Summer Kinard's Blog, page 10
October 11, 2018
The Discipline of Weeping
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.
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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.
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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.
October 9, 2018
Headcovering Because of the Angels
Why I cover my head as a form of devotion.
There are lots of reasons that women wear hats or scarves or veils. Some people wear them because they want to promote a culture of modesty. Some wear them to identify with a group. Some wear them from obedience. (Obedience can be a shortcut to wisdom if you obey someone wise.)
I cover my head because of power. It’s part of the uniform of my rank in God’s service. I serve the Lord God of Hosts. Hosts is the English translation of Sabaoth, which is feminine plural. That’s right. Every Sunday around the world, we share the Seraphic hymn, “Holy, holy, holy Lord God of Sabaoth.”
Well, you might say, grammar is tricky. Maybe there’s some unknown reason that in this one instance, God’s hosts are written in the feminine plural rather than in the inclusive masculine plural. I believe that there are certainly layers of meaning. But one of the meanings is clear to me: The God of the hosts of heaven is leading women.
This isn’t a radical feminist idea. I have heard from several priestmonks, spiritual fathers whose wisdom I cherish, who have told me that mothers are strong soldiers in spiritual war.
But now what does this have to do with headcovering?
I wear a headcover as part of my uniform in the spiritual war.
Yes, we’re all meant to put on the armor of God, which includes the helmet of salvation. But there’s that extra tidbit for us women in another place in St. Paul’s letters, advising women to cover their heads “because of the angels.”
Some people have wondered if this is meant to be a reference to the nefarious nephilim who took human wives. But let’s set aside our modern obsession with sex for a moment and look at the more probable meaning. Jews had for centuries sung the Seraphic hymn, which Christians had taken up by that time. The angels whose song we sing would be the first to leap to mind when women heard those words — because of the angels — and the women who were athletes for Christ, entering into Christ’s sufferings through baptism in full knowledge that they could be plucked from their communities and killed in the persecutions of Christians — Those women would have thought of the Lord of Sabaoth.
Because of the angels. Because of the hosts of God. Because we’re part of that host ever since we emerged from those waters and entered into that song.
We are surrounded at all times by a great cloud of witnesses and the holy angels of God. We are part of the hosts.
I cover my head to remind me of the mercy -and the strength- that I need to be part of that number.
August 20, 2018
May 20, 2018
Autistic Brain Owner’s Manual 4: Growth Spurts are Good Things
“Well, of course growth spurts are good things,” you might say, if you don’t know what they look or feel like.
I’ll let you in on the number one secret that throws off autistic progress: Growth spurts will produce feelings and behaviors appropriate to the developmental age at which a neurotypical person usually meets the milestone.
That means that if you have an autistic preteen making strides in therapy, he can suddenly have what looks like a psychotic episode to the uninitiated, or to the hyper-observant and autistically in the know, a growth spurt that looks exactly like the disregulation that happens in a typically developing two year old.
Remember the terrible twos and threes? They have a reputation because the brain connections formed by neurotypicals in those years — brain connections dealing with attention and communication — produce side effects when they first happen. Think of it like a power surge that temporarily overloads the newly enhanced power grid. I’m not sure why it happens, but it seems our brains like to test new ciruitry (long chain and cross-hemisphere synapses) by ramping up the power to full blast as soon as they’re made.
Here are some things you might encounter in a growth spurt, no matter your age (and I mean this even for the high functioning autistic adults out there).
Looping. You thought you might get one response/reaction from the communication or motor plan, but you got unexpected results. Your brain isn’t quite sure what to do next! Panic can set in.
What it might look like: You say something corny to a friend or relative, and to your horror, you keep repeating it. Your child won’t stop saying something annoying to a sibling or to you, even though they seem to look a bit afraid or confused and you’ve told them to stop. Your child keeps throwing the ball at the TV even though you told him it will break. You were getting some cleaning done when you hit your arm on the wall on accident and can’t stop rubbing it. You spent time with friends and want to relax, but you can’t stop thinking of or repeating to yourself something you said. Your student who was making so much progress smarts off and won’t stop the smarting off pattern no matter which consequences you threaten. (This can be annoying like, “I know you are, but what am I?” or angry defiance, like, “NO, you’re a jerk!”) Echolalia in the form of repeated sounds, words or phrases, or even cuss words is also possible.
What is happening? What you’re seeing is likely a motor plan or mirror neuron advance. Being around friends, gaining language, music, academic, or other new skills, gaining new brain-body coordination, or experiencing deep empathy can all push a long-chain synapse that’s been slowly developing to suddenly lay down the last track that will complete the chain. Your brain says, “Yay!” But also, “What is going on?!” The new development suddenly draws energy from our giant reserves of attention, and at the same time, the brain does what brains normally do — sends a giant test run down that new connection. The result can be profoundly overwhelming.
What to do about it: Pop the sensory bubble by moving to a safe, calm, quiet space. Your brain is experiencing extreme excitement and confusion at the same time, and you might not be able to control your behavior well. That adds fear into the mix, and the limbic system starts to freak out. As we learned in part 3, emotions are precognitive. That means they bypass the brain altogether. But that means they can be calmed even if your brain is going wild. This is the time for a quiet room, low lighting, a soothing set of sounds, rocking/swinging, no words (very important! communicate with pictures if needed but with as few words as possible), and physical safety for everyone around. You might want to go for a walk in a green space if there is one available, or have time in quiet to swing or swim. (If you’re a teacher and you see this, do not issue a punishment/consequence if you see this behavior. Instead see it as a cry for help getting appropriate soothing sensory input. Your autistic student will flourish when s/he gains self-regulation skills such as sensory soothing, not when s/he submits to behavior modification. They cannot in a growth spurt moment attend to behavior modification at all.)
Difficulties or changes in sleep and focus. Sleep disturbances and changes are a hallmark of toddler and preschool growth spurts, and they also show up in autistic children and adults. It’s important to know that your sleep changes might be related to progress, because sleep changes also go along with and exacerbate depression and anxiety.
What it might look like: If you’re making a lot of progress and suddenly have a few nights where you wake up a few times or days when you feel the need for a nap, it would be easy to get discouraged. But more likely your brain is just working on new connections. If you’ve practiced social skills and find yourself completely worn out, for instance, your brain could be doing the double duty of working on mirror neurons from socializing and doing all the things it had to do to learn those social thinking skills. It’s important not to get too discouraged by assuming that it will always be as difficult to think socially as it is at first. It’s important to realize that learning new skills for us can be extra draining because we’re forming a lot more synapses for each new leap we make.
What to do about it: keep track of the sleep differences on paper or with a fitness tracking device. Talk to your doctor about any changes that last more than a couple of weeks. Use good sleep hygeine like darkening rooms and avoiding screens for at least an hour before bedtime. Set aside time to catch up on sleep or adapt as you can to a sleep change that accompanies the practice or development of new skills (language, social thinking, motor planning). If the sleep change is part of a growth spurt, it will resolve in a few weeks.
Motor Planning struggles. This includes clumsiness, uncoordination, dribbling your drinks, spilling on yourself more often, dropping things more often, and also bigger things like going the long way through a building, taking wrong turns while driving, and stalling out in crowds.
What it looks like: Maybe you keep bumping your shin on the coffee table, tripping on stairs, dropping or spilling foods and drinks, bumping into door frames with your arms or head, or dropping your phone. You might poke yourself in the mouth with your toothbrush, struggle to put on boots, or fall off a chair. You might scratch yourself with your own fingernails on accident or feel as though small rubs hurt as much as big scrapes. You might walk into a building through the wrong door and have to walk a long way once you’re inside. You might forget the usual flow of a crowd in a familiar restaurant, workplace, library, or church and feel yourself stuck, unable to figure out how to navigate around a crowd to get where you’re going. Your brain is working overtime on a different issue, and sometimes other functions suffer temporarily.
What to do about it: Free yourself from shame. Give yourself permission to go more slowly, drink with both hands, sit closer to the table, hold the rail and go one step at a time with both feet on the stair before you go to the next, touch the walls or doorframes as you go to help you orient, draw a map or spend time imagining spaces you’ll enter, mark out the flow of human traffic in rooms so you can keep out of the crowds, take a scenic route if it keeps you out of heavy automobile traffic, use lotion or other sensory soothing options to help your hands feel better. You will also find that the sensory measures that help you regulate in general will be extra helpful in a growth spurt. For instance, a hammock swing can help you feel hugged and soothe you with the swinging motion. It also helps to build your coordination when you feel centered in space from such movements.
Decision fatigue.
What it might look like: You might have so much going on in your head that you find it hard to make decisions about food, clothes, and moving around. You might look into a fridge full of food and not know what to eat or feed others. You might not be able to think through an outfit for the day. You might get very anxious or frustrated if someone asks you to make a choice or to give an opinion. Even small things like whether to read a book or watch a movie can feel weighty when your mind is exhausted.
What to do about it: Make a list or have someone help you make a list of foods you can eat when you’re stressed. Tape it to the fridge door. If you eat mac and cheese and carrot sticks and chicken nuggets for a few days, no harm done. Reducing cognitive load prepares you for growth spurts, because you will have strategies already in place to help you help yourself through the decision fatigue. Have a go-to set of wardrobe rules or outfits, like a stack of clean shirts and pants that go together and a rule that underwear and shirts get changed each day, for instance. Give yourself permission to watch one of a few favorite movies or to read a favorite book for these days. Use the tips for motor planning to plot your movements, and give yourself permission to do fewer things outside the home when you’re feeling very overloaded.
If you encounter any of these symptoms of a growth spurt — especially if they’re happening around the same time — be gentle with yourself. Make yourself at home by soothing your senses, follow lists to help you make decisions, and do your best to get sleep and rest. Once you have leveled up on the skill that was developing, prepare for the next growth spurt by using the strategies outlined above and in the other sections of Your Autistic Brain Owner’s Manual.
See the previous sections here: One, Two, Three
Follow this blog to receive immediate updates on the rest of this series.
May 19, 2018
Autistic Brain Owner’s Manual Lesson 3: The Early Nerve Gets the Attention
Our brains starting at the brainstem work from the inside out. There are some types of experience that we process before we even think about them. These include first emotions and then visual input. Language and other higher thought comes later.
What this means is that your nervous system (and everyone’s nervous system) feels first, sees second, and thinks third.
For autistic people, language processing can sometimes be a challenge. It’s important to know how the brain works so that you can build on what’s already working.
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Your inside-out brain processes emotions first, then images, then language and higher thinking.
Feelings First
In every human being, no matter their cognitive level, emotions are functional. Emotions are precognitive. That means they are processed in the spinal cord, the brain stem, and the deep brain before they reach the parts of the brain used for thought.
Why does this matter? Because the early nerve gets the attention. Your feelings (including emotions and sense of safety from sensory soothing) will always win a battle for attention, even if they’re not acknowledged. They must be integrated with your thoughts through careful work training your attention to understand thinking, observations, and feelings at the same time. (I highly recommend the Social Thinking curricula for getting a boost in this area [not affiliated], but there are several programs or therapies that can help you integrate experiences.)
If you want to teach a child with autism, build from the inside of the brain outward. Use AAC or other tools to teach language for emotions first. Often progress is slow or non-existent because people trying to help start by trying to teach to the higher processing parts of the brain first. That’s backwards.
My formerly non-verbal, formerly profoundly cognitively delayed (less than 1st percentile), profoundly autistic son is now cognitively average for his age group with language growing with the help of AAC. He’s still autistic (of course!) and still working to develop communication skills, but he’s verbal now, too. The success in helping him function and grow into self-regulation skills comes after two years of intense therapies, including starting our pragmatic language with emotion filters from the beginning.
If you’re an adult reading this, the same principle applies. Sort your emotions and feelings first, because they’ll have your attention whether you intend them to or not. In order to help your brain work best and to clarify your thinking, start by checking in with your body. The pre-cognitive feelings you find there will give you important information about your physical state, and acknowledging your feelings will allow you to move on to more complex thinking, including speaking.
Seeing Second
After feelings, we think in pictures or concrete experiences. Like survivors of trauma, autistic people sometimes have challenges integrating the thoughts they see with what they understand or wish to do. I’m going to tell you how to use this fast form of thinking as a strength that you can build on.
Use pictures or symbolic language for teaching or scheduling.
Draw to help you think. Stick figures are fine.
Draw to help teach as well.
Follow the tips in my post to help Reduce Cognitive Load, which build on this visual strength.
Use AAC (Augmentative and Alternative Communication) to communicate, teach, to remind, and plan. The motor planning needed to use these forms of communication helps to connect the different parts of the brain.
Even if you have fluent speech, you can get through tough times or help yourself thinking better with AAC sometimes. {Here are some samples of core vocabulary boards.} You use them by pointing at the different symbols to form thoughts and sentences. This builds connections between language and motor planning and helps overall function. (Tomorrow’s post tells you what to look out for when you hit a growth spurt from continued progress making cross-brain connections.)
Visual schedules access the quick to get attention sight neurons.
Some mainstream organization tips like using photo labels are a sort of macro version of AAC. Look for ways to meet your extraordinary needs in ordinary ways.
Complete AAC systems have the same learning curve as verbal language. If you’re starting from very low language understanding, it could take around two years to be able to communicate with sentences, just like neurotypical kids take about 2 years to talk.
I met a young man with severe speech challenges at a conference who was not given access to Augmentative and Alternative Communication until he was a teenager. At the time I met him, he was a successful college student, communicating with a speech output device. What his story showed me is that we can build on brain strengths to help communicate and integrate higher thinking no matter our age.
Thinking Third
You might experience your own thought processes as instantaneous. Though feelings and sight catch attention first, the speeds of the nervous impulses are so fast that we don’t usually notice them in order. The important thing to remember is that slow or foggy thinking or communication or fast-racing thoughts can both be due to feelings taking up our attention – even when we aren’t thinking about paying attention!
In a weird plot twist, we think better when we acknowledge our feelings. Why? Because doing so allows our brains to work across sections and shifts the places where our brains work hardest at a given time.
Movement, making music, using our bodies to produce language (through pen and paper, keyboards or AAC systems/devices), checking in with our bodies, and making art can all help to strengthen our focus on thinking. This shift in focus that enables us to pay attention to our ideas and to tell stories about our experiences is what neurotypicals mean when they say they need to “clear their head.”
Our brains are profoundly plastic.
Most of us have larger than average heads with more than average quantities of synapses. When we take care of ourselves by building on the natural order of attention, we can turn that plasticity into a strength.
Follow this blog to find out why Growth Spurts are Good in the next part of the Autistic Brain Owner’s Manual. {Parts One and Two of the Series.}
May 17, 2018
Autistic Brain Owner’s Manual Lesson 2: Reduce Cognitive Load
People like to say that our autistic brains don’t come with an owner’s manual. I’m going to share what I have learned about my weird and wonderful brain, and we’ll have a good working outline for our autistic brains when we’re done.
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*These lessons will also help people with SPD, ADD/ADHD, many sorts of learning disabilities, and other neurodivergences that center in the prefrontal cortex.*
Attention is the golden ticket to language, self-regulation, and functioning. Joint attention can be hard to develop at first until we learn the skills to engage it and the bravery to follow it to broaden our worlds. But there’s great news for our unusual brains.
We don’t have a lack of attention. We have an [over]abundance of it! What looks like an attention deficit to a neurotypical observer is a hyper-focused and hyper-aroused ability to pay attention. The trick is that we have to train our extra ability to pay attention. Otherwise we’ll fall prey to constant distractions, anxiety, and depression as we expend enormous energy paying attention to the wrong things.
To train our attention, it helps to weed out the things we don’t need to think about. That brings me to the second part of the Autistic Brain Owner’s Manual: Reduce Cognitive Load.
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This is a candid look at my current week’s planner plus an example from one of my children’s visual schedules. I don’t write out my entire schedule unless the items are variable week to week or unusual events. Writing down completed and upcoming tasks helps me clear my head before I start writing or working on another project.
Cognitive Load is the stuff we have bidding for our attention at the same time. You can lower the number of things you have to pay attention to at the same time by making schedules, lists, and using a calendar. Here’s how to put these 3 tools into practice.
Visual Schedules. For kids or any of us who feel like we could use one, we make a set of pictures or drawings or labels in the order they occur that we post in a place we’re sure to see it easily. That shows us in one page what our daily pattern looks like, so we don’t have to keep paying attention to it. We don’t have to remember every part of the daily sequence of events. All we have to remember is to go look at the schedule. Because the schedule is just pictures, it keeps us from paying attention to every little thing coming up.
Lists. These don’t have to be fancy, but I recommend that they be in a bound notebook to prevent losing them easily. If you have several things to do for your job, personal work, school, homelife, or to meet relationship goals, write them out on a list. I find it easiest to make the lists down a page with one item per line or in two columns, with new items marked with – dash – marks. People who already have high executive skills will usually overcomplicate the idea of a list. That draws our over-abundance of attention in multiple directions, which defeats the purpose of a list. I don’t recommend the endless subcategories that you can find in various systems for sale for this reason. A simple list of things to do, whether or not it’s in order of importance, lets you pay attention to one thing on the list at a time. You put a big check mark by the items as you get to them, which eases your anxiety. You know that you finished something, and you will over time spend less of your attention on worrying whether you *can* finish things.
Calendars. Again, there are so many extremely complicated systems for sale, but we don’t need fancy features pulling our attention away from what we want to do. I recommend hanging a wall calendar that you can write on in a central location, where you also keep a permanent marker. This lets you jot down appointments on the dates you’ll need them, and it helps other members of your household to keep up with you without you having to remember to tell them. It can just be a house rule to check the wall calendar. The second calendar you need is a planner. It can be a simple set of pages printed from the web or a planner from the store. The important thing is that it have a monthly and weekly pages. You have a lot of attention, so you will need the weekly calendar pages to help you focus. I love these pages from the Elevate Printables Etsy shop (no affiliation, just appreciation!), but you can find similar pages elsewhere online or in stores. I often make lists on the back of the previous weeks planning pages in my calendar binder, which helps me keep things together. Planners are extremely helpful for offloading daily things AND helping you recall long-term goals. When I’m writing a book, I like to jot down phrases and sources in my planner since it’s usually out and open on my desk.
Remember: Your focus isn’t broken. Your attention isn’t lost. It just needs to be concentrated in order to show itself for the superpower that it is. By using visual schedules, lists, and calendars, you can start to reduce your cognitive load and draw your focus back towards the things that matter to you.
Please share your favorite ways to reduce cognitive load in the comments!
Follow my Facebook page for live videos demonstrating how I put the Autistic Brain Owner’s Manual tips into use in my life. Make sure to follow this blog so you don’t miss a post!
May 15, 2018
Autistic Brain Owner’s Manual 1: Make Yourself At Home
When we think of physical impairments and disabilities, we assume that the home environment needs to be altered to remove handicaps for daily living. The same is true for neurodivergences like autism.
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You will be able to self-regulate best when your home environment supports the sensory input you need for balance. That’s why the first section of your brain’s owner’s manual is to Make Yourself at Home.
I’ve written before about sensory diets, and I will post a fuller guide to an Autism Accessible Home soon. But for the purposes of getting a handle on your brain’s needs, here are the most important areas to address to give yourself (and/or your family members) the best opportunities for self-regulation:
Movement. Whether you choose to have an over-the-door swing, a room swing, a yard swing, a pull-up bar, a Swedish ladder, an old-fashioned water bed, a rocking chair, an exercise ball, a balance board, or any combination of those, you will need to fill your body’s need for soothing movements in order to allow the parts of your brain to build the best connections and to coordinate well.
Lighting. You’ll need to find the lighting levels you prefer for different needs (exciting or relaxing) and be able to adjust them according to the time of day and your needs. Here are some ways to regulate lighting: Lamps, warm spectrum or full-spectrum light bulbs, dimmer switches, color and brightness adjustable LED rope lights, fairy (Christmas) lights, photo lamp kits, bubble lamps, lava lamps, candles, glow sticks, glow in the dark paint, fiber optic lamps, sunglasses, rose colored glasses, stained glass, sheers, blackout curtains.
Deep Pressure. This type of pressure gives your joints and fascia input that helps you feel centered and safe. Here are some of the ways to get the deep pressure you need: weighted blankets, heavy backpacks, weighted lap pads, weighted vests, sitting between couch cushions, bean bag chairs, jumping into bean bags or crash pads, hugs, therapeutic deep pressure such as shoulder and joint compressions, trampolines, exercise bands, having a dog or cat on your legs or lap, holding books on your lap, heavy quilts or blankets or pillows over legs or feet, body socks, lying on your belly, doing push ups, leg lifts, and other calisthenics, pushing yourself around on a floor scooter, soaking in a deep bath, swimming.
Touch. Tactile input can help us to learn a lot about our environment, but it can also be very overwhelming. Soft fabrics, especially natural fabrics, are often more pleasant for autistics to touch. I recommend removing tags as soon as you have made sure that new clothing fits well and that you’ll keep it. For the home, sheepskin rugs, silk pillow covers, velvet or velour pillow covers, and corduroy items can add textural input without costing too much. It’s very important that autistic people be allowed truly designated personal space where they can let down their guard and focus all of their attention without unpredictable touch. (More on attention in Thursday’s post.) Some autistic people seek touch, and some largely avoid it. Self-regulation is the goal, whichever direction one’s preferences lie, so safe, predictable spaces are important. If separate rooms aren’t an option, cubby-like spaces such as indoor tents, the space under loft beds, and wingback chairs can give the needed cocoons that regulate touch.
Sound. It’s important not to send sound-sensitive people into shutdown or meltdown modes by overwhelming them with loud, sudden, or annoying sound. Several members of my autistic family are sound sensitive. We have a central rack of noise-cancelling earmuffs in our house, and each of us uses them at least once a week. I also like to institute a quiet classical music part of each day where other background noise is muted or minimized. White noise such as recordings of the ocean can also be soothing, especially at night. If you cannot control the ambient noise level in your home, you can lower your exposure to it using earmuffs and white noise or quiet, relaxing music.
Safety. Along with the other areas, a sense of safety is vital for self-regulation. This can be as simple as making sure that you have locking doors and as complex as learning to de-escalate emotional responses to lower the tension in relationships. Safety also requires that bodily and emotional boundaries are in place and respected by everyone in the household. Some of the ways we stay safe are with deadbolts on our outside doors to prevent intrusions and eloping, combination locks on our backyard gates to prevent eloping (we have a nonverbal 4 year old who has not developed a sense of danger yet and who elopes). We keep the keys to the deadbolts out of reach of the doors, high up on the walls, and accessible to the adults and oldest child in the house in case of emergencies. We teach bodily and relational boundaries from infancy, and we make sure that everyone in the family knows that surprises are ok, but secrets are not ok. We have also made a point to visit our neighbors and give them contact cards with the photo of our son who elopes, so that we’re not the only family looking out for him just in case he elopes. The cards read AUTISM ALERT and include his photo and name, our names and phones and locations, and, “If you find me wandering…” instructions. If you’re an adult with autism, safety can also include having someone to contact every day via text or private message or phone call or in person, so that you have someone looking out for you, too.
I will go into more detail and provide a customizable checklist in my free Autism Accessible Home guide, coming soon to this site. In the meantime, share in comments how you arrange your home to help regulate your sensory needs.
Make sure to follow this blog to see the entire series on the Autistic Brain Owner’s Manual. Follow my Facebook page for live videos demonstrating how I put these tips into practice in our autistic family life.
May 10, 2018
Patron Saints of Autism
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}.
April 20, 2018
When the Wine Runs Out: Marriage in a Special Needs Family
Our family prayer corner is filled with gilded handwritten icons that catch the eye, but today I want to talk about a small icon that hangs in the living room near our dining/library table. Its blue background settles in with the deep teal-blue of our walls, and you might miss it if you don’t know it’s there. It’s a holy icon of The Wedding at Cana.
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Most Christians are familiar with the story depicted. Jesus and his mother are at a wedding when the wine runs out. His mother tells the servants to do whatever they ask. He tells them to fill up 6 big stone water jars and draw some out for the steward of the feast. When they do, it’s not just wine, but the best wine ever. The steward gives the groom a talking-to about how you’re supposed to serve the good wine first before everyone gets drunk. This miracle is the first one in Jesus’ public ministry.
This is not a post about drinking wine. I’m fed up with the wine advertisements masquerading as life advice that come at mothers in a steady stream. Alcoholism is promoted as a social skill these days, if the ubiquitous sad jokes about mothers needing to drink lots of wine each day are to be taken at face value. But getting drunk is not the stuff of human love or flourishing or a basis for sturdy marriages.
This post is about being completely tapped out.
When you have a family with special needs, all the reserves you thought would be plenty are exhausted just when the party gets going. Your time, money, social energy, space, and focus are emptied out. You empty them out on purpose, and you empty yourself out on purpose, for your kids and your family. But that leaves you reaching for the shared cup of celebration without anything to fill it.
Marriages work when we choose each other and attend to each other daily, and they also work when we have presence, focus, energy, time, and space to show that love. When those things run out, what then?
Then we need Jesus to come and give us the good wine.
This is not a post giving you a to-do list that’s impossible to meet. You don’t need weekly date nights you can’t afford (and who can you trust to keep your kids from running away?) or weekends away that would spiral your kids into a month of dysfunction, or a cleaning service, or more money to magically appear. Those things are all nice, but some of them are out of reach or out of your control. What’s in your control is the realization that you are out of wine and the request for help from Jesus.
When I am empty of my carefully prepared emotional regulation, my reserves of quiet and patience, my desire to have someone near my face, my ability to make and communicate a decision, my desire to speak, my ability to talk without being pedantic –my skills, in short–, it is THEN that God can bring the good wine. That’s when the unconditional love for one another, the humble presence with each other, can truly shine.
His strength is made perfect in weakness. ~2 Corinthians 12:9
We might already be drunk on the joys and weariness of child-rearing and managing ourselves, but the good wine comes to give us a sober and clear mind and unblurred vision. It comes to make our hearts – the noetic centers – merry. Marriage is not best known in the conditions that we often think we’re meeting when we enter it. It’s best known when we go together to God with empty cups and open hands and ask God to give us joy with one another in the gift of unconditional love.
We’re often taught in shows and magazines to see marriage as transactional, and our broader culture makes the case for that view of marriage. It’s easy to watch expensive weddings and divorces and to think that it’s often based on meeting or failing to meet expectations.
But the Church teaches a different way, where humans are bound not by the desire for use of the other, but by desire for the fruitful and God-bearing humility that comes in sharing life with each other. Marriage is bearing witness. Marriage in the Church makes the bold and counter-cultural claim that two persons can love unconditionally, that mercy will triumph over judgment in this household, that a man and a woman will lay aside their desire to have power in order to empty themselves so that they may know God together.
So what does all of this mean in the trenches? Why is the Wedding at Cana encouraging when I haven’t slept more than 4 hours for weeks, or when no one likes the food we put on the table, or when the grownups are so tired of hearing whining that they’re biting their tongues not to holler? How can it bridge the gap between a husband and wife when neither of them got to their chores that day, and the little one finally ended his meltdown at 1am?
If you will look at him or her and say, “The wine has run out,” it’s as though you’re saying, “I am not blaming you for your weakness, and I hope you will forgive mine, too.” They will look at you and hold your hand in front of the icons, and you will turn your weary faces and embarrassed eyes toward the Lord. Together, you will tell Him that you’ve run out of wine. You didn’t get your child’s attention that day, or you were injured by playing with them. You don’t know if this one will learn to spell, and you hope that one will eat something besides pretzels. You wish you could lay your head on your husband’s chest and rest in quiet, but the kids will be up in 5 hours. He wishes he could take the burden from you, but his burdens are also overwhelming him. You empty yourselves there in the silence or the soft-spoken prayer or the music until you have offered every empty jar to the Lord.
Then comes the good wine.
April 18, 2018
Always Converting
A few months before we converted to the Greek Orthodox Church, I had a dream. In dreams, persons are houses, and this house was my own soul. I had smoothed the walls of the main rooms so that they could be written with holy icons.
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I see this icon of the Theotokos of the Sign when I sit at my desk to write.
I watched through my own eyes and the double-vision distance that dreams give as I tried again and again to draw a holy figure on the walls with a little piece of charcoal. I prayed and worked diligently and brought my family in to see my work and rejoice with me.
All that was on the walls were scribbles. The lines I had thought would show the visage of saints ready to be filled with light and color, were jumbles and tangles. I wept and lowered my head. On the ground under the wall were broken charcoals I had dropped.
In sadness, I went to the far wall to try again. This time I knew that I was, to put it generously, a terrible artist. I asked God for help again, and I lifted my charcoal. This time, I saw even as I wrote that the lines were scribbles. I said, “Help,” and suddenly, as though the colors were blooming outward from that wall and from the failed strength of my very best effort, an icon of the Theotokos of the Sign filled the wall, filled the world with light and color, and filled me with joy. I woke up laughing.
I share this now as I have been contemplating the question of conversion. When I began to study church history, I read about the conversion of famous leaders: Saul who became Paul, Augustine the erstwhile Platonist who became St. Augustine, Bishop of Hippo, Constantine the power scrambler who became St. Constantine the Great. I read less at first about the great missionary saints whose humble love led to the conversion of thousands and hundreds of thousands, but in time, those stories formed my imagination, too. In the usual tendency to oversimplify, conversion was distilled into a moment: a great light and voice on the road to Damascus, the voice of a child singing, “Take up and read,” the sign of Christ that ensured victory at the Milvian bridge.
The sudden, one-time conversion is a narrative that suits movies and soundbytes and a culture that tidies its religious observations away after each meal. But like a household whose members prepare and gather and disperse several times each day, every day, the true nature of conversion is ongoing, daily, and integral to life itself.
After the first, dramatic outlines of conversion are understood, the person who wants to live a life with God finds the true pattern of conversion. Its hallmark is that it is ongoing. It’s the ever-becoming more like God that we can trace both in what we choose and what we lay aside. Conversion is what happens every day when you desire the gift of true repentance.
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The signs of conversion are the dust that gathers on stories that took us captive rather than set us free, the grass that has grown over the paths we once used to run toward our own downfall. You see conversion also in the lullaby and the hug and the preparations for a gathering of friends or hours spent in the careful and prayerful choosing of words. It is the spoon to lips hoping for fire, the kneeling to receive mercy under the hem of God’s robe that fills the temple with glory. The whole earth is filled with God’s glory. We lift up our hearts to be filled with that glory like a baby bird lifts its head and waits for its food.
The measure of converting is not where a person starts, but where they’re headed. Conversion never stops because the outpouring of love all around us never ends.
“For His mercy endures forever. Alleluia.”
