From Eden's Dirt

Hope through despair. Faith through fear.

Category: Uncategorized

In Dreams I Rise

(a poem)

In dreams I rise.

Not fly. Not soar.

Just rise.

Suddenly, magically,

By no effort of my own,

I am taken up. Weightless.

But I can still see the ground.

I float out of a busy church,

Then down a city street, three stories up.

No one sees. No one cares.

Their lives continue on the ground,

But I am free.

In the sky I am never weary.

I don’t need to analyze every thought or feeling.

There is no need to think of sorrows,

Of imperfect relationships,

Of pain.

When I float I have no fear of dementia,

Or addiction, or mental illness.

I am alone in the sky; there is no expectation of sanity.

In rising my muscles will never grow sore,

My head won’t ache, I won’t grow dizzy.

I will never wake up in the dark, scared and upset,

Coated in sweat like paint, yet frozen in a coldness that comes from fear.

There’s no need for sleep in the sky.

On earth I am heavy, hurt, weak, and afraid.

When I rise I am carried in graceful hands.

On the ground I toil, carrying my burdens in my mind and body.

I carry rocks for people who can’t carry their own,

And the fight, and the weight of expectations and responsibility grind me slowly and painfully into the ground.

Gravity itself is my sorrow.

The sky, you see, is where I belong,

And my cells are homesick.

Someday I will rise and never come down.

Until then I will walk.

Written by Melanie Makovsky

Photos by Bryan Minear, Ankush Minda, Palash Jain, and Alessio Lin.

My Snowy Day

Have you ever read The Snowy Day by Ezra Jack Keats? It’s a beautiful picture book that I loved reading to my children when they were younger. In all of Keats’ books, both the art and the story reflect the joy and wonder of childhood in their simplicity, while also showing the struggle that a child must navigate as he begins to encounter his own need to adjust emotionally to the world’s imperfections.

In The Snowy Day, a little boy named Peter is overjoyed to wake up to find a deep covering of snow blanketing his urban neighborhood. As you might suspect, he is immediately drawn to the magic of the snow, running out into its depths in his little red snowsuit. He plays alone, performing the little scientific experiments that young children use so openly as they explore their world. He whacks a snow-covered tree with a stick until a pile of snow falls onto his head. He makes footprints in patterns. And, of course, he rolls snowballs.

Yet, after some time, Peter grows tired of his games and uncomfortable in the cold, and wants to go back to his warm home. Yet the snow is precious and new and fun, and he doesn’t want to leave it either. In his dilemma, he decides to roll a small snowball, just big enough to fit in his coat pocket, and then he goes inside. After a warm bath, however, Peter is dismayed to find that his snowball has disappeared, leaving only a wet coat pocket behind.

This weekend, by the grace of God and my husband, Eric, I am spending time alone at a retreat center located near the beach in San Diego. (I’m not going to tell you where exactly. This place is my secret piece of heaven, and I don’t want to share.) I’m here to rest, read, pray, and recharge my batteries, and I get to be here all the way until Monday. This, to me, is the ultimate measure of selfcare, not quite a vacation, but an indulgence in my own inner world, with time to fill only with the things that feed my soul. But the hard part, the damper on my private party, is that, on Monday, I will, in fact, go home.

I came here once before not quite two years ago, and it was one of the best things I’d ever done for myself. Solo retreats are an amazing way to get in touch with God and listen to the leading of the Holy Spirit, and the idea is that, after my God-and-me honeymoon, I can return home with a fresh outlook and a cleansed spirit. And, after my last visit here, that did happen. But my launch back into reality didn’t feel too good after my return home. I pulled in the driveway with an indescribable peace in my heart, and I was anxious to embrace my kids and my husband, to give them the new, best self that I’d uncovered. Then I opened the front door.

All three kids and my husband were home, and all 3 were in full, energetic swing. My elder son had an appointment that day to tour a meterological station in partial fulfillment of a Boy Scout merit badge. When I walked in, he needed to be there in ten minutes, and the station was twenty minutes away. Eric was trying to help him focus on what he needed to wear and bring along, as well as the types of questions he should ask, and in the midst of this my younger son was playing, chattering, and requesting attention. My daughter, who attended an online middle school at the time, was using her school-issued computer, struggling to complete her work in all the commotion. I was dismayed to say the least. All of this was (is) just a typical day in our crazy family life, but after my three days in solitude, the impact of this uproar on my sensory systems was overwhelming. I was able to greet everyone with hugs and kisses and listen to their reports of events that happened while I was gone, but within a few hours, my mind and body shut down. I ended up in bed with a multi-day migraine.

As I sit here again now, the discomfort of that reunion and the frustration I felt toward myself and toward my normal life sits in my mind, and I know I want to avoid that shock on Monday. But I don’t know how to translate the peace and tranquility I experience in this environment into the everyday life I lead. My precious snowball of solitude and quiet can only survive under the right conditions. When I take it out of its natural environment, it will melt. Like Peter, all I’ll have left is a wet pocket.

Learning to balance caring for others, caring for myself, growing my relationship with God and allowing Him to determine the values I will live out, and trying to enjoy the whole process is a never-ending balancing act. I am constantly questioning where and when one of these priorities should stop and another should begin. Ultimately I should be living them all out simultaneously, and certainly I am, but the time factor eludes me. When I need to practice my care for others, should I be sitting down, playing a game or having a talk with my kids? Going on a date with my husband? Keeping my house clean? Cooking a favorite meal? Planning and executing a family outing? Am I really caring for them if I’m cooking a meal and they’re in the other room? Since I’m pretty much the only one in the house who likes things clean and organized, is sweeping the floor an act of caring for my family, or caring for myself? When I’m feeling tired, sick, or resentful, should I continue sweeping the floor because I love them, or should I take a break? Is it too self-indulgent to take a 3 hour nap on Sunday afternoon? Is Eric out there in the living room thinking I’m lazy and growing resentful because I’m napping and he’s not? I definitely see the wisdom in putting on my own self care oxygen mask first before helping others, but I never seem to get enough air. Perhaps if I stopped overthinking it all I could breathe more deeply.

Like Peter, I want to keep my snowball. Having just the snowball isn’t quite as great as having all the snow, but keeping it means that I have a piece of that joy to hold onto any time I want. But, just as Peter wasn’t able to keep the snowball from melting in the warmth of his house, I can’t seem to carry the warmth and peace that I receive in solitude into my active life and my relationships. It disintegrates.

I want to know the secret to keeping the snowball. I want my self care practices to enhance and give depth and meaning to my work and my relationships. Instead I feel like the busyness of life too quickly drains my supply of inner peace.

For now, though, I will stop worrying about how to hang onto the snowball. For the next three days, I’ll just enjoy the snow.

Photo by Aaron Burden. Pictures by Ezra Jack Keats.

Essentials of Self Care: Own Your Time

This is the third installment in my Essentials of Self Care series. To view the earlier installments, choose a link:

Essentials of Self Care: Sleep

Essentials of Self Care: Breathe

I’ve written a lot about self care in the past. It’s important to me because I want others to know what I didn’t. I believe that one of the reasons I now suffer from chronic illnesses, mental and physical, is that I didn’t make time for self care in my earlier years as an adult, and especially after I became a mother. It wasn’t until I developed chronic migraines and other pain that anyone told me that self care needed to be more than remembering to eat right, brush my teeth, and take a shower once in a while.

In the fall of 2016, after several months of extreme anxiety, constant head and muscle pain, dizziness, and nausea, I saw my current primary care doctor for the first time. She asked me about my life, and the first thing I told her was that I was the at-home mother of two teens with autism. I didn’t get to tell her any more. She stopped me, saying, “No wonder you have migraines. I think all of this is happening because of constant stress and anxiety. Your body can’t manage it anymore.” I don’t tell you this here to make the claim that all chronic illness and pain is a result of stress. But stress is a big complicating factor, and it seems like so many people, myself included, feel stressed, but don’t feel like they have the time to relieve it. It’s not that I don’t want stress relief, it’s that any time that I spend caring for myself is time that I don’t spend doing something else that’s important. Like so many other women, I put my own needs last.

Self Portrait

I made changes after that, but I’ve come to the conclusion that, while self care allows me to cope with and enjoy my life, it’s too late for me to be completely healthy again. God may work a miracle for me, and I pray for one often. I am not discounting His desire and ability to make me well. But accepting that my body is tired helps me feel like my self care is worthwhile.

I don’t want others to get to this point where I am. I’m 37 right now, but I often joke that it feels like 87. I’m tired to the point of exhaustion almost all the time; in fact, if I don’t feel tired I tend to worry about what might be wrong. I take 10 pills every morning. While many other women are in much worse condition, I can emphatically tell you that I regret not allowing myself the time for proper self care, especially the kind that provides a release from tension and anxiety.

Here’s What I Wish I’d Known:

You own your time. Every hour of every day in this comparably short life is yours to invest. God has entrusted us with years of life here, and those years are made up of hours. I may be stating the obvious here, but this is something I didn’t know, or chose to ignore, for most of my adult life, and especially after I had children. But I chose that. Or it could be said that I chose not to own my time, allowing all the things around me to own it instead, and in my mind, I had no choice but to be dragged along behind the flow of my own life.

But there are 3 things you can accept and act on if you’re going to make the minutes of your life purposeful and healthy.

Time will pass whether you’re mindfully living your life by faith or allowing the flow to sweep you where it will. In Ecclesiastes, Solomon writes, “All the streams flow to the sea, yet the sea is never full; to the place where the streams flow, there they flow again.” Don’t get caught in the cycle of the tides. Instead, try this:

1. Know your values.

If you can’t clearly define what you value, chances are you aren’t valuing those things. Our values are what shape us, and without them, our efforts are futile, or at least misplaced (Ecclesiastes 2:21).

Spend time in thought, prayer, and meditation, asking God to show you what is most valuable to you and what putting these things first would look like in your life. Give this time. I suggest several days of thought and prayer. When you feel like you know your answer, write down 3-5 values that God is calling you to live your life by. It may help to post this list somewhere where you will see it often.

2. Examine your current investments.

Take out your planner, datebook, Google Calendar, or whatever you use to keep track of your personal schedule. Page backwards. What did you spend most of your time on over the last days, weeks, and months? What values do these things convey? Think about the things you don’t write down as well — sleep, meals and meal preparation, self care, child care, carpools, and commutes. Where is your time going? Do most of your activities accurately reflect your values, or does your calendar represent your preoccupations?

Come up with a way to ensure that the majority of your time is used doing things that contribute to and build upon your values and the things you most love.



3. Leave a margin.

Even when you’ve adjusted your schedule and your lifestyle to properly invest in what you most value, it’s essential to plan for down time. It sounds a bit paradoxical, but if you fill every hour of your time and don’t leave plenty of blank space in your life, you’ll burn out. Leaving margin in your schedule allows a space for the unexpected, whether that ends up being taking your kids out for pizza or sitting in unexpected traffic. Down time is also a great way to ensure that you can invest in self care when you need it most.

God calls us all to intentionally live in a way that reflects His love to others, and also to ourselves. You may believe that certain actions are valuable, and are what God intends for your life, but if your day-to-day activities don’t reflect that, it means that you’re putting other things ahead of them. Just as important, if you’re spending all of your time chasing after what you value, and none of it caring for yourself and enjoying what you already have, you’ve missed the point.

Allow God to show you where He wants you to invest your precious energy, and when He wants you to rest and recharge. He doesn’t call us to a life of endless toil and striving. He calls us to a life of peace.

Photos by Kristopher Roller, Daoudi Aissa, Mikito Tateisi, and Milada Vigerova via Unsplash.

“In Any and All Circumstances: Beth March, Bungee Jumping, and Finding Contentment”

I haven’t written any posts in quite a while, and it wasn’t a planned break. It wasn’t anything traumatic that stopped me, or perhaps, depending on the perspective I take, it was a whole season of trauma. I am always full of contradiction.

Sometimes I tell people it’s all physical. I tell them that my emotions are currently unbalanced because my hormones are currently unbalanced. Other times I say that that my hormones are unbalanced and I experience varying types of chronic pain because of my emotions; I have a genetic predisposition to depression and anxiety, that, when coupled with many traumatic experiences interspersed across my lifespan, created a recipe for a body and mind that are more decrepit than the number of my years would normally determine.

But in my own private thoughts, I am dying.

Before I get concerned comments and emails, I am not revealing a cancer diagnosis or a death sentence or a desire to commit suicide. There is still no medical diagnosis, root cause, or overarching explanation for the pain I experience, mentally and physically. That’s what offers me the opportunity to alter my description of my physical and mental insufficiency. There is no name for this, and that seems to lend itself to a certain amount of poetic license.

A few months ago I found an old, tattered copy of Little Women. It was a relic I’d saved from childhood that came from a thick plastic zipper-bag one year for Christmas, ordered by my mother from my Scholastic Book Order. I received it along with many other childhood treasures, most of which were more precious to me than Little Women. Heidi and The Secret Garden and Anne of Green Gables are all still around somewhere too, and these three each experienced multiple readings over only a few years’ time. But Meg, Jo, Beth, and Amy sat on my bookshelf for a number of years before I had the courage to pick it up, and even then I’m not sure that I finished it. Coming-of-age stories were always a favorite, but I had a hard time relating to any of the four sisters, and the length of the book itself was daunting. Yet I understood its value enough to keep it.

When I found it again a few months ago I was eager to read it, and I did. I stayed up late to find out if Meg’s marriage would survive, despite realizing that Alcott’s perspective was way too optimistic for it not to. I grew frustrated with Amy’s selfishness and materialism, rolling my eyes at her as if she were my own sister. And of course I skipped ahead to see whether Jo and Laurie would end up together. What surprised me most, however, was that, at 37 years old, I did feel a connection with one of these young girls, even though she was perhaps the youngest at heart. I began to feel like Beth.

While the other sisters grow and change, Beth seems frozen in time, growing in knowledge and character, but not in ambition or striving. She’s happy to learn the womanly arts designated to her sex and rarely complains, but also shows great talent at various artistic endeavors, especially music. She never seems childish, yet plays with dolls well into her upper teenaged years, when her sisters are “coming out.” What I related to, however, was her illness. I couldn’t put a finger on why I felt such affection for her until late in the story, when she finally confesses to Jo that, even without an obvious medical condition, she knows that she will soon die. In her own words, she tells her sister that she has never had the desire or the willingness to look toward the future that the other three were now welcoming, that she felt no need to seek a husband or even to venture much beyond the house, because in some way, whether she chose to acknowledge it or not, she has always known that she would die while she was young. And soon after this talk with Jo, she does so, with no regrets, and with contentment of knowing that she is on her way to meet her Savior.

I’m 37, so I’m almost 20 years older than sweet Beth is at the time of her death, but I admire her contentment. I relate to Beth because I feel older than my years, and because I often find myself living under the assumption that my life will be shorter than average. There is a real logical explanation for this. Members of my father’s family carry (and carried) a genetic mutation that causes Early Onset Alzheimers. Like the more commonly known form of Alzheimers Disease, EOAD involves a gradual deterioration of the brain over time which results in the gradual loss of memory and ability, eventually disabling the immune system in a way that generally leads to death. Like the common form of Alzheimers, EOAD shortens the patient’s lifespan. Unlike the common form of Alzheimers, however, EOAD isn’t something that affects the elderly only. “Early Onset” means exactly what it says. People can get it in their 30s, and it’s aggressive, and fast.

Most of the members of my father’s family had symptoms beginning in their late 40s and were diagnosed around age 50. All of them were dead before they turned 60.

I’m not great at math, but that means that if I am a carrier of this gene mutation, I am now well past halfway through my life, and I may only have about one decade left before I begin my decline. Or I could even have Alzheimers Disease now.

I’ve had MRIs of my brain, and the various doctors that I see are aware of my propensity to develop AD. I am involved in a widespread scientific study of the disease that includes genetic counseling. I have not yet chosen to find out whether or not I have the problematic gene mutation. I want to know, but I’m scared. It’s been almost a year since I first met with a genetic counselor, and at that time I told her that I would probably follow through with the test as soon as I was ready. But every time I think I’m ready, I’m not. When I think about having this blood test done, I imagine myself like a bungee jumper standing on the edge of a platform, ready to jump. The platform is small, and there’s a lot of falling to do. But it isn’t the fall itself that’s risky for me.

The difference between me and the bungee jumper is that, until I jump, I don’t know whether or not I’ll come back up.

Saying goodbye to 2018 this week was a relief for me, because this has been a year of weariness. Weary was the word of the year for me. I am weary of my health problems, weary of worrying about them and about how much worse they may be. I am weary of my children’s struggles with autism, ADHD, anger, and depression. I am weary of listening to them argue. I am weary of feeling chronically and interminably tired. And I’m really weary of Fortnite dances.

I’m aware that turning the page on the calendar doesn’t mean any of this will go away. Fortnite dances, it seems, are a way of life now, and it certainly doesn’t do anything about my genetic status. But what it can change, if I act on it, is my perspective on my life. I am weary, yes, and that’s OK, it’s even understandable. But my complaint about my kids’ obsession with Fortnite applies to me too. My attention is in the wrong place. I am focused on my end game, on my misfortune, on counting the years I have left. I am focused on my tiredness and my inability to fix my kids’ problems or make them easier to handle.

Instead I need to focus on today, on January, on 2019. I need to see what I have and want it, and realize that what I don’t have I don’t want. I need to stop counting what I have left and start counting the days I’ve had, the blessings my Heavenly Father has rained down upon me. I need to stop allowing my exhaustion to frustrate me and start being thankful and proud of all that I’ve accomplished today.

I need to realize that I am satisfied. There is no need that I have that my God has not already fulfilled. If I believe that there is, then I am only dooming myself to feel that my life and I are totally, incurably inadequate. And if I’m going to die (and I am, whether it be at 37, 57, or 107), that’s not the way I want to feel in the end.

I want to greet God on my knees in praise and thankfulness, not weariness. So this year I’ve chosen Philippians 4:12 as my focus for 2019:

No matter what age I am when my time comes to meet my Savior, I want to know in my mind and my heart that my life was as full as He ordained it to be. I want to learn the secret of being content so that, no matter what the Lord requires of me, I am ready to give it. I want to walk in contentment. Beth March didn’t do that perfectly, and neither will I, but I will at least know that I’m going the right direction.

Photos by Thu Anh, Evan Kirby, Eugenia Maximova, and Eye for Ebony via Unsplash.

Faith is a Verb.

I’m a control freak. I’m 37 years old, and I should know better by now, but in my heart I still believe that if I work hard enough everything will work out exactly the way I want it to. If I scold the kids the right way, take away the video games one more time, spend the right amount of quality time instilling in them my infinite wisdom, and pray really hard, they’ll start to show more respect, do all their homework, and go to bed on time all on their own. And if I see the right doctors, get the right tests, take the right pills, and do the right self care , I’ll be healthy and vibrant and happy, right? Yeah, I know.

I am way too old to believe this crap, but I’m out here hustling like it’s true anyway. Maybe that’s because what I really believe, and what I really fear, is that the opposite is true too. If I don’t use the right kind of discipline, don’t take the right pills, and don’t have the right kind of faith, my life, and I, will fall apart. And that’s when the really scary shit will happen.

Faith in Christ is about believing, not doing. But faith is this nebulous thing I can’t pin down. Telling me to “have faith” when I’m struggling is worse than telling me to just love my kids while they are literally trying to kill each other. What does it even mean?

I can show love, I can feel love, but how do I show or feel faith in a way that actually changes anything? It’s so easy to tell someone to pray, to take one day at a time, and to trust that God will work it all out when you’re not the one taking a suicidal child to the ER. When you are, one day at a time isn’t fast enough.

I’ve been an avid reader of She Reads Truth for about seven years now, almost from the beginning of the ministry. I follow along with their series of Bible passages and daily devotional readings as a matter of course now; they are the key component of my private devotions and quiet time each day. Right now they are featuring a study of Hebrews, and yesterday we arrived at Hebrews 11, the famous “hall of faith” passage. If you’re not familiar with this passage, in it the writer calls faith “the assurance of what is hoped for, the conviction or what is not seen” (Hebrews 11:1). Pretty strong words, and a pretty high calling. But the writer then goes on to offer us proof —

By faith, Abel offered to God a better sacrifice than Cain did, and he was approved” (11:4).

“By faith, Noah built an ark,” saving his family, and mankind (11:7).

“By faith, Abraham set out for a place that was his inheritance,” without actually knowing where that place was (11:8).

And it goes on. Fourteen men and two women make it into God’s list of legends. They’re impressive and awe-inspiring. But yesterday writer Claire Gibson drew my attention beyond the list of names to the verbs:

Abel offered.

Noah built.

Sarah received.

Moses refused.

Rahab welcomed.

I’m a huge fan of verbs. They’re often little words, but they pack a lot of meaning and information. As a writing tutor I often find myself encouraging students to choose active and specific verbs that concisely express the action they’re describing. “Instead of saying, ‘It was a sunny day,'” I tell them, “try saying, ‘The sunshine warmed my skin.'” After all, anyone can say how something was, but when I tell you that the sun warmed my skin, you can feel it too.

Verbs are action. These people in Hebrews, in the “hall of faith,” were people, and they’re not on this list because they have something I don’t. I have faith. But what am I doing with it?

I’m saved by faith (Luke 7:50), but what am I doing about that?

Actually, I’m doing a lot about it.

I’m getting my kids up and taking them to school, because I want them to have wisdom (Proverbs 3:13). I’m teaching them about Jesus, because He’s the light of the world (John 8:12). I’m loving my imperfect husband , because we are one flesh (Mark 10:6-9). I’m studying the Bible, because it’s God-breathed (2 Timothy 3:16), and sharing my faith, because Christ called me to (Matthew 28:19-20). I’m caring for my mind and body, because it is the temple of the Holy Spirit (1 Corinthians 6:19). I’m worshipping, because He is worthy of my praise (1 Chronicles 6:23-25).

Don’t make the same mistake I did when I read Hebrews 11. I looked at that list, all those people and what they did because they had faith, and I assumed I just wasn’t among them. They had so much faith, and they risked so much, because they trusted God.

But I do too, and chances are, so do you. I know that I’m doing my best to do the things He calls me to do. I know He calls me to these things because He says so in His Word, and because He encourages me when I pray. And I know I’m doing my best because I’m asking Him to work through me, and it’s His work, not mine, that performs miracles. I don’t need to be intimidated by the “hall of faith” because I’ve been inducted into it too.

By faith, Melanie lives her life as an act of worship. 

If you do too, smile. Relax. Be thankful. You’re doing life God’s way.

What are you doing “by faith”? Comment on this post by filling in the blank below.

By faith, _________________.

From Eden’s Dirt

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My dear followers,

I’m sure you may have noticed the change in the header for the blog, and if you follow me on Facebook you may have noticed that my page there is called Organic Compost. I’ve been praying about a title for my blog for several months now, bouncing around ideas in my mind and questioning if this site needs a title beyond my own name. The truth is, though, that I’m a big fan of names, even for inanimate things. Names give meaning and help me associate a concept with the concrete.

The journey I’m on is one of self discovery and God-discovery. I find life difficult; in fact, lately I am weary. I’m not just tired, and I’m not just busy. When someone asks, “How are you?” weary is the word that comes to mind. I have led and am leading a full life, and that fullness has included the good, the bad, and the ugly. But I’ve made enough trips around the sun now that I’ve noticed something — God doesn’t just let bad things happen to me. God uses those things to show me more of Himself, more of who I am in Christ, and to grow me closer to the unique person He designed me to be.

God uses the bad things to grow me. 

Besides names, I’m also a fan of analogy. Yes, those things we studied to boost our SAT scores. Similes, metaphors. By comparing the unknown to the known, or the conceptual to the concrete, I’m able to understand ideas more clearly and associate those ideas with something I can see and touch. That’s what happens for me in nature. By helping me see my worst moments as opportunities to grow in faith, God reminds me that He grows faith from pain just as He grows apples, zucchinis, and lilies from dirt. He shows me that even as organic matter disintegrates into the ground to provide nutrients that help new plants to grow and flourish, He can take my hurts, my mistakes, my pain, and my sin, and make it new again in a way that blesses me and others.

God can take the dust of Eden and use it to make dry bones rise, deserts bloom, and lions lay down with lambs. He can lead my dirty feet beside still waters, through the valley death, and onto streets of gold. 

I hope you’ll forgive my experimentation with not just the blog title, but with it’s content and with my voice as a writer. If you have any feedback please know that I welcome it wholeheartedly.

I pray that your Sabbath Sunday will bring you a grateful heart and dusty feet.

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Photos by Kyle Ellefson and Juja Han.

3 Ways that Back to School season is Different in an Autism Family

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Sometimes it seems like back to school season is an extended and complicated version of New Year’s Eve. All that changes on New Year’s Eve is the date, but back to school season means new clothes, new shoes, lots of notebooks and pencils, and about 85 glue sticks to donate to the classroom supply.

It’s not quite the same in my family, though. As a mom of two teens with autism I have to think differently, shop differently, and set goals differently. And that’s just the beginning. While my teens deal with many of the same issues that other teens do there are a good number of common teen concerns that don’t come up in our house, and a whole host of others that are pretty unique. Our family’s back to school experience is different in a lot of ways. Here are three examples.

1. “Back to School Fashion” isn’t a thing.

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As a neurotypical teen in the 1990s I anticipated my annual back to school clothes shopping trip like a second Christmas. I couldn’t wait to go to the mall with my grandmother to update my wardrobe with the newest styles. (Jnco jeans, anyone?) But as a mom of teens with autism buying new clothes looks very different. My son and daughter aren’t interested in trendy clothes because for the most part they aren’t concerned with trends. In many ways this makes things easier for me as a parent because I can shop for my kids’ clothing based on need instead of want. While I may take advantage of clothing sales this season to stock up on jeans in the next size up, my kids don’t care what time of year they get them, nor do they want to go along to the store. In our house back to school shopping is a one-woman job, and when I bring home the new jeans I toss them on their beds and remind them to put them away in their closets.

In other ways, though, buying clothes for my teens is a challenge. When I buy new jeans for my thirteen year old son I also need to be sure to remove the old jeans and pants from his room because often he doesn’t realize that they’re two sizes too small and barely long enough to cover his knees, let alone his ankles. Because he also has ADHD he may forget that he has new jeans if he still has a drawer full of the old ones. With my fourteen year old daughter clothes are more complicated. Since women are unfortunately held to a higher standard of appearance than men I have to balance cultural expectations for how a teen girl should look with her own sensory needs, her ability to dress herself, and the kinds of things she likes. Like her brother she isn’t always aware of it when her clothes are too small. Having kids with autism has shown me that much of the language we use as neurotypicals is very vague. Pants that one young woman might think are too small might be perfect to another woman, even if they both wear the same size and have similar body shapes. My daughter might notice that her underwear are uncomfortable, but she may not be able to recognize that it’s because they’ve grown too small. Or she may know they’re too small but not remember to tell me until I see her unabashedly fixing a wedgie in public. I have to remember that she likes cotton pants but not leggings and has trouble fastening back-closing bras. This gets more confusing around the holiday season when well-meaning relatives want to buy my kids clothes as gifts.

2. We don’t always know what school they’re going back to.

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Between my teens’ special needs and my husband’s Navy career my kids change schools a lot. My daughter, who starts high school this year, has attended nine different public schools already, but only two of those changes were due to a physical move for our family. While all kids have their own unique educational needs, the needs of children with autism are often harder for schools to accommodate. The Individuals with Disabilities Education Act (IDEA), which was signed into law in 1990, was designed to ensure that American students with disabilities can still receive a free and appropriate public education (FAPE). But since a diagnosis of autism can cover a wide range of needs and abilities, parents of students with autism and school staff need to work together to evaluate each student’s needs and design an Individualized Education Plan (IEP) to communicate educational goals and methods used to achieve them to all schools staff. Of course a student’s IEP needs to be adjusted regularly as she or he achieves some goals and needs change, and this is where things get complicated.

When a school doesn’t have the right materials or staff to address a student’s changing needs, or when parents and school staff disagree about what those needs are, something needs to change. While parents do have the option to legally contest a school’s decision regarding a child’s needs these appeals can mean a lengthy and potentially costly battle with an uncertain outcome. As a family we’ve found it faster and simpler to move our special needs students to a more accommodating school. For the last two school years we chose to have our autistic teens enrolled in an online school, where they were able to follow a public school curriculum and meet with teachers and classmates online from inside our home. While my son has thrived in this environment we found that for my daughter this specialized school setting widened an already existing gap between her academic and social/emotional abilities. Her ways of interacting with other teens and adults became problematic for her. So this year, at least to start, she may choose to attend our local “brick and mortar” public high school, where the special education services she receives can happen in person. So, yes, that will bring the count up to ten different schools for her in eleven years.

3. We pay more attention to our kids’ social lives at school than their academic lives.

 

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With little exception my teens with autism have generally been able to get good grades and understand the material their teachers present at school. While this isn’t true for all autistic teens, my kids tend to have more difficulty interacting with other students than they do with teachers and textbooks. As a result I pay more attention to when, where, and how my teens interact with peers than I do their grades. Because, unfortunately, my teens have a lot of peers, but few friends. Bullying has been an on-and-off problem throughout their school careers, but a lack of supportive friendships has been a consistent theme, especially once they started middle school. It’s not that I want them to be popular social butterflies, but I can’t be their main source of support forever. I want to know that they can find and maintain good relationships and know whether or not a new friend is a safe, reliable person to spend time with. Right now they’re with me and each other more than anyone else, and I have no need to kick them out of our house when they turn 18. But someday I’ll be gone and they won’t.

In all respects parenting these two amazingly unique people has been a joyful and humbling challenge. There was a time when we thought that all we had to do was find the right combination of school services, doctors, therapists, and parenting methods and then we could simply maintain the course while they figured the rest out on their own. In reality their needs are perpetually moving targets, and while consistency is important in parenting, it’s just as important for us to know when we need to make a change. So every year when back to school season arrives we take the time to mindfully observe how our autistic teens are really doing. While academics and social skills are things we look at with their input, whether or not they’re happy and comfortable is usually the barometer that tells us when change is in the air. So this year as they try on new jeans, new schools, and new friends, my job is to help them find the right fit.

Photos by Steve Harvey, Ben Weber, Austin Pache, and Melissa Askvew via Unsplash.

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