Posted in musings

thoughts on rest while dealing with a cold

I’ve been knocked out with a cold since Saturday morning but thanks to President’s Day this was my first day alone with the kids while sick. And… I spent the entire afternoon fighting off a meltdown and trying to help Rondel do the same as he’s also getting sick. Getting to go to work tonight was such a relief – a chance to escape the emotionally charged atmosphere in the house (probably only emotionally charged due to my current mood associations) as well as the constant sensory input coming from three little kids. I was alone, with tasks demanding very little from my overwhelmed socioemotional skill set and utilizing instead the more intellectual and scientific parts of my brain.

It made me realize how much I rely on that balance to give me renewed energy for the daily work of parenting, and how valuable rest – both physical and mental – is for coping with life in a turbulent world. (Work is very definitely restful for me, at least in this season of life). It also made me very thankful that I have this built-in source of margin! It helps me regulate, process, and relax – and in so doing it allows me to care for my family in a more calm and and emotionally available way. And at times like these, when my innate emotional margin is completely used up dealing with sickness, it is particularly helpful.

What are some ways that you expand your margins and give yourself rest, thinking of rest not simply as doing nothing but as creating mental balance or emotional space?

Autistic Behaviours are Human Behaviours

Autistic “challenging” behaviours are not “caused by autism”. They are a very human response to extreme stress. All humans in that kind of stress will exhibit these exact behaviours. Our behaviours mirror our emotions. If we are exhibiting “challenging” behaviours it’s because we are finding something in our lives very challenging. Same as anyone else.

– Autisticzebra, Autistic Behaviours Are Human Behaviours

Please go read the rest of this very excellent post by Autisticzebra. Autism often makes things more challenging – situations that seem normal or positive to a neurotypical may be extremely difficult for us. But the behaviors that don’t make sense to the neurotypical onlooker – the challenging, self-harming, out-of-control behaviors – they may seem a lot more rational if you understand where they are coming from. And this post helps put those behaviors into that much-needed context.

Posted in information, sqt

{sqt} – internalized ableism

I’m joining the quick takes link-up today at This Ain’t The Lyceum with a rather more serious topic than normal. Head over there for the rest of the regular varied line-up.

Disability is innately challenging in various ways (hence the term disability), but it is also socially challenging because the surrounding culture is not designed to accommodate disability, typically misunderstands, and frequently actively stigmatizes it. When a person in a wheelchair can’t navigate safely down the sidewalk because someone left one of those electric rentable scooters lying across the width of it, for example, that is a challenge posed social ignorance and carelessness, not an inherent challenge of the disability. When people assume that a disabled person’s life will be less meaningful, less joyful, or less worthy, just because of the disability, that stigma and misunderstanding add a significant challenge that is not actually part of the disability itself: the burden of proving oneself to the community instead of having one’s potential and value automatically acknowledged. And in the face of that assumption, repeated over and over again, the disabled person may even begin to believe it themselves, in what is called internalized ableism.

I can really only speak for myself and the disability I know well, autism. But for me, internalized ableism is:

  1. …scratching my arms till they bleed because it’s more subtle and socially acceptable than flapping my hands in the air and I really just don’t want anyone to notice that I’m different and struggling here, please. (Just realizing this and giving myself permission to flap and stim in other more obvious ways has reduced my self-injurious stimming a lot, actually.)
  2. …laughing at everything that is probably a joke so that I’m not the clueless person who doesn’t get cultural humor. (I laugh when I’m nervous or overwhelmed too. I hate this. I hate that my emotional responses don’t match up to what they “should” be and I have hated it ever since an adult got angry with me as a kid for laughing in an “inappropriate” setting. Internalized ableism is often learned through emotionally significant childhood events; it often speaks to the heart with cruel, cutting hate.)
  3. …acting like I know things, even if I’m not totally sure, if it seems like everyone else knows already – only admitting ignorance if someone else does, because then I’m not the weird one who might not be worth bothering with.
  4. …believing I can’t serve God in any meaningful way because I’m too anxious to build relationships and share the Gospel with my neighbors/coworkers/homeless people/etc.
  5. …trying to get my kids to act “normal” instead of helping them live fully into the way God made them, disability and all, because I secretly (subconsciously?) think displaying their disability will hurt their chances of friendship, community, inclusion, and happiness.
Limerick standing at the edge of a lake, arms raised mid-flap. I never want him to think he has to stop his excited flapping to fit in and make friends. I never want to cut out his natural and beautiful expression of happiness, and in so doing damage the happiness itself. So why do I try so hard to do that to myself?
  1. …doing everything on my own without asking for help, because I think asking for help for disability-related reasons either means I’m a useless burden on the relationship or lazy and immature and relying on my disability as an excuse.
  2. …assuming that the people I do rely on (particularly my husband, at this season of life) resent me or see me as a burden, or would do so if they understood the reality of my disability. I felt this years before I had a diagnosis: I knew that I was different, that I didn’t process things “normally”; that I had struggles no one else I knew had; and I thought this made me deficient and broken and that anyone who really knew me would stop loving me because it would be too much work. And that is just with Level 1 Autism. I can only imagine how internalized ableism, if not actively combatted, could bring down smothering waves of anxiety and depression on someone whose support needs are higher, either physically or emotionally.

In short – internalized ableism can rob the disabled person of joy, shut down their authentic self-expression, replace their faith and hope with fear and despair, and reduce the blessing and the gift they can be to the communities they are a part of. I don’t have a great solution for eradicating it, and I think it can only be done hand-in-hand with eliminating more generalized ableism in society – disabled people are going to pick up on the attitudes others have towards them, and especially as children can easily internalize those attitudes.

The following chart is, however, a well-written, sensitive, and helpful guide for evaluating your own attitudes toward disability. It’s aimed towards the non-disabled reader, but I honestly found it quite helpful in unearthing my own internalized and self-directed ableism as well.

Where on the chart do you see yourself? What has led you to where you are now in your understanding of disability, in either yourself or in others?

Has internalized ableism been a part of your life? If so, what does it look like for you? How do you move past ableism and learn to walk with joy in the fullness of who you are as a disabled person, beautifully and wonderfully made by a good and loving God?

Posted in musings, quotes

treating autism

“The absence of effective treatments for manic-depressive illness in earlier times did not mean that these patients were not treated. They were treated with all sorts of substances and procedures from ancient times onward. It’s just that none of these treatments worked, and most were harmful.” – Walter A. Brown, Lithium (emphasis added)

When I came across this quote I thought instantly of modern treatments for autism – not the few designed to help an autistic individual learn to cope with the neurotypical world, but those that claim to cure the condition. Even the most mainstream behavioral therapy is concerning (particularly to autistic adults who endured it as a child), and desperate parents who can’t handle having an autistic child try many stranger and more dangerous “treatments.” Different restrictive or elimination diets are supposed to reduce the behavioral symptoms of autism, according to parental observations; given the oral and textural sensitivities of many autistic people, those diets are likely to become even more restricted to the point of being unbalanced, or very costly for the parents (and objective, blinded research observations show no difference). Parents may choose not to vaccinate to prevent autism, and instead create opportunities for potentially deadly preventable diseases to flourish. And one has only to read about the “bleach cure” to see how supposed cures can cross the line from unwise to abusive.

Autism may not even be curable. It’s highly unlikely a single compound will be found that renders the autistic mind essentially neurotypical, like lithium can regulate and even prevent the mood swings of bipolar disorder. And yet so many people invest so much time, energy, and money into making autistic people act like and think like neurotypical people – even when those efforts are harmful to the autistic people they claim they want to help. It’s like forcing deaf children to speak orally and lip read instead of encouraging sign language, or shaming a wheelchair user for not trying harder to stand and walk. Instead of hurting autistic children to try to mold them into conformity with some neurotypical standard they can never completely reach, support them by making the world more aware and accepting of neurodiversity. Help them develop social skills, adaptive and pragmatic skills, and language skills without trying to change the core of who they are, and learn to see each child for the unique and beautiful person that they are, needs and struggles and gifts all bundled up together.

Posted in links, musings

janus (looking forward, looking back)

Image taken 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:

  1. autistic inertia
  2. seven awesome things about being autistic
  3. {sqt} – spring will come again
  4. autism and faith
  5. {sqt} – seven senses: sensory processing struggles and strategies

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.

Posted in family life, musings, quotes, sqt

{sqt} – some awesome saints, and other thankful things

I’m linking up with Kelly at This Ain’t the Lyceum today – head over and read the other quick takes!

  1. Right now, I’m so thankful for the communion of saints and for the wisdom of the church in setting up set days to remember them! I’m thankful for St. Therese of Lisieux, whose feast day was earlier this week, and her reminder to me that all that matters is to love God – and that I can love Him completely and faithfully in each small, tedious, mundane act of service and duty that I do. I’m thankful for her example of perseverance and submission, accepting the waves of life as God brought them and honoring the human authorities over her.
  2. I’m also thankful for St. Francis, who we celebrate today, and his radical yet simple life of faith. How could I not want to learn from and follow in the footsteps of a man who saw and respected the beauty and dignity of all nature without succumbing to the nature-worship of the ancients or the romantic poets, who received visions from God but interpreted them so literally that he may have been autistic and certainly appeared foolish, who embraced that foolishness and transformed it into complete humility, who designed his own way of life and faith yet never broke fellowship with the institution of the Church, who lived in utter poverty and served the least and the forgotten? When a person’s prayers are preserved 700 years after their life and still ring with deep resonance and passion, that is a person I want to emulate and honor, whose prayers I wish to echo.

“I pray, O Lord, that the fiery and sweet strength of Your love may absorb my soul from all things that are under heaven, that I may die for love of Your love as You deigned to die for love of my love.

St. Francis, prayer to obtain divine love
  1. I’m thankful also for the warrior saints – for the angel Michael, who we celebrated on Michaelmas, and for his legendary archetype St. George fighting the dragon. Life can seem so big and demanding and overwhelming to a child, like the dragon loomed large over St. George, but in the saint we find inspiration to fight our dragons, to get up and try again even when we are knocked wounded to the ground, until they are finally slain. Like Michael fighting demons to bring the message of God to Daniel, using his strength and courage and valor to persevere in obedience, so we can summon up those traits (by the grace of God, and by practice and growth) to fight back the temptations to fear, laziness, anger, and any other vice that besets us. We read an illustrated rewriting of Spencer’s version of St. George and the Dragon this year, and it has given both the boys and myself extra motivation to endure in doing good even when it is hard. We know there are dragons; it is good to be reminded that they can be killed.
  1. I’ve been thankful for the weather recently as well! The heat broke and several days of rain blew inland from a hurricane, just a couple weeks after I seeded for the fall garden season, so all the little plants are doing beautifully and the sweet potatoes (which had to be started in the summer) are absolutely thriving – I’m trellising them so the vines don’t take over the garden beds and the vines are at least six feet up the trellis already.
  2. The kids were also so excited about the rain, as it’s such a rare occurrence here and the monsoons were weak this summer. We went on walks all around the neighborhood to enjoy it, Aubade splashing in every puddle, Rondel searching for treasure along the way, and Limerick challenging my strangeness by biking around barefoot in pajama pants and a winter jacket…
  1. There have also been some hard days recently – my moods and autistic sensitivities both oscillate based on a number of factors including my monthly cycle, and irrational guilt plus social anxiety plus hair-trigger sensitivities to certain sounds or touch does not make for a pleasant time. But I am so thankful that Paul understands and supports me through those times. He might not relate to it at all, but he knows it’s a struggle I have and he carries the extra weight of it when I can’t without ever making a big deal about it or drawing attention to himself. He doesn’t get upset when I hide by myself in a curtained side area during church service instead of sitting with him on days when I can’t tolerate the people around me. He makes time for me to rest and then makes sure that it happens when I need it. In short, he is always showing me love.
  2. And finally, I’m thankful for prayer and the Word and a God who draws near to us and longs for us to draw near to Him. I’m thankful for the sacraments: for the physical and tangible things God uses to convey His grace, like the mud and spit He used to give the blind man sight, and the waters of baptism that cleanse more than just our bodies. I’m thankful for His plan of redemption, for the hope that all broken things will be restored and that the glory to come will outweigh the suffering of the present, for the opportunity to say yes to His will and be a part of making all things new.

What are you thankful for this week? I’d love to hear the good things God is working in your life, whether it’s in the weather or a book or a relationship 🙂

Posted in family life, sqt

{sqt} – just living life

This is a real {sqt} post this week: just seven updates from our life 🙂 Visit This Ain’t the Lyceum for the rest of the linkup!

  1. I now officially have my autism diagnosis! So if you read my series for Autism Acceptance Month, which I wrote during the diagnosis process, you can now be comfortable in the knowledge that it comes from a “real” autistic person instead of an imposter. Not that I think most self-diagnosed individuals are – but it was how I was afraid I would be perceived (and honestly, I was deeply afraid that it was true of myself). It was a lot easier than I thought it would be, and also a lot more uncomfortable. I was so afraid, the whole time, that the psychologist would tell me I was just intelligent with typical gifted quirkiness – and then I would be left wondering, if that were so, why I seemed to struggle so much with things that came naturally to the gifted friends I grew up with? But fortunately for my peace of mind, I can now say I’m autistic with confidence, and I say it to myself a lot when I need to advocate for myself or address areas of weaknesses in my life, and it helps to stop the perfectionist depressive thinking patterns from asserting themselves.
  2. I have realized how much game play helps with the development of strategic thinking and forethought, by watching Rondel grow in those skills. I’ve seen him take the initiative to plan a course of play at the beginning of a game; stay aware of the events of the game so that opportune moments for deviating from that plan can be seized; look ahead at his opponents’ possible moves to make the optimal choice for his own; and see several steps ahead on the pathway to his desired end – in several different game settings. These are really valuable skills for life, not just for games! This is all about considering options, observing the environment, planning for the future, and making decisions in the moment that affect long-term goals. When I write up his kindergarten year summary, I may include some of these games in a SPED section under executive functions…
  3. Teaching something that I don’t remember learning is challenging. In other words, while we are all into math and science over here (definitely at least a grade ahead in math, and more for Limerick), we’ve barely done more than the alphabet and letter sounds when it comes to reading, and I’m struggling to know where to go next. I have a few ideas from my sister-in-law and I looked up some phonics/beginning reader games online that look fun (my kids are always up for a new game) – but to me, reading is like breathing. I can’t imagine (or remember) life without it. And how would you go about teaching someone to breathe?
  4. I may have a new favorite food, and I think Aubade would agree. I whipped up some heavy cream, added some yogurt and maple syrup, and discovered paradisiacal creaminess with just the right balance of airiness and weight, sweetness and tang. We’re calling it “breakfast cream”, over here.

    IMG_5466
    Picture is of Aubade in a black and white striped polo shirt at a kitchen table with a bowl of whipped yogurt, eating a spoon of it, with white smears all around her mouth and nose.

    The recipe is very straightforward: two parts heavy cream, whipped until very stiff; beat in three parts plain Greek yogurt (I used full fat); sweeten with one tablespoon maple syrup for each quarter cup of yogurt. Last time I made it, I rolled it up inside fresh crepes with diced peaches; Aubade just ate three bowls of it unadorned 🙂

  5. The cantaloupe vines have reached the top of the trellis (8 feet high!) and are beginning to claim the other side. It makes for a beautiful shady green retreat from the world, tucked under the trellis on a camp chair, looking out at the sunflowers starting to bloom. The fruits themselves are not overwhelming in number (which could be because I planted too many too close together), but they are massive. Paul keeps asking me if I’m sure they aren’t actually watermelons and I can’t really blame him because I have never seen cantaloupes this size in my life…

     

  6. Every few months for the past couple years, I’ve pulled out my old pattern blocks to see if the kids are interested in them – and now at last their interest and their fine motor skills are there! Limerick and I make patterns (he prefers to work with me rather than on his own, even if he’s making all the decisions), and Rondel tends to build animals. Aubade isn’t really ready – but she has fun playing along with the boys 🙂

    It is such a great foundation for an understanding of geometry and the more mathematically abstract styles of art, and having the hexagonal base is a nice contrast to our other building toys which are either octagonal (Brain Flakes) or rectangular (Legos). And it’s just so much fun… I could make patterns for hours.

  7. This past week was rather interesting for me in terms of theological discussion. My sister-in-law and I had a discussion about Protestant/Catholic differences that spilled over onto Facebook (where actual Catholics got involved, to my delight) and many text messages days later. Then, I spent a morning with two Protestant missionaries on home assignment, and finally was accosted by two Mormon missionaries that same afternoon. These are all concepts and divisions I have thought about and researched a lot, but I don’t often have the opportunity to actually discuss them in real life very frequently. And I realized that while I still am officially Protestant, I was arguing the Catholic side and thinking in Catholic terms more often than not during all of these interactions. So, having surmounted the autism diagnosis hurdle, addressing this theological hurdle is next on my list of Important But Uncomfortable Things To Address. I’d be interested in any resources, thoughts, or experiential wisdom you have to offer here!

Again, don’t forget to visit the linkup today! If you share your own blog there let me know and I’ll make sure to read it, or I’d love to hear some of the highlights of your week in the comments as well 🙂