Posted in musings

accepting autism when I want to be normal

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.

Posted in musings

this day

some day, I won’t need to calm myself down with deep, measured breaths before making a routine phone call.

some day, I won’t feel insecure about my son’s differences and be afraid to take him places where he might stand out in a negative way

some day, I won’t build walls every time I get the chance to make a friend

some day, I will knock on a neighbor’s door even though it isn’t Halloween

I believe that I can change, and I believe that I will change, in the same way that a tree changes as it mature from a sapling to a giant – shaped by the primal clashing of the environmental forces around it with its own fierce urge to live and grow. I believe this because I have changed before…

this day, I no longer believe that a mistake makes me a failure as a person

this day, I no longer feel that I am personally to blame for every heartache or frustration in the people I love

this day, I advocate for my son the way he is and seek accommodations that will help him learn and grow

this day, I choose to swallow my fears and lean into community despite the challenges and inconveniences and anxieties that come with it

this day, I am stronger and braver and wiser than I was before, and some day I will be stronger and braver and wiser than I am now

what matters is not the speed at which I travel, but the direction of the path I take.

Posted in musings

resurrected imperfection

Then He said to Thomas, “Put your finger here; see My hands. Reach out your hand and put it into My side. Stop doubting and believe.”

– John 20:27

The brief descriptions of the resurrected Jesus are all we have to base our imagery and understanding of our resurrected bodies on. And the picture that appears is somewhat confusing.

Jesus, after His resurrection, could apparently teleport and walk through locked doors – but still was able to eat real food and still even bore on his body the marks of His suffering and death. His body was in some ways changed and in other ways still the same. Was it, then a “perfect” body?

What would a perfect body even be? Would it be defined by some precise weight, or height, or appearance? By some level of functionality or some lack of disability? Would the person born without legs have legs in the resurrection, or the deaf be given hearing? What does that imply for the identity that individuals build for themselves in response to their embodied existence – and what does it imply for the relative worth, here and now, of those whose bodies are farther from that perfect ideal?

As the owner of a decidedly imperfect body, I’ve often thought about what the bodily resurrection would entail for me personally. Would it mean my myopic eyesight would be healed? Or that my thyroid would function correctly – or that things like thyroid hormones would be irrelevant? Would it mean freedom from debilitating depression and anxiety, or are those things a part of my soul as much as my body, a part of my being that can be redeemed and made meaningful but not cut out?

As I mature in my understanding of myself, and as I see how my body and mind affect both each other and my faith, I am starting to think that maybe our “deficiencies”, our brokennesses and scars, will remain with us in the resurrection – at least the ones with meaning and significance to our story and the story of God in the world. Just as Jesus kept the scars of His crucifixion, so maybe the mother will retain her softened abdomen and the scars of childbirth. Maybe I will always have the scars on my arms from my skin excoriation disorder, no longer marks of shame and anxiety, but testimonies to the love and redeeming, healing power of the God who brings beauty out of ashes.

Maybe the new creation, the resurrected body, isn’t perfect any more than our current bodies – and maybe perfection should never have been our goal.

Posted in musings

avoidance-based parenting

I wonder if we all parent the way we do in response to our own internal demons.

The mother who feels lonely and insecure, who desires above all to feel a sense of connection and belonging – maybe she is the mom attracted to attachment parenting, because she hopes to give her baby the feelings of security and unconditional love she longs for herself.

The father who always felt distant from his own parents, who never had a listening ear for his stories and ideas – maybe he is the the dad who gets excited about his children’s hobbies and learns enough about them to engage in meaningful discussion about their activities and interests.

The mother who is constantly driven by shame and perfectionism, who tends toward depression and feelings of inadequacy – maybe she is the mother who parents permissively, attempting to free her children from the heavy emotional burdens she carries.

The father who grew up in an unpredictable and sometimes violent environment, for whom love was an unstable things – maybe he is the father who disciplines his own children harshly to try to maintain the control and order he needs to keep his own painful childhood memories from being triggered.

Probably many people, from both healthy and broken childhoods, parent well through common sense or the mentoring aid of more experienced friends. I don’t really think that we all choose our parenting methods (at least in part) through some desire to avoid passing down our own problems! But it is a struggle for me.

What I am realizing, though, is that it isn’t enough to parent out of an avoidance or fear, any more than it is enough to build one’s own self that way. My therapist showed me the importance of creating a positive image to move towards in my own personal development, and maybe that would be a beneficial exercise in parenting as well. What kind of parent do I truly desire to be? What atmosphere and attitudes do I want to cultivate in my heart and home? What qualities do I want to characterize my interactions with my children?

Not only will answering those questions give me a more defined vision than simply parenting in hopes that my children will not be depressive perfectionists because of me, but it will also give me freedom from the vague feelings of inadequacy and shame that come from never being sure of the goal I’m aiming for. And that can only have good effects on both my life and my parenting!

In the next few weeks, I’m going to try to come up with a positive description of how I want to parent, and if I can I’ll share it here! I may even do a link-up party if anyone else is interested in writing about the topic – just comment here to let me know!

Posted in musings

when mental illness touches a relationship

How do you find the balance between reaching out to help someone in need, someone tortured by their own mind, and distancing yourself from someone who could hurt you either emotionally or physically? How do you determine when to maintain or deepen the relationship and when to sever ties or let time and distance weaken the bonds of former friendship?

On the one hand, you want to say never – never give up, never stop trying, never abandon someone to their inner demons, with a hand to pull them back out of the abyss. You remember who that person is, in their essence, the person you love, the person you would die for, who you never want to lose, and you want that person to come back through the darkness and cobwebs into the fullness of life.

On the other hand, when you see people you love hurt by narcissistic partners, addicted parents, or paranoid friends, you want to tell them to free themselves from the relationship and its accompanying pain. When a coworker’s mother plays her siblings against her and sabotages her relationships with the rest of her family, you want to tell her to just cut those ties and build a new life for herself. When your friend’s sister-in-law overdoses for the last time, you feel almost guiltily glad in the freedom her husband now has in her absence.

And when you know that deep inside you those same demons may be lurking, how do you keep the people you love safe from the hurt you might cause them? When you know that depression might steal from your husband the wife who can face down life’s struggles with him, or from your children the joyful, energetic, patient mother they deserve, is it right to marry and bear children at all? When you know that the voices in your head are luring you to the edge but you can’t make them shut up, when you’re afraid that at any moment you might snap into a self-absorbed burst of energy and plans or spiral into a suicidal darkness of tears and anger and emptiness, how do you protect the people who love you? The ones who keep holding on to that relationship even when it hurts them? They deserve so much more than you can give them.

I’m not going to give up on the people I love, when they need me most and are most difficult to love, and I hope they never give up on me. It is in relationship, in love that endures, that we can find healing and hope, if we seek it – in risking, in failing, in being forgiven and trying again.

Posted in family life, musings

facing thanksgiving with a mood disorder

While the general joy of the holiday season begins to creep upon me beginning with Halloween and my birthday, the anxiety of it doesn’t really start for me until now, in the week between Limerick’s birthday and Thanksgiving. I don’t know if everyone has to fight down panic attacks during the holiday season, or intentionally pursue joy while the black tentacles of depression and apathy are pulling them down; I don’t know if everyone feels trapped between the potential of the season and the expectations for the season, faced with a list of people to visit and chores to complete, wondering where the beauty and the significance went. I would imagine there are a lot of us, but I personally only know one other person with any certainty.

With that in mind, what I want to do is to ask the rest of you to be kind and gracious: to realize that we really do love being with family, participating in the festivities, carrying on the fun or meaningful traditions we’ve built with you over the years, but that sometimes the weight of it all is just to great for us to carry. Sometimes the chaos of a joyful family is too overwhelming, the social pressure too intense, the smells and sounds and expectations a perfect storm that threatens all our normal coping mechanisms. When we have to leave early, or take a few moments of solitude to recalibrate, or drop out of the conversation and activity for a while, it’s not because we don’t want to be with you. Will you believe me when I say we’re making a huge effort to be there with you, because we love you and you matter to us?

And for anyone who’s trying to navigate the holidays through anxiety or depression, I feel you. I’ve been there – some years more so than others – and there really isn’t anything positive about it. It’s incredibly hard to stay engaged for hours of small talk, with stress-inducing levels of ambient noise and who knows what other irritants (low light and allergens, anyone?), when your insides feel like a black void or when every defense system in your body is on high alert. It hurts to try so hard to be happy and present only to end up feeling like you’ve failed, and ruined the holidays for someone else.

So please don’t feel guilty about taking the space you need to be you, to be joyful, to remember the big ideals or the little traditions that are meaningful and important to you as an individual. Please don’t feel guilty about advocating for yourself and your own well-being – if it helps, think that there are probably others who will be glad you spoke up because they’re running on fumes as well.

You are loved. You matter. Even if you can only be around for five minutes on Thanksgiving Day because you’re having an episode or an attack, the day will be brighter for everyone else because of those five minutes. When you’re fighting for each moment, sharing it with another person is one of the most precious and valuable gifts imaginable, and anyone who understands will value it accordingly.