I came across this comic the other day and completely related to it! As in, this is me not just every night when the kids are asleep and I have self-directed time, but every time that the whirlwind of planned activity, schedules, and input from other people (mostly the kids demanding things 😉 ) stops long enough that I have to decide what to do next.
The artist behind this strip, Steve Asbell, has a whole series featuring Stimmy Kitty here. The comic illustrating the build-up to a meltdown/shutdown was also one I particularly identified with, but really they are all quite good and you should check them out if you’re not already familiar with them!
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 “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.
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.
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:
…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.)
…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.)
…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.
…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.
…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.
…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.
…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?
“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.
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.
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.
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.
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’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.
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.
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…
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.
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 🙂