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.
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.
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.
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.
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?
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!
One of things I have learned from my depression is that hope, while certainly made easier by pleasant circumstances and positive emotions, is most emphatically a virtue. It is possible to cling to hope with raw and reddened hands, eyes blinded by night and storm, refusing to release that slender line though every fiber of one’s body and every echo in the tempestuous wind is shouting out the futility of holding on.
Hope is not a wish list for Santa Claus, or a fantasy of a perfect airbrushed future. Hope is a conscious choice to endure, a moment-by-moment fight to persevere, a decision to stay the course despite all odds and appearances.
Hope does not aim for a peaceful and indulgent future, where every want is satiated and every inconvenience eradicated: it could not derive its lasting power from such a weak and flimsy foundation. Hope is anchored in the everlasting love of God, looking towards a future in which every pain and sorrow will be redeemed, made beautiful, and given purpose.
Hope impels one’s feet forward through the valley of the shadow of death, to which no end can be seen.
Advent, in focusing our attention on hope, does not attempt to sugarcoat the suffering of the world with carols and cookies, but rather endeavors to give us the strength and the vision to press on through that suffering without giving in to despair or bitterness. With hope, we may be as small and weak as the one isolated candle flame that flickers in the darkness this first week of the season, but we are at the same time enervated by the raging and glorious power of unleashed fire. No icy cold can put out our light so long as our wick reaches deep into the wax that is Christ in us and for us.
In answer to the hope of the world, He came. To give us the hope to endure to the end, He came. In His coming, in the Christmas manger, in the weakness of a newborn baby, is all the strength we need.
This year, for the first time, our family celebrated Michaelmas – a traditional holiday in both the Catholic church and the Waldorf educational philosophy, honoring the angels (the name comes from the angel Michael) and emboldening us to fight against evil in our world and our own hearts.
Michael is often portrayed in religious art as slaying a dragon (representative of Satan), as he is considered to have led the armies of angels against the devil, casting them out of heaven. Going strictly from Biblical texts, there is also Gabriel’s message to Daniel, in which he says that he has been delayed because he was fighting against the demonic powers in Persia and had to have help from Michael to get past that barricade to Daniel. In either case, from the little that is said about the angel Michael it appears that he is a mighty spiritual warrior, and one whose strength comes from God and is without arrogance or pride (the very name Michael means “who is like God?” – signifying rhetorically that no matter how great of a warrior and leader he is, even then he is not like God, not on the same level as God. Michael stands for exactly the opposite of the devil’s error of pride in believing he could actually be like God, an equal in power and worth.)
So for Michaelmas, the celebratory ideas tend to center around this theme of fighting dragons: in a more literal sense for the younger set, and in a more metaphorical sense as well for more application 😉 We didn’t do much; I was going to plan a whole party and invite other families, but I couldn’t get past my social anxiety in time, so it was just us. Fortunately, however, I was able to make a dragon costume for my brother and some quick “swords” for the boys, so they could fight away a dragon in honor of the day (just like Michael! With the power of God! I’m not sure that those connections were made though…)
I made the mask using a template I bought from Wintercroft on Etsy, from card stock, and threw together the cape at the last minute from a curtain left behind by the previous owners of our previous house (I’m a bit of a hoarder when it comes to fabric… but see, you never know when it might be useful!)
The swords were made from pool noodles, cut in thirds; the hilts were felt circles with an X cut in the center for the noodle to slide through.
Rondel jumped into the fray instantly, laughing from the excitement of battle, ferociously attacking the dragon as it roared and advanced and battered him with its scaly wings and fiery breath:
Limerick stood back and observed for a while, but when the dragon disarmed Rondel he began to fight wholeheartedly, keeping the dragon at bay until Rondel came back with a new sword and they could “kill” the dragon together.
(Aubade stayed out of the fray with Grandma… the poor baby was terrified of the dragon mask and screamed out the alarm even when Rondel was bouncing around with it on later.)
As I’ve personally been thinking about the holiday, I’ve been trying to identify the dragons I end up fighting most often. They might not breathe fire and hoard treasure, but they do wreak havoc and destruction on the things that matter most: home, family, and community. The dragons of anxiety and depression try to isolate me from other people and from God with insidious lies; the dragons of impatience and ill-temper try to destroy the relational bridges between me and the people around me. But if I see these things as dragons, it clarifies them in my mind; it gives me something defined to fight against, and a powerful mythic story to illustrate the fight. Like Michael I can throw down my enemy, not because I am so great and mighty, but because there is no one like my God.