Posted in sqt

{sqt} – disability rights, epidemics, communication, love, and lemons

  1. Some good news this week – the FDA has banned the electric shock devices used by the Judge Rotenberg center to control disabled (primarily autistic) patients. From the ACLU statement in response to the ban:

    “Using what are essentially human cattle prods to shock people with disabilities into compliance is simply barbaric. For over 40 years, the disability rights movement has fought to ban the use of abusive ‘behavioral treatment’ methods such as these ESDs. The FDA’s decision today banning their use should be seen as a necessary and important first step to securing a broader prohibition on the use of aversive interventions.
    “People with disabilities deserve the right to be supported with dignity and respect, and there are no circumstances under which they should be subjected to pain as a means of behavior modification.”
    – Susan Mizner, director of the ACLU’s Disability Rights Program
  1. Some not-so-good news is that the novel coronavirus COVID-19 does seem to be of potentially greater concern than I originally thought (in line with the flu in terms of transmission rate and severity, far lower in total number of cases so far, but still concerning to researchers and health care workers because it is an unknown agent). In response to that, one of the labs we frequently work with at the university is optimizing protocols for high-throughput diagnosis and training people to run those protocols; if an emergency situation does occur where the load of potential cases is very high, they’ll be equipped to run 24/7 and process 1000-3000 tests a day. (I say “they”, but I’m hoping to run through the training myself so I can be part of the public health response if the epidemic becomes a serious issue locally. I guess I’m nerdy enough that the opportunity to be involved with a novel virus on even a small scale is just purely exciting to me ­čśŤ )
  1. Coming down to a more personal scale, communication and relationships are so hard. Even when two people are trying as hard as they can, misunderstandings can happen and feelings can be hurt and it’s just all around miserable – so much so that even knowing how a good conversation about something meaningful can fill up my heart like food and drink, it’s tempting to just not even try sometimes. But isolating myself doesn’t lead to health, or happiness, or holiness; it leads to bitterness and selfishness and despair. My sister shared a quote with me today that speaks to this, and of far more than this – of the value and even necessity of pursuing relationship in a self-giving way, of staying alive and invested and connected not for your own sake but that you might in so doing pour out your life for the needs of others and open yourself to be so poured into by others (and I don’t have access to the original formatting of the quote, unfortunately, since that can be significant with poetry):
"I don't want to feel better; I want to know better.
I should have known that God is not in the meal
but in the sharing of the meal.
I should have told you that holiness resides in needing each other,
in acts of survival made generous."
- Julian K. Jarboe, "Everyone on the Moon is Essential Personnel"
  1. Speaking of powerful quotes from books, I came across this one and realized that far too often I am impatient with and even contemptuous of weakness – starting with myself, but sadly spreading out to those around me as well. I do not often respond to my own struggles with compassion and grace, and that attitude of harsh, high standards can carry over into my interactions with other people. Having had the issue brought to my attention, I’m trying to be extra intentional about cultivating a spirit of love and gentleness instead: to offer open arms and a listening ear instead of an eye roll or an “I told you so”; to wait calmly for someone to process and express themselves instead of letting my attention drift away from them in impatience or disrespect; to make space for struggle and failure and fear and meet people where they are instead of expecting them to succeed in a way or time that’s convenient for me.

    “No one is of the Spirit of Christ but he that has the utmost compassion for sinners. Nor is there any greater sign of your own perfection than you find yourself all love and compassion toward them that are very weak and defective. And on the other hand, you have never less reason to be pleased with yourself than when you find yourself most angry and offended at the behavior of others.”
    – William Law, cited in Sacred Marriage by Gary Thomas
  1. One of the great blessings of cultivating this gentleness and patience is seeing the happiness and peace it gives to those around you. I think as a parent of small children it’s easier to see things like that – young children are both more sensitive to their parents’ attitudes and more expressive of their own feelings. For example, Rondel has been working really hard on riding his bike the past few weeks. He has training wheels, but he still feels very panicky about balancing, steering, and just generally maintaining control of the bike, especially at faster speeds. It is so easy to become frustrated when he bikes at a slow walking speed – Limerick racing ahead then having to wait for him to catch up – particularly because he doesn’t look anxious at that speed. Some part of my mimd interprets his actions as laziness or an unwillingness to try when really they stem from anxiety and poor motor skills, and my resulting impatience just makes him feel worse. But when I remember to re-evaluate in terms of gentleness and grace, I can see the anxiety and try to help him work through that root problem so that biking can be something fun and energizing for him like it is for his siblings.
  1. Another thing that I’m learning as a parent is how little control we really have in the interests our children develop. Aubade wears princess dresses as often as she can, claps with delight at the thought of going to a shoe store, revels in sparkles and stick-on earrings, and pretends every playhouse is a “princess house.” Just. What. I have no words. Aside from having to tell someone with no concept of monetary value that she can’t have all the shoes she desires, though, it’s actually pretty fun ­čÖé
  1. Finally, I got a bag of lemons from my mom and need to use them up this weekend! I’m definitely going to make a jar of preserved lemons, now that I know I like them and won’t wait six months before breaking into them, as the batch from last year was beginning to get mushy (still tasted good though). I’m also contemplating making a jar of lemon marmalade, but I’m debating whether or not to add some sort of accent flavor to it. I could go a slightly savory route with rosemary (I made a rosemary and lemon shortbread last week that I loved, and this would be a similar flavor profile), or more Middle Eastern with cardamom (my favorite spice of all time). Or I could keep it straight lemon, simple and bright. Any thoughts?

Head over to This Ain’t the Lyceum for the rest of the Seven Quick Takes link up! For fellow homeschoolers, there were some helpful/thought-provoking posts on that topic this week that I found encouraging ­čÖé

Posted in musings

stimming for joy

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┬áhave 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.

Posted in family life, musings

stepping outside of routine

Change is hard. Routines give life structure and reduce anxiety. This is probably especially true in a partially autistic household…

But sometimes, you have to swallow your fears and set out into the great wide somewhere, without knowing what might happen, even expecting that something may happen for which you are utterly unprepared.

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And then, sometimes – more often than your fears would lead you to believe – there is freedom, and there is joy.

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There are places and times when the beauty and the wonder overcomes the discomfort of uncertainty or freezing water, and happiness can reign uncontested.

There are moments when the lure of the next rock over proves greater than your apprehension about the deep pool that lies between you and it, and moments when crossing over through your fears ends up being one of the best parts of your day because that thing you were so worried about is actually something you love, that brings out the adventurer in your soul.

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It takes a lot of energy to step outside the normal and comfortable patterns of everyday life; I’ve discovered that I need to plan for a day of rest and recovery afterwards. But the thrill of living more fully, more expansively, less bound by our anxieties and routines, is very often worth it.

And for me, the scent of the clean air, the caress of the warm sun, the rhythm of the flowing water, the strength and grace in every line of plant and rock – those things are always worth the effort it takes to find them.

(Many thanks to the friends who made this possible by inviting us along and giving me a safety net to quiet my anxieties! I wouldn’t have gone without the assurance of helping adult hands, since my husband wasn’t able to come along, and now I know that I am capable of handling this kind of adventure on my own in the future. Your support was invaluable for the moment as well as for the moments that are still to come.)

“…many parents, educators, and therapists prioritize academic achievement over instilling happiness, even if it greatly increases stress. In fact I have heard proponents of some approaches take issue with the idea of emphasizing happiness, arguing that for children with autism, it is far more important to develop skills than to be happy. In other words, instead of measuring happiness, we should be measuring skills.

“Not only is this way of thinking misguided, but it misses the point. Children – and all human beings – learn more readily when they are happy. They retain information more effectively when they feel positive emotion. When we try to learn under persistently stressful situations, we retain less, and it’s more difficult for us to access what we learned. But when we’re feeling a positive emotion, we’re more primed for a learning experience, and our learning is deeper and far more effective.”

– Barry M. Prizant,┬áUniquely Human

because academics isn’t the ultimate end

Posted in musings

bike thefts and mindfulness

Remember how excited I was about biking in my {SQT} post on Friday? Well… it’s a good thing I’d written that post the night before, because when I went out to the garage that morning both my bike and my husband’s bike were gone. Beautiful brand-new bike (first new bike I’d bought since I was in junior high), stolen. I took the car instead that morning, and worked on cognitive-behavioral techniques about it all day (because sadness triggers a lot of unhelpful thought patterns for me), and prayed about the best way to move forward, and just generally felt sad and disappointed and hurt all day long. It wasn’t just a bike that was stolen: it was my quiet time with God, my exercise time, my outdoor alone time, my time of refreshment and empowerment, that was taken away. And I didn’t know if it would be financially wise to buy another bike when we apparently live in a high-risk area.

But what I did know was that I didn’t want my (very legitimate) sadness to prevent me from experiencing the happiness of all the good things that were just as much a part of my life as the bike theft. Driving home, I thought about how the kids were waiting for me, how they would be excited to see me, and want me to play with them, and fill the house with silly games and wild stories and sweet cuddles – and how my sadness could interfere with my ability to connect with and cherish them, or keep me from feeling the joy of their laughter and craziness. Was I going to let this unknown thief steal the┬áhappiness I have with my children? No I was not! It is ok to be sad, I told myself, but right now, in this moment, I am going to seize the joy and beauty and love that presents itself, and let the sadness wait until a time when I can listen to it and determine how to address the practical issues the theft created. The bike was stolen in the past; the commuting will take place in the future; but my children are with me┬ánow, offering up their little happinesses, desiring my love and happiness in return. And I can choose what I am going to open my heart up to in this now, this present moment. (Oho! Look at that! It’s my 2017 word of the year!)

One of the things I’ve learned from my therapist is that it’s extremely┬ápointless to try to make a thought or emotion go away. The more one fights it, the bigger and stronger it gets. Choosing to open oneself up to a new thought or emotion, however (a more helpful alternative), allows the unhelpful thought or emotion to slip away, or at least shrink into the back reaches of the mind. So that’s what I tried to do with my sadness and disappointment, by fully living in the present moment so characterized by the happiness (and neediness ­čśŤ ) of my children.

(And in the end, we found two cheap old bikes on Craigslist that will work for now and not be quite as appealing to thieves – or quite as much of a loss if they are stolen! I still miss my bike, but at least I don’t also have to miss biking itself.)