Posted in family life

socialization and social distancing

As a homeschool mom with autism and social anxiety, some of my greatest parenting worries revolve around social skill development – making friends, navigating a variety of social situations, participating in classes and activities with other people, and so on. I worry that I’m avoiding things that are beneficial for the kids because of my own anxiety; I worry that they aren’t going to be able to make close friends and have the incredible blessing of loyal and persistent friendship; I worry that they’re doomed to be awkward and lonely because of me; I worry that I’m not doing enough to help them engage with other people and become familiar with social norms.

But now, in this season, all that weight is temporarily lifted: because everyone is supposed to be at home, and all the classes and activities are shut down anyways. It’s such a relief not to have those worries pressing down on me! And it is so beautiful, in a quiet and peaceful way, to be able to devote this time to cultivating our own family relationships and creating an atmosphere of love and contentment in our own home, without the constant nagging voice whispering that I should be doing something more, something else, something better.

I’m not sure how I’m going to phase back into social endeavors over the next few months. My default preference is to stay home with occasional trips to parks, pools, and libraries; my default inner response is that my default preference should generally be overruled as being most likely defective in some way. (Obviously this is a cause of some internal tension…). But I hope that as the social acceptability of outings and personal interaction increases, I am able to remember the goodness and value of time spent at home as a family and not automatically bow to the cultural pressure that says more (activities, acquaintances, experiences, etc.) is necessarily better. I hope that I will be able to find the path that is best for our family – with all of our neurological differences – instead of trying to fit someone else’s notion of what we should be doing or aiming for.

Posted in family life

when a child is sick in times of pandemic

It’s never pleasant as a parent when your child comes down with something. You put plans on hold, you schedule plenty of rest, you try to keep everything as clean as possible so no one else gets sick. You grieve for your child when they have to miss out on something they love; you soothe their fevers and pull their hair back when they vomit and reassure them with your presence; you watch their symptoms accumulate and decide whether to wait it out at home or call the doctor. But it’s mostly routine by the time you have three kids and the oldest is six – you’ve seen a lot of winter colds and coughs and stomach bugs by then.

It’s a bit different when all around you society is panicking about a virus whose symptoms just so happen to match your child’s. When you know enough about virology and epidemiology to understand the public health risks that make complacency the greater danger to the wider community, and don’t want to become an epicenter for a new wave of outbreaks. When you’ve heard an experienced doctor comment on how suddenly COVID-19 patients can go from stable on oxygen to needing mechanical ventilation. When you’re considered essential personnel in a lab on a campus that has already had 15 confirmed COVID-19 cases – despite serious testing delays and shortages – and when your child’s grandmother spent time with them after visiting Seattle in the early stages of the outbreak when more people were still skeptical.

It’s an eagle eye on your child’s breathing, then: an ear to his chest for wheezing, a glance around his collarbone and ribs for retractions, a counting with a stopwatch while he sleeps and the breaths come fast even though he’s at rest. It’s pulling out the nebulizer and albuterol to see if it makes a difference, and planning to go to urgent care if it doesn’t. It’s taking your child’s temperature multiple times a day even though the quick kid-friendly one is dead and you have to sit holding the old thermometer in place for three minutes waiting for a result. It’s making sure he covers when he coughs and that his siblings are washing their hands before every meal and after every time using the shared bathroom.

It’s a long and almost teary conversation with the nurse on the other end of the insurance-provided triage line (I love those nurses – they have helped me through so much anxiety and given me so much solid guidance when I’m not sure what to do), then, going through symptoms and addressing concerns. It’s a drop of the stomach when the nurse practitioner at the ER tells you your child’s symptoms are concerning she’s going to call the COVID-19 hotline to get you the best plan of action. It’s a panic that won’t let you sleep when she tells you that if his symptoms get worse – if he stops responding to the albuterol before four hours have passed and he can have another dose (the thing that triggered the original urgent care visit, so a very possible event), to be precise – he should go to the ER immediately, with a mask on, and you should alert the ER staff of the possibility of the coronavirus.

With the morning will come more things you can do, again, practically and tangibly for your child: antibiotics for an ear infection, albuterol for a cough, tylenol for a fever, hugs and kisses and books and simple foods to soothe a sick but hungry stomach, appointments to make for lab work. You can be with him again, in the light of day, to watch his energy levels and breathing. But in the night, when you both need to sleep, there is nothing to do except pray. And the prayer that seems to me most fitting, when there is fear and a valid reason to fear and your child whom you love is sleeping fitfully across the hall, is the antiphon to the canticle of Simon sung in Evening Prayer:

Protect us, Lord, as we stay awake; watch over us as we sleep, that awake, we may keep watch with Christ, and asleep, rest in His peace.
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 😛 )
  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 🙂
  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 🙂

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?

Posted in musings

insecurities

I realized today that being a good parent involves recognizing my own insecurities about my worth – the aspects of myself from which I feel my own value as a person comes – and not raising my children out of that place of fear.

For me – painfully shy, socially awkward, often feeling out of place or more like an observer than a participant, never quite fitting in – it was in my intelligence that I found an opportunity to shine, a way to attract positive attention from both adults and peers, and a role to play in my social network. Failing at something academic (with a very broad definition of that term that may include “not being perfect” or “not being the best”) was ridiculously hard for me to cope with, and the thought of losing my intelligence to brain injury or dementia is still one of my greatest fears. While I honestly enjoy and excel at intellectual pursuits, making it so central to my sense of self-worth left me feeling inadequate and incomplete, wanting to be seen and valued and loved for more than just my intelligence, to belong in a community for more holistic reasons. That was one thing that I loved about my husband Paul from the beginning: that he saw and loved the entirety of who I am, and didn’t make my intelligence the most important part of who I was to him.

Now, as my children enter the school years, I am noticing some of those same insecurities about my own intellectual “failings” resurfacing in a new form – how some part of me wants to push, and push, and push my kids towards academic success; how inside, I start feeling panicky because Aubade is three now and doesn’t know all her letters yet and can’t count past four; how I second-guess our educational choices multiple times every day because if I don’t choose the absolute best thing they are going to be less than what they could be, less than intellectually and academically perfect.

And it’s just as ridiculous and overblown now that it’s about my children as it was when it was just about me.

Academic success is a good thing, but it’s not the only or even the most important thing needed to have a good life, or a happy life, or a successful life. Character matters more, for goodness and meaningful purpose; emotional intelligence and relationships matter more, for happiness; and self-awareness, ambition, drive, and persistence matter more for success. Still more important than all of these is faith. Seek first the kingdom of God, Jesus says, and all these things which you need, which fill your heart with worry, will be given to you. For intelligence can be lost, and happiness can turn to sadness, and success can collapse in an instant – but God will never lose or forsake His children, those who love Him and are called by His name. It is His perfect love, after all, that casts out fear, that gives us value unconditionally, and that makes us whole.

Posted in musings

on abortion and disability

I’ve noticed lately an uptick in the discussion on abortion among my online friends and on the radio; I’m pretty sure it is due to some recent state laws (or proposed laws) related to the topic, but I have been avoiding political topics like the plague recently for various reasons so I don’t know the details. So I am not planning, here, to go into legal details. I don’t know what is best from a pragmatic perspective, balancing the needs and rights of every person in a far-from-ideal world full of broken and sinful people and circumstances.

But a lot of the arguments I have seen remind me of the atrocities commemorated every March 1st on the Disability Day of Mourning. There are parents who believe that their children’s lives will be not worth living because of their disability, who think it would be better if they didn’t live at all then live with that suffering, and quite logically decide to kill them. There are reporters and juries and judges who believe that the burden of care and support placed upon these parents by their disabled victims somehow makes their crime less heinous and more deserving of leniency and compassion. None of these parents wanted a disabled child, after all. Their entire lives were overturned and their expectations and plans were dashed because of these children’s existence. And since the victims weren’t going to have great quality of life anyway, due to their disability, surely we can all identify with their parents and the hard decision they made stemming from their grief and anger and stress (again, all the fault of the victim). On the Disability Day of Mourning, the disabled community remembers these victims, speaking their names, attributing to their memory the individual worth and human value that they were denied in life.

And when I read what my friends have to say in defense of abortion – focusing on the pain and grief of the mother, on the brokenness of the situations that most commonly lead to abortion, on the emotional and physical caregiving demands placed by the fetus on an unwilling parent, on the potential for child abuse and poor quality of life for the unaborted child – it makes me think that if we (as a society) can say these things about the killing of the unborn, it won’t be long before we can say them about the disabled. Because yes, all those points are true and valid and need to be addressed, but they do not invalidate the humanity of the vulnerable and needy and young – of the child who did not ask to be conceived, or to be born with a disability, but who as a result of the brokenness of the world finds herself in need of care and support with no open and loving arms extended to her.

How do we love and support those who unexpectedly find themselves parenting a special needs child with no clue of how to handle things – or who find out they are pregnant and know they have no resources to raise a child? How do we protect children whose parents sink into abusive or neglectful behaviors because they are overwhelmed by the support and care necessitated by their child’s disability or believe their disabled child to be less valuable or deserving of love – or because they never wanted a child and are suddenly pregnant and have no love to give to the child of a rapist or abuser? Whatever the best answer is, I’m fairly sure it doesn’t involve killing those children, anymore than it would involve killing the adults who find themselves in parental positions they are inadequate to cope with. We need to reach out with hands gentled by our own knowledge of the brokenness of the world and of each human heart, and smooth the troubled path before the feet of these parents and their children: sometimes to guide, sometimes to lend a helping hand over obstacles in the way, sometimes to carry, and sometimes to chart a splitting of ways. And at the same time, we need to make sure that the amount of support a person needs – the extent of their dependence on caregivers – does not impact the value we ascribe to their life.

Otherwise, we end up attempting to erase a problem by erasing a person.

Posted in book lists, sqt

{sqt} – reading highlights of 2018

I’m joining up with the seven quick takes linkup again this week, for the first time in a while, with a fitting theme for the last Friday of the year: 2018 favorites! My focus is going to be on the books I’ve read this year; with my end-of-the-year detour into fan fiction my booklist is shorter than it was in 2017, but it is still full of books I loved and want to share.

Parenting: Differently Wired, by Deborah Reber

differentlywired

If you were following my blog this summer, this favorite should come as no surprise! This is one of the best books I have found for parents of neurodivergent children – one that honors their differences and supports parents in helping their children to remain authentically themselves while also learning to live in a world that is often critical of who they are. For a more in-depth review, see this post leading up to its release this summer. (You may notice I tried to run a giveaway for the book; well, no one entered, so if you feel this book would be relevant or helpful for you, let me know… I still have the extra copy 🙂 )

Science: The Emperor of All Maladies: a Biography of Cancer, by Siddhartha Mukherjee

emperorofallmaladies

This book offers an interesting take on cancer, as it examines the history of human interaction with cancer in all its ethical and political context rather than focusing solely the medical manifestations of the illness (though it delves quite deeply into the biology of cancer as well). I learned a lot and was deeply fascinated through the entire book (but as it was a library book, I can’t go back to pull up any awesome quotes for this post, unfortunately!). While it is very long, I think it is definitely worth the time and effort to read it, especially for anyone interested in biology, pathology, bioethics, or science policy.

Other Non-Fiction: Just Mercy: A Story of Justice and Redemption, by Bryan Stevenson

justmercy

When you grow up in a privileged environment, it can be challenging to learn about corruption and brokenness in systems skewed in your favor. This book was difficult to read primarily because of the nature of its topic, and the injustices it exposed – whose depths I had no idea existed beforehand (even though I was aware of the biases in our judicial system, I was not aware of the extent of those biases, particularly in certain areas of the country). I picked up this book last Christmas on the recommendation of Nicholas Kristof of the New York Times, for both myself and my grandma, and both of us agree that it was a powerful and moving book, containing invaluable context for understanding (and hopefully healing) some of the racial and cultural divides in our nation. (For more of my thoughts, and some quotes, see this post from April.)

General Fiction: Major Pettigrew’s Last Stand, by Helen Simonson

majorpettigrew

In this novel, an old British major slowly falls in love with a Pakistani shopkeeper (both widowed), to the general consternation of her extended family and their entire village. The interactions between them on both individual and sociocultural levels are simultaneously awkward, amusing, and enlightening (in other words, fairly realistic for two very different people from very different backgrounds thrown into contact with one another); and the twists and turns of the plot are both somewhat unexpected and very satisfying. Major Pettigrew especially, as a slightly cynical and cantankerous old British man finding himself in ludicrously unprecedented circumstances, is quite a wonderful character 🙂

Dystopia: American War, by Omar El Akkad

americanwar

I’m surprised I didn’t post about this book back in July! Dystopia is one of my favorite genres, and this one hit particularly close to home. It is set in the southern United States, in a future in which climate change catalyzes a second Civil War; with Northern forces applying external pressure and international agents internally taking advantage of hatred and discontent, the book follows one individual from poverty, through a refugee camp, to indoctrination and grooming in a shadowy terrorist cell. The methods and circumstances are drawn from the actual history of civil war and terrorism in the Middle East, but the culture and setting are undeniably American, and the juxtaposition reinforces both the humanity of people our culture often labels as “other” and the very real possibility that our nation too could be ravaged by the dark side of that shared humanity. I highly recommend it, but it is not a comfortable read.

Science Fiction: Left Hand of Darkness, by Ursula K. LeGuin

lefthandofdarkness

LeGuin is an exceptional world-builder, and I have enjoyed all of her works, but this is in my opinion one of her best, exploring aspects of nationalism, humanity, and gender. How arbitrary are the categories with which we identify ourselves? When one of those categories is rendered meaningless, how do we cope with our own self-understanding, or refashion the image we present to others? How far can one stray from the center of a category and still be considered part of it, by either themselves or by others? And of course all of these questions are not so much discussed as illustrated and implied as the two main characters seek (in both the context of two different nations, as well as in almost total isolation) to accomplish a mission with global and even universal consequences.

Fantasy: Name of the Wind, by Patrick Rothfuss

nameofthewind

The story here, as wonderfully epic and convoluted and fascinating as it is, in a world with magic and music and legend coming to life, isn’t even the main reason I have to choose this book (and its sequel) as my top fantasy book of the year. Rarely have I encountered an author who can make their prose sing as beautifully as Rothfuss manages to do here. My only disappointment is that the third book in the trilogy has not yet been published, so while each book so far has a definite story arc and is still satisfying to read, the overall story is incomplete.

What are some of your favorite books from this year? Please share in the comments – I always love to hear about good books to read!