depression – little thoughts

janus (looking forward, looking back)

Posted on 2020-01-012019-12-31 by kristinabean

British Library digitised image from page 384 of "Man, embracing his origin, ... civilization, ... mental and moral faculties. ... Illustrated" — Picture of the two-headed Roman god Janus, from the British Library Flickr

I’m not really that great at looking back or looking forward. I read a lot of C.S. Lewis in my formative years, and I still have his words echoing in the back of my head: Screwtape teaching Wormwood how to enslave men to either the past or future and thus distance them from the present which alone intersects with eternity; the unfallen Queen on Perelandra describing time and circumstance as the waves of the sea into which we plunge as we swim, taking what comes and letting go of what has come before.

Aubade standing in the waves rolling ashore, feet in the water, arms spread wide in the air, with her back to the camera and the sunset before her.

However, it can be helpful to look back and see the path I’ve taken – to see evidence of God’s grace, of answered prayer, of comfort in hardship, of blessing and providence in good times – and be reminded of God’s faithfulness. It can be encouraging to see progress made, or convicting to see unhealthy patterns deepening. Similarly, it can be good to look forward, to make goals and resolutions, so that I can prepare well for the future I hope to build.

This year especially is a bit of a landmark, as not only the old year but the old decade comes to a close. Ten years ago – 2010 – I was single, graduated college, moved out, bought my first car, and began working at the university where I am still employed now – so really, the whole of my adult life so far has taken place in the now-past decade, and even the highlights would take far longer than this post to describe.

One of the major highlights of 2019, however, was finally getting diagnosed with autism and having a reason for all the times I’d felt out of place and two steps behind despite hearing from everyone how smart I was, for all the moments I’d been so overwhelmed by a sound or touch that I couldn’t process anything, for all the weird behaviors (now I know they’re called stims) I’d accumulated over my life, and more. This was reflected on the blog – 4 of my top 5 most popular posts this year were from my Autism Acceptance series in April:

That third post in the list above touches on one of the things I’m most proud about this year, actually: the way I was able to identify the onset of seasonal depression and take steps to counteract it. This is the first Christmas in several years that I have only had minor situational anxiety instead of moderate overarching depression, and I think being prepared made a huge difference. It wasn’t the type of preparation that gets me all anxious about making lists and potentially forgetting things; just a conscious choice to let go, to dig deep, to roll the thoughts away, to take things one step at a time, and to center my life on meditative prayer.

What also helped was a chance, at the beginning of December, to bike significantly more frequently. I started biking in to work 1-2 days a week in November, but in December my hours increased (from 8 to 20 per week!) and I needed to commute 4 days a week. That regular time outside exercising is amazing for mental regulation and emotional health, at least for me! And the reason for the change is also something I’m excited about, both for 2019 and going into 2020: I have the chance to learn bioinformatics and transition over the next 6 months from the genomics wet lab team to the bioinformatics team, which gives me a chance to learn something I’ve been interested in for years and develop skills which will be even more valuable for my career.

Outside of work, I’m looking forward to an opportunity to help develop neurodiverse community and support at my church. The woman who’s been running the special needs children’s ministry wants to reshape it to better reflect acceptance and neurodiversity, multiple people have anonymously asked the pastors about ministries specifically for neurodiverse adults, several pastors across our web of churches are working on formulating a theology of disability, and I’m apparently one of the adults they know of who is neurodiverse. Hopefully they will not ask only me, since neurodiversity is by definition diverse 🙂 But I really appreciate that they care deeply about the whole spectrum of the children of God, that they don’t want to make it something that neurotypical people are doing to or for us without our input or leadership, and that I have a chance to be involved!

With all of that said, I have just a few resolutions for the new year.

First, I resolve to pray every day. Things are just better when this happens, like marriage is better when I actually spend time talking with Paul 😛

Second, I resolve to write on this blog more frequently. My goal is approximately every 3 days – so, 122 posts for the year. I have lots of ideas but often don’t post for reasons that don’t make sense outside of my head, so I’m going to try to let go of my perfectionism and just share my thoughts.

Third, I resolve to read a variety of good books and keep a book log again! That was such a good experience in the past and I really need to get out of my fan fiction rut anyway. (I already have two books on my list and I can’t wait to write about them!)

How about you, readers? Any highlights from the year (or decade)? Anything you’re resolving for the New Year or especially looking forward to? Or conversely, any challenges from the past or apprehension about the future? I always love to read your thoughts.

musings, quotes

o radiant dawn

Posted on 2019-12-21 by kristinabean

O Radiant Dawn, splendor of eternal light, sun of justice:

Come, shine on those who dwell in darkness and the shadow of death.

The image of God as light has always resonated deeply with me. When I was seven years old, I read a book that described the gospel message as Jesus coming into our hearts as light comes into a room when the windows are opened, leaving the darkness with no place to hide, and I still remember how deeply I wanted that light to shine on me. (As far as I can remember, that was the first step on my journey of salvation, the first moment I desired to follow God.) In high school, I loved Psalm 23, despite wanting to like something not quite so well-known, just to roll that phrase over in my mouth and in my head: the valley of the shadow of death – and to know, as the first rounds of depression came, that no valley was too deep, no shadow too heavy, for God’s light to reach me.

I’ve gone through times in my life where it felt like I was walking on a path I could not see, in a world grayed out by swirling mists and darkened by heavy clouds – where the darkness, the lack of clarity and visibility, was a tangible emotional presence. And sometimes it was sorrow at the brokenness of the world, clouding my eyes, and sometimes it was a pattern of sin in my own life, and sometimes the fog was there on its own accord. And every time my spirit cried out – and I am sure the Spirit cried with me, with groans that cannot be uttered – for that light to come, shine on me, dwelling in the darkness, striving to find my way under the shadow of death.

And the Star of Christmas shines out over the earth, from the little stable in Bethlehem, and I lift up my eyes to Him from whom comes my help; and even when I struggle to see the light myself I hold fast to the knowledge that He who has promised is faithful, and that He will come again, as He came before, with the radiance and purity of light shining in to the darkness of despair.

musings

depression and hope in psalm 88

Posted on 2019-11-292019-11-23 by kristinabean

The Psalm for Compline on Fridays (Psalm 88) is one of the darkest in Scripture. The author is in intense agony, holding onto his faith by his fingernails, clinging to a truth he can no longer feel or see clearly.

The exact conditions of his suffering are not revealed; all we know is that he is close to death and feels overwhelmed by the anger of God. “I am reckoned as one in the tomb: I have reached the end of my strength,” he writes, and “imprisoned, I cannot escape; my eyes are sunken with grief.” I have considered, for years, that this psalm of all the Psalms most accurately depicts the anguish of deep depression, as it aligns well with the interplay between faith and mental illness that I have experienced in certain seasons of my life.

Looking at the psalm now, however, I am noticing far more hope buried within it than I had seen before. Even as the psalmist feels alone, abandoned, and rejected – even as he claims that his “one companion is darkness” – still, he is in conversation with God. He has not succumbed to the silence of despair. He protests, he pleads, he questions, he presents a case: so at some level he still trusts God to hear him and to respond. The darkness of his circumstances and the pain within him to not cause him to give up his faith or to turn away from his God; instead, he brings his suffering to his God and proclaims implicitly, even through his complaints, the depth of his faith and the fierce fighting strength of his hope.

Make no mistake, it takes ferocity, determination, and endurance to be able to say with one breath, “Your fury has swept down upon me; your terrors have utterly destroyed me” and with another, “As for me, Lord, I call to you for help: in the morning my prayer comes before you.” It takes hope with deep roots to persist through that kind of suffering. And yet the psalmist holds fast. Even in the darkness, even in the overwhelming flood of his anguish, even though he cannot honestly say that he believes a better time will come and that God will give him the help he desires, he has the strength to continue to cry out to the Lord.

It does not make a person less of a Christian, less a follower of God, to be so surrounded by pain and darkness that they cannot visualize or verbalize the realization of their hope, or proclaim the promises of God in faith. What reveals the hard, true core of their faith is that they hope enough to continue to cry to Him even when it seems that no answer or succor will come.

musings, sqt

{sqt} – spring will come again

Posted on 2019-10-24 by kristinabean

As the seasons fall toward winter, my emotional center falls with them. Even in the midst of good, happy things; even when I feel genuine gratitude for the blessings in my life and joy for the beauty around me; even when I have hope for the future and time spent in prayer – even in all those things, guilt, insecurity, anxiety, and sadness well up within me in this season.

a single stalk of grass fluffy with seeds about to fly

I’m not sure why this is – it could be the drop in temperature, the slowly shortening days, or the impending holidays (which for me really start on Halloween – we don’t have a week without something extra from then through Epiphany, since four of our birthdays are added to the mix).

But at least this year I am aware. I remember the way the wave of depression carried me away last fall, how it caught me unawares and vulnerable, how much I struggled through the next few months as a result, and was unable to lift my head up to see the beauty and feel the wonder and share the joy of Christmas. (I’m really much more of an Advent person – the waiting, the longing, the expectation, the melancholy and sorrow at the brokenness of the world tempered only by the hope of the coming Savior – but I think Heaven is going to be more like Christmas, the fulfillment of hope, the fullness of joy, and I ought to be preparing my heart for that eternal home – )

Looking towards the sky through the changing leaves of the maples

And now – I am being intentional. I am taking time to pray (more than before, but still far short of what I ought, what I need.) I am making time to exercise. I am pacing my efforts with the kids, letting good be good enough instead of demanding perfection from any of us. I am growing green in my garden, the rich riot of life a balm for my soul (yes, our seasons are all different here). I am resting in the beauty and freedom of nature, bringing the kids where they can explore away from the structure and restraints of the city, where we can learn to love the earth we live on, where we can find the secret treasures of the untamed spaces.

Limerick walking along a mountainside trail with a walking stick, like a hobbit journeying through the Shire

These things do not make the struggle go away. They do not lessen the pull of the undertow. But they help give me the strength that I need to keep my head above the water. It is an interesting strength, that I find in these times, through this intentionality, not a strength of fire and sparks, of passion and heat, of bold courage and drawn swords. It is more the strength of the tree, that bends in the face of the wind so that it will not break, that learns to grow sideways to endure the forces against it.

Wild grass, golden in the autumn sunlight, seed heads full and ripe over green stalks

It is even, I hope, more the strength of the grass, that sends down its roots deep into the soil, and its runners far-spread around it, and its seeds to every corner on the wings of the wind: by every means ensuring that when the fire blackens the land it will rise again from the ashes, that when the snow cuts off the sun it can wait for spring to come again.

I’m joining the SQT linkup today even though I don’t actually have seven things, but hey, Kelly is bending the rules too and it’s her blog party so I think it’s ok 🙂 Head over to This Ain’t the Lyceum to join in!

musings

walking by faith: because coping with mental illness is like striving for a virtuous life

Posted on 2019-07-232019-07-20 by kristinabean

When you live with a mental illness, you get a lot of practice at redirecting the pathways of your thoughts. Sometimes it’s as simple as stopping and taking a deep breath when the first hint of an unhelpful emotion or mantra wafts in; other times it takes repeated corrections, minute by minute, guiding your thoughts out of the road they want to travel and into a different pattern.

“He’s angry at me”, my mind says – and I have to force myself to look at the facts of the situation, remember he didn’t sleep well last night, so maybe it makes more sense that he is angry at something else or just tired and not showing positive emotions well.

“I can’t do anything right”, it says again, and I have to list off the things that have gone right in the past hour, no matter how small they are, and put the mistake in perspective: I fed the kids a healthy breakfast, I got a shower, I got everyone to speech therapy on time with activities prepared, and it’s not the end of the world if they only have socks on and their shoes are sitting at home…

“You’ll never be worth anything, they’d all be better off without you”, it repeats, and I have to turn the feelings inside out, repeat what I believe in the core of my being about the innate worth and dignity of the human person, remember the irrational and inexplicable unconditional love of a child, pray for the strength to run my race with endurance as did the saints who suffered and died for their faith, lift up my head like a superhero knocked down but not out once again.

The emotions are harder to deal with, being by nature less specific of a difficulty. Sometimes it seems as if the whole world is covered in a gray mist, blocking out the color and the joy and the reason to try, and all you can do is make your way from one task to the next, drawing on reservoirs of strength you didn’t know you had, waiting for the sun to break through again. Sometimes guilt (or self-loathing, or whatever the word for it is) attacks like a fistful of knives in your brain, and you hold your breath through the mental pain and then, somehow, inhale again and lift your face to the fight once more. Sometimes everything you take in is edged with inexplicable sadness, the inverse of a silver lining, and you embrace the beauty anyway, despite the bittersweet twist in your heart.

And what I’ve been coming to realize, lately, is that this turning away from the easier path into downward mental spirals and unhelpful thought patterns, and this setting of my feet so carefully and unsteadily in new ways of thinking, is really very similar to the process of living a virtuous life. Here is my fear, dissuading me from some act of charity or justice or faithfulness – now I must turn my thoughts aside from that path, from the rationalizing of my cowardice, and take an action I very much do not have the emotional support to make. And in the act, I make it that much easier to choose courageously in the future. There is my anger, snapping out at the people I love, roughening my edges to sharp and jagged lines, giving me hurtful words to hurl – now I must close my mouth, count to ten, pray for peace and gentleness and self-control, try to look through another’s eyes, and eventually even try to speak in kindness and in calm. And in the act – in every time I try, even if I do not entirely succeed – I train my mind and will to not fall so automatically into the pathway of that vice. It’s rather a daunting thought, knowing that I have both sanity and virtue at stake here 😉 – but on the other hand, what practice I will have at it! And with God near at hand with His grace and strength, and the community of saints present to encourage and guide me, I have hope that my practice (in both arenas!) will not be in vain.

musings

struggling with autumn

Posted on 2018-11-122018-11-12 by kristinabean

Autumn used to be my favorite season. It was the slow build towards Christmas – Halloween, my birthday, Thanksgiving, and the final crescendo of Advent, gradually growing excitement and joy with each passing day. It was the flash of defiant color flaming bright against the shortening days and cooling nights. It was the sharp relief of heat breaking like a sudden smile on a stern face. It was the beginning of a new school year with new classes and things to learn and a definite schedule after the chaotic fun of summer. It was apples ripening and pumpkins to be carved and pot pies pulled steaming from the oven. It was russet and gold and amber and deep brown turning all the world the warm rich colors of wooden bookshelves and leather-bound books – nature and library in one.

And I started out this autumn so well, taking the kids up north to try to see the changing leaves, going to local fall festivals, painting with the warm colors of fall, carving pumpkins – and then it all fell apart, in the fading glow of Halloween, as the realities of four birthdays and Thanksgiving and Advent and Christmas coming all hit me. If autumn has always been for me the season of growing anticipation of coming joy, than this year it feels like the season of growing anxiety about coming struggles. I hate that the same beautiful things I once loved, that have always been so special to me, are now mocking me for my inability to fully enjoy and live in them like I used to. I want to make beautiful traditions for my family, to give them the love of all the seasons of the year that I have always had (for all things are beautiful in their own way, or have the potential to be redeemed into beauty), and all I can feel is shame at my inability to do so – or to even see that beauty myself, anymore.

I just can’t wait for it to be over, this year. For the dead and barren branches of winter to take over. For the lights and colors and gifts and effluence of friends and family to be gone, and in the cold January air to be able to take up the tasks of everyday life again without the expectations of the holidays weighing on my shoulders. Beauty is too high a standard to live by, when I’m the one who has to create it in my home. Like a flame-tinged leaf myself, I’m swaying in the strain of the autumn wind and soon I must break and fall – only I can’t let myself and I have to hold on until the wind passes and the still of the winter brings peace.

musings

stimming for joy

Posted on 2018-10-292018-10-27 by kristinabean

I stimmed today, for the pure joy of it.

I shook my hands back and forth like there was a vibrato in my wrists; I made waves through the air like the swirling lines of a dancing ribbon; I watched my fingers sparkle against the sky.

We were at the park; a storm was rolling in and the air was cool and crisp, with a bite to the wind. I was pushing Aubade and Limerick on the swings, feeling like I could fly with them, happy in the weather and the hours we’d been at the park already and the laughter bubbling from them as they swung. I would run towards them as they flew backwards, then dart backwards out of the way just before they could swing forwards and crash into me, and they would laugh so hard they could hardly catch a breath. Aubade would crow, “Three!” and I would push her three times, each one bigger than the last, so the third push would make her erupt with glee. And as the happiness ran through me it ran to my hands, and I chose to let it be instead of shutting it down, and I found as my hands danced in response to my happiness they also made it grow, until I was as completely blissful as I have ever been as far back as I can remember.

Normally, I have my body on some sort of lockdown – I can feel an impulse to move and then before I even have time to process it there is a counter signal to hold still. Normally, the only things that get through this lockdown are the stims that I need to cope with my anxiety or the stims that occur when I’m thinking hard enough about something else that I don’t notice what my body is doing. In other words, I let my body process and express my negative or neutral emotional states (at least to some extent, because I have learned that it is important for my mental health), but I prevent it from feeling my joy.

I’m starting to think, now, that the stimming of my happiness may also be important for my mental health. I have walked the thought paths of depression for so many years, always feeling inadequate, always feeling like I was carrying a nameless secret that would make people reject me if they found out, always shutting down my happiness from reaching my body so that even the moments of the most joy and beauty were tinged with sorrow. But here my body is ready and waiting to give to me the gift of happiness – of taking my happiness and escalating it, elevating it, prolonging it – able to protect me from the darkness of those roads, if only I am willing to let it do so.

I stimmed today, for the pure joy of it. I hope I can feel free and confident enough to do it again.

musings

accepting autism when I want to be normal

Posted on 2018-08-062018-08-06 by kristinabean

I remember the first time I revealed my depression to another person, and the first time I admitted that I had wanted to commit suicide. It’s not an easy thing to be open about; it’s shameful, and dark, and has the potential to hurt the person you’re talking to quite a bit (especially if they knew you when you were going through it and didn’t open up to them until years later). I’ve found a way to accept it as a part of my story and talk about it now, though, and I hope when I talk about it that I can encourage others who experience it. I have a mental illness, I can say, without being ashamed or guilty. I have been in these dark valleys, and heard these poisoned voices, and felt the dank stagnant breath of despair on my face. If you are there, I can say, where hope seems entirely absent and all light is lost, where you are lost in a pathless wilderness and the very thought of finding a way out seems pointless, I have been there too, and I am a witness that it is possible to return to the land of the living.

Autism has been a more difficult name to claim for myself. While I don’t have a medical diagnosis, it’s not doubt about the validity of the label that stops me; I can see every symptom in my autistic son mirrored in myself, I score well above the cutoff for every ASD questionnaire I’ve ever taken, and it’s evident to others to the point that my husband laughed at me when I told him I wasn’t sure if I could be autistic myself.

Instead, I think what makes it difficult for me is the admission, in accepting this diagnosis, that I may struggle with certain things for the rest of my life without a “fix.” That some of the aspects of myself I’ve always hated, some of the traits I’ve never accepted, are part of my neurology that will never go away. I can take a pill to shut out the blackness of my depression; there is no pill that will help me fit in with a group, or know how to move my face the right way when I listening to someone talk, or recognize when a friend is being sarcastic and when they’re being serious. I can go to a therapist to talk through unhelpful thought patterns and try to replace them with healthy and positive ones so that a depressive trigger won’t need to set off a ruminative episode of self-hatred; I can’t go to a therapist to talk away the irritability caused by spending all day with three kids whose normal play and conversation feels like an assault of noise, or the emotional breakdown induced by a last-minute schedule change, or the heights of anxiety scaled every time a new event or social appointment is upcoming. I mean, a therapist could potentially help me find ways to cope with those physical and emotional reactions – but they are still always going to be there.

As we’ve gone through the process of Rondel’s diagnosis and my accompanying self-discovery, I’ve read and read blogs and articles from the #actuallyautistic community – I’ve sought to have my understanding shaped by the words of autistic adults and self-advocates. So I know that autism is just a different wiring, a different way of perceiving the world and being in the world. I know that very often it is social norms and expectations that make autism difficult, not autism itself – that is, the difficulties do not exist because autism is bad, but because it is different in a world not designed to accommodate differences. I love that autism has given me a mind like a database and an unfailing eye for patterns. I think I can give autism some credit for saving me from the girl drama of middle school and high school, for giving me dedicated and focused attention on things of interest and importance to me, for helping me to be an honest and trustworthy person, for developing my (often repetitive) love of books and reading.

But sometimes it is just hard. I don’t want to be a different person, but sometimes I’d love to be part of a conversation without constantly having to evaluate and compare my responses with the responses of the other people involved, without having to laugh at a joke even if I don’t get it at all, without having to guess whether a statement was meant to be funny or sarcastic or not. Sometimes I’d like to be invited when church friends or coworkers have a BBQ or a game night – and sometimes I’d like to receive an invitation with casual nonchalance instead of panicked uncertainty. Sometimes? – I wish I could actually be normal instead of just pretending to try to fit in.

violet_incredibles — “Normal? What does anyone in this family know about normal? […] We act normal, Mom, I want to be normal!” – Violet Parr, *Incredibles*

But maybe it is harder to try to be someone I’m not, and waste my life wishing I were that other, neurotypical, person, than learning to accept and embrace who I am, struggles and all. Maybe it is harder, in the long run, to wear a disguise every day of my life and pretend that I never need help or support. I just know that right now I’m still too scared to take off that mask.

sqt

{sqt} – seven quick thoughts from a quick week

Posted on 2018-07-202018-07-20 by kristinabean

I’m linking up with This Ain’t the Lyceum today – head over and read some more!

I’ve been tapering off my antidepressants over the past month and a half (my doctor recommended trying it after a year, and I waited until warm sunny weather would give me some help), and I think it’s going well! I have noticed some old thought patterns re-emerging, but they aren’t strong and all-consuming, and I’m equipped to process them effectively thanks to therapy. I should be completely off by the end of August, and probably due to my long and slow journey away from them I’ve avoided the unpleasant symptoms one can experience when abruptly messing with one’s serotonin pathways 😉
Aubade had yet another dermatology appointment this week and we finally had good news: it appears that her mysterious rash is gone for now (or at least controlled without continued daily use of heavy steroids), and her skin is healthy. We’ll keep an eye on it in case it was triggered by some allergen or environmental factor that might be an issue again next spring, but at least for now she should be comfortable and unmedicated except for moisturizing cream.
In case anyone else needs allergen-free lotion, we’ve been using Vanicream and I like it a lot. It doesn’t have lanolin in it, which can apparently irritate or trigger some people, and it’s probably all completely artificial, but it has a good feel and has definitely helped Aubade’s rash of mysterious origin.
In non-medical news, I got a new camera!! My old DSLR was 8.5 years old and still working great, but there have been some advances since then 🙂 and it is nice to have the added pixels in the sensor especially in low-light settings. The boys have even posed for a me a few times (or at least, smiled at the camera and then asked to see themselves).
It has been hot here, and humid since we’re in between waves of the monsoon, but we have to get out of the house so we’ve been playing a lot out back with the hose. We’ve rigged things so the hose will spray on the slides and the large wading pool will tuck underneath the slides, so the boys can go up and down the slides endlessly to much splashing underneath the mist.
I’m attempting to babysit two little girls from church a few days a week, Limerick and Aubade’s ages; we had our first afternoon together this week and it went so well (despite my bone-crushing anxiety the night before)! All five kids played together well, in kind of a parallel play sort of way, and there was only one instance of quarreling the entire time. I’m sure it won’t always be that smooth and easy, but it was a good start, and left the boys anticipating the next playdate rather than dreading it. From the other mom’s perspective, it’s a chance for her to work and pay off debt; from my perspective, it’s a chance for my boys to make friends and practice social skills in a low-stress environment, and an opportunity for me to contribute monetarily a bit more to the household. Maybe I wouldn’t care about that so much if I were an excellent homemaker… but I’m really not 😛 In fact it’s tempting to use some of the extra income to pay someone to clean the house every other week or so…
We qualified for ESA funds for Rondel for the year! In Arizona, if a “special needs” student (one who would have an IEP) isn’t enrolled in a public school, they are eligible for a certain amount of money to use for curriculum and therapeutic services. Since we’re homeschooling, we can use some of it for some good books and manipulatives, and since health insurance can be finicky about approving therapy, we can also use it for his speech therapy. It’s not a huge sum of money, but it’s enough to be very helpful with things. The eligibility criteria are very specific, but if you meet them the application process is very simple and straightforward, so I would encourage any homeschooler in Arizona with a developmentally delayed child to look into it.

How has your week been? What do you do to cope with the summer heat? What resources have you found in your state/country to support the needs of differently wired students, especially outside the public education system?

family life, musings

the value of a diagnosis

Posted on 2018-03-19 by kristinabean

As we proceed with Rondel’s diagnosis (since the school district is unable to provide an actual medical diagnosis in their evaluations), we’re using an innovative diagnostic app developed by a local children’s hospital, which involves capturing multiple videos of Rondel’s actions and interactions in specific situations. I like the concept a lot, as it lets the doctors see into Rondel’s everyday life and observe him unnoticed for far longer than would be possible in an office setting! However, as I’m going through the videos to trim and upload them, I keep wondering if the specialists will see the differences that we believe are present – or if they will tell us that his struggles are due to something like poor parenting. Maybe if I were stricter, or reinforced acceptable behaviors more consistently, or provided him with a more stable routine, or cleaned up our diet, or or or or…

…then maybe he would be fine, maybe he would be normal, maybe he would fit in with all the other kids instead of sticking out uncomfortably.

He just isn’t so significantly different that it’s obviously a medical problem to a layperson. His differences are hidden, partially masked, behind his gregariousness and intelligence and creativity, until he’s used up all his energy on coping and he falls apart. So when people see him melting down or acting out, it’s easy for them to assume he is doing so willfully, or to think that he is simply being “spoiled” and “self-centered.” Even I, who see him every day, wonder sometimes if the difference is truly there, all the way down, no matter what, or if I could find some parenting technique that would work better for him and “catch him up” to his peers.

But I wonder that about myself also. Do I fail to maintain relationships or engage in neighborhood community-building because I am selfish, lazy, and don’t care about other people? If I were a better Christian, could I overcome my introversion? Many people do, after all, and are able to make time to recharge themselves. So am I guilty of using my social anxiety as an excuse to cover up for my vices or inadequacies?

Similarly, before I was diagnosed with depression (and honestly sometimes still), I would tell myself that if I just tried harder – if I prayed more, exercised more, ate better, spent more time in self-care, spent more time with close friends, practiced the right mental exercises, etc – I could get through the negative feelings and be fine. Getting the diagnosis was one of the best days of my life, because of what it meant to me: that I wasn’t an awful person taking advantage of the people around me, just a sick person who was trying as hard as possible to find joy and light but needed some extra help.

And my hope is that a diagnosis will be a similar gift to Rondel: a confirmation that his differences are real, and valid, and significant; a reminder that some things will be harder and it will be ok to seek and use help and support; and a shield against the barbs of guilt and shame that always accompany deviations from social and cultural norms. The alternative – refusing to acknowledge and name the neurological differences that give rise to his behavioral differences – is only a recipe for disaster as he grows older and begins to notice his differences without a framework for comprehending and addressing them. How much better to provide him with a framework of informed understanding, acceptance, support, and unconditional love!