” We have to find hands to hold through the hard parts of walking, labor, lifting, revealing, waiting, releasing. Sometimes our hands are cups of trembling.

There is little one can do sometimes but stand by and weep. There are times in special needs life when my weakness is crushing. I am so exhausted and overwhelmed that I cannot control myself, or I can control myself and it doesn’t help anyone anyhow. I fail or excel, and yet, I am only the witness to grace, not it’s receptacle. That’s how it feels, anyhow, before the tears come.

But when I practice weeping, I know that even I can have a myrrh-streaming heart. The waters of the earth and above the heavens, all sanctified, so holy and sometimes so remote in the dry land of my broken sadness, break through to me in the simple act of crying out to God.

“O Lord my God, I cried to you, and you have healed me,” the psalmist says.

The healing is the connection between me and the women standing at the foot of the Cross, and of Christ himself, and of the waters he blessed at his coming: waters of the womb, waters of the rivers, of the sea, of the table, of weeping, of the grave, of the morning. These holy waters likewise bless my tears by connecting me back to the God who is with us. It was his tears I entered when I was baptized.

Christ makes holy thewaters of the womb, waters of the rivers, of the sea, of the table, of the grave, of the morning.

They have never been far away from me, these waters of grace, but I cannot always see them for all the lies I set daily before my face. Truth and weeping go hand in hand. Grief is a great clarifier of joy.

I have heard and sometimes experience tears of joy, but they only came with practice.

Practice weeping in the night. Cry over any sorrow, but cry to God. Practice weeping when you’re in the car alone, or in the shower. Cry in frustration or anxiety, but cry to God. Practice weeping right in front of the faces of injustice. Cry in anger, but cry to God. Practice weeping in your lullabies. Cry in love, but cry to God. Practice weeping in the places you’d rather not be. Cry in sorrow or regret, but cry to God. Practice weeping in the kitchen. Cry for help or worry, but cry to God. Practice weeping in your garden or in church or at the table. Cry for laughter and joy, but cry to God.

In this way, your tears will wash away fear. In this way, you will be ready when it’s time to rejoice.

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Categories: advice, christian, discernment, encouragement, faith, Friday Faith Talk, gratitude, life lessons, overcoming blocks, special needs child, spiritual formation, Uncategorized

Tagged: asceticism, crying, holy joy, holy sadness, mercy, not alone, special needs parenting, spiritual discipline, sweetness, tears

Patron Saints of Autism

Summer Kinard

Posted on May 10, 2018

For those of us who ask the help of saints in our daily lives, one of the first questions that comes along with an autism diagnosis/recognition is, “Who is the patron saint of autism?”

As far as I know, there are no official patron saints of autism. Yet, I can attest to the help and intervention of several saints in our autistic lives. Here are some of the saints that have made themselves known to us as helpers for autistic Christians.

Holy Theotokos. Sometimes it’s easy to read past important parts of scripture, like when the educated people of the time were surprised at how much Jesus knew when he had not studied in the temple or gotten the best education of his day. But his mother had studied in the temple, and she taught her son. Of course, when you’re talking about Jesus, you’re also talking about a lot of divine revelation. But there is also the human mother whose youth before the angel appeared was dedicated to the study of scripture and prayers. The Mother of God is also mother to us all, parents and kids alike. She prays for us and can help us with our anxieties and fears and with guidance in teaching and therapeutic living.
St. Anthony the Great. When my youngest son’s profound cognitive delay was first diagnosed, my son did not even have an idea that communication or language were possible. I remember looking at the paper work that declared my son’s abilities to be less than first percentile, and I immediately thought of St. Anthony. St. Anthony was taught to read by angels. I went to my icon wall in the kitchen near where I was standing and asked God to help my son and help us to teach him. Then I specifically asked that St. Anthony would pray for him, that my son would learn by divine intervention the same way that St. Anthony had been taught to read. Since I thought of language as reading at that time, I even asked that the saint would come and teach my son to read. One week later, my two year old son wrote the word “Hodegetria” on the magnet board with his little letters. It means, “She who shows the way,” and it’s the name of an icon of the Holy Theotokos holding Jesus and gesturing toward her son. We took a photo because we were astonished and thought we might be imagining it at first. Then, a couple of weeks later, our boy wrote Down Stairs Go on the board with his magnets. He could read and spell.
St. John Maximovitch of Shanghai and San Francisco. This beloved modern saint has reached out to our family often. We ask him for help in forming helpful connections in our brains and in helping with speech and language processing delays. He, too, was slow of speech, and I think his great love for us helps us a lot.
St. Nathaniel (AKA Bartholomew) the Apostle. When we first meet Nathaniel, Jesus calls him an Israelite in whom there is no guile. Guilelessness is one of the hallmarks of autism, and I am encouraged to have this Apostle’s prayers for helping us train our attention towards God’s love and for helping us navigate a world that is friendlier to lies than truth.
St. Panteleimon the Unmercinary Physician. While all of the Holy Unmercinaries are helpful, St. Panteleimon has reached out with his mercy. He was known for healing both the body and soul by the love of Christ and the best medicine of his day. We ask him for help to know which supports to implement and for healing and forming connections across our different bodily and spiritual systems.
St. Anastasia the Defender Against Potions, or the Healer. St. Anastasia is one of the saints who helps you with your problems and also has your back. She helps to defend us against malice and gossip or people who would attack our vulnerability. She was known for taking care of the Christians in prison who were going to be martyred. She is not afraid of anything, and she can bring comfort and lower anxiety. If you’ve noticed a theme here, yes, anxiety is a big challenge in autistic life.
St. Nektarios of Aegina. When my twins were a few months old, I had their little cribs right next to my bed. One night I woke up to feed my older twin. While I was feeding him, I looked over in his crib and saw an icon of St. Nektarios and had a strong sense that he was praying for us. I made the sign of the cross over myself and the babies and blew a kiss toward the icon in veneration (but veneration where you’re not going to risk waking up twins in the middle of the night). The next morning, I suddenly remembered that we didn’t have an icon of St. Nektarios. But I bought one right away! Since then, we have felt his love and guidance and prayers in our lives every day. He’s the patron saint of our therapeutic homeschool. In the broader Orthodox Christian world, St. Nektarios often helps people suffering from epilepsy as well as other ailments and conditions. We ask him to guide us and to help our minds, bodies, and spirits work together to love God and to give us a sound mind. Being in your right mind is a gift of the Holy Spirit that is open to autistic Christians, too, and this saint helps us toward that fullness.

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Do you have patron saints to add to the list? Share your stories in the comments!

I just signed a contract with Ancient Faith Publishing to write Of Such is the Kingdom: A Practical Theology of Disability. Follow my blog for updates. If you have a story of welcoming or being welcomed into the life of the Orthodox Church while living with a disability or impairment, please consider sharing your story with me {Share Your Story}.

Categories: advice, autism, christian, discernment, encouragement, faith, Friday Faith Talk, instruction manual for my family, life lessons, Orthodox Faith, special needs child, spiritual formation, traditions, Uncategorized, vintage faith

Tagged: actually autistic, asd, Asperger's, autism, autistic, Catholic, Christian, devotion, Orthodox, patron saints, prayer for autism, prayer for autistic Christians, spd

Mercy Warning

Summer Kinard

Posted on April 17, 2019

Tonight I soaked my arms in Epsom salt for an hour so I could type again. I am writing a book on the theology of disability, and it’s going well enough that my finger and wrist joints swelled up from the strain. Today I had to calm down my son who only just fought his way out of an OCD spiral caused by being confined for too long at night on a road trip we took a year and a half ago. He was crying because he loves going to the Lamentations service on Good Friday and the late night Pascha service, but he has not yet recovered from the abject horror he experiences during late night car rides owing to that roadtrip. I had to tell him he’s loved and good even if he can’t go this year. It’s ok, because God’s mercy is still here for him. It eats at him, his weakness, and all I can do is tell him what I know: that God’s strength is made perfect in weakness. That God comes to us, even when we cannot get to him on our efforts.

We made a family plan for Holy Week so that the children can go with us to the daytime services they love: Holy Unction on Wednesday, the Deposition on Friday afternoon, and the Harrowing of Hell on Saturday morning. One of the children who has the easiest to meet sensory challenges (and who is lightest in case I need to carry him) might go with me to the evening service on Friday, where I will sing in the choir. Usually we have gone as a family or most of the family for the big Friday service (our favorite), but our new church doesn’t have a role for my daughters this year. They only ask girls from an older age group to participate as myrrhbearers. Most of my children were only able to stay in past years because they looked forward to their sisters throwing rose petals on the tomb of Christ.

Our memories are shaped around roses and icons and candles and tombs and songs in the darkness, not because my children have all gone to the services or have all gone all of the time. They’re shaped around the cross because my husband and I have nothing else to offer our children so good as the great love of Christ. We tell them the stories and read them the stories and have shaped our home as a lampada to shelter the holy fire of God’s love, even when we aren’t good at bringing home the Paschal flame each year. Some years, only one of us has gone to Pascha. Some years, we missed it because our kids needed us to be home.

Every year, someone steps forward to shame mothers for not bringing children to all of the services of Holy Week. Some years the circulating post is about how children really can behave like well-regulated adults if we are just better mothers. Some years the assumption is that families are doing fun stuff and shirking their Christian responsibilities by not attending Holy Week services. Bless their hearts, the people who write those sorts of articles doubtless mean well. They are the sort of women who don’t have arthritis or disabled children or car trouble, who live within 20 minutes of their church and have a large group of encouraging friends who will help look after some of their not-disabled kids while they walk another of their not-disabled kids around to look at icons and grow sleepy or focused. They’re lovely, reliable people, the sort that probably back in Jesus’ day would have been at the table with him or maybe allowed to cook for him. They’re the right sort of people who do the right sort of things and can give advice about getting to heaven by acting right.

I’m sorry to disappoint you, but I don’t have that sort of advice to offer you. If I lived in Jesus’ day – a bastard kid born to a teen mom who was abandoned, an abuse survivor who didn’t grow up the right way, who has fond memories of getting excited about chocolate and maybe a dress at Easter and the joy of music declaring that He is Risen- I would not have been allowed to cook his bread or talk with his disciples. Don’t get me wrong. I would have followed him anyway, because he would have healed me. I would have loved him, even if I couldn’t appear with him in public, owing to not being the face you really want to see when you think of someone as big a deal as Jesus. I would not have been able to believe that he was really gone. I would have woken up early one morning when the first breeze of dawn brought to me a smell of new life such as I had never smelt before. I would have gone to the tomb even though I couldn’t roll away the stone.

Some people seem to think that the Christian life is about rolling stones away. They press on with their phenomenal strength of will and not-disabled bodies and wide social networks, and Christ rises on schedule for them. They don’t ask who will roll away the stone, because they take all of their children to all of the Holy Week services, and that gives them profound spiritual and physical abilities. They never rob their children of the memory of waving palms before the Lord or eating beans each day until they eat lamb and bacon and cheese (none of which foods most of my children will even touch, because most foods terrify them). They arrive at the tomb, and it’s open already, because of course it is. God is reliable. Do the right things in the right order, and your spiritual plumbing will work just fine. You will have the water of life right when you turn on the faucet. These people are never embarrassing to God, because they have the pattern down.

But some of us are here because we’re embarrassments. We love first and act without even preparing properly. We crucify Jesus and have to borrow a tomb. We gather everything good we have, and it’s only a bunch of spices. We’re the annoying pop up ads of church life, offering essential oils to the wounds of Christ. We show up before he’s even tortured and pour oil on him. Thieves, anyone? We take everything precious with us when we are wakened by the wind blowing from that tomb. We limp along and wonder how we’re even going to roll away the stone. We wake up when the kids wake us up, the way that sometimes one can rise from a dream into a day more beautiful than dreaming. We sing to them, “Christ is risen from the dead, trampling down death by death, and on those in the tombs, bestowing life,” as a lullaby and morning song, and that morning, it’s sweetest. There is even chocolate and muffins and beautiful eggs.

Somehow the Lord manages to rise for us, too. Somehow the mercy of God reaches us even though we only got to Palm Sunday and Holy Unction and Deposition. We see Christ trample death by death from the cheap seats of our houses as we watch over our disabled children. Somehow the smell of bay leaves on Holy Saturday morning fixes our hearts toward the love of God, even though we cannot take our children with us into the night watches. We are women who keep vigil night after night, even when we’re not at church where people can see us, cajole us, praise us. Even if like thieves in the night we steal into the icon corner and extend our swollen jointed arms toward the love of God and beg him to come and steal our hearts and our disabled children’s hearts away from every vanity of the world. When we can go, we go and kiss the Lord. But our lips still burn with the holy song, even when we sing it in a strange land.

If you cannot bring your family to Holy Week services, if you cannot fast as harshly as others, if you cannot eat festive foods, let the wind of heaven refresh you anyway. The mercy of God blows out from the tomb, and even if your dear ones sleep in their beds instead of the church, Christ will rise for them, too.

Tips for Holy Week When You Cannot Attend [Many] Services:

Look up streaming services from Orthodox churches, such as THIS ONE from Annunciation Greek Orthodox Cathedral. Play them if you are able so you can keep the rhythm of the beautiful prayers of Holy Week.
Find Holy Week and sacred music through online services such as Ancient Faith Radio, YouTube, Spotify, Pandora, Amazon Music, or Apple Music. Listen when you’re at home or in the car so that your heart is prepared for the joy of Christ’s Resurrection.
If you don’t usually pray with holy icons, print one or bring one out of storage into a central place in your house. Venerate it (kiss it and make the sign of the cross over yourself) often, because God is with us. If you are not able to print one or cannot have paper in the hospital room or other place where you have to spend Holy Week, search for “Christ Bridegroom icon” and “Resurrection Orthodox icon.” Screenshot some of the images onto your phone so you can look at them where you are.
Read St. John Chrysostom’s Paschal Homily, even if you can’t be in church for Pascha. It will remind you of where you stand with our victorious and merciful Lord.

Categories: christian, discernment, faith, family, holidays, Liturgical Season, Orthodox Faith, special needs child, spiritual formation

Tagged: disability, encouragement, not a supermom, tips for holy week, weakness

Posted on May 14, 2019

Posted on May 4, 2019

Posted on May 1, 2019

Christ is Risen!

Truly He is Risen!

Christ is Risen from the dead, by death trampling down upon death, and to those in the tombs He is granting life.

Posted on April 30, 2019

Posted on April 30, 2019

Posted on March 28, 2019

The most effective and lasting way to teach is through how we arrange and prioritize spaces.

Teaching is not only imparting knowledge and habits. It’s preparing the way of the Lord. Set up an accessible prayer corner in order to prepare for the children God has called into your home or classroom.

When you have your accessible prayer area set up in your home or classroom, post it on Instagram with the hashtag #accessibleprayer! Share your nurturing and creative ideas, and let’s build one another up!

Posted on March 7, 2019

Posted on February 26, 2019

Posted on February 16, 2019

Posted on February 13, 2019

Posted on December 6, 2018

Posted on October 11, 2018

That’s because we have to practice in order to cry for the right reasons.

We cry and follow the tears till they become a stream flowing toward the river of God, and we step into the very suffering of Christ in the water of baptism.

In this way, your tears will wash away fear. In this way, you will be ready when it’s time to rejoice.

Posted on May 10, 2018

Posted on April 17, 2019

Tips for Holy Week When You Cannot Attend [Many] Services: