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!

Posted in musings

turning thirty

I suppose turning 30 is as good a time as any for contemplating my twenties and looking ahead to my thirties, since we use a base ten system. Ten years is such a long time, when I sit down and think about it – I mean, ten years ago I was single and in college, and ten years from now I will have two teenagers…

It is interesting how time passes, how so many things change about life and circumstances, and how yet, inside, I still feel like the same person I always have been. I suppose I have grown and matured since childhood; but I still feel like the preteen who couldn’t put feelings into spoken words even when she was bursting with them, like the teenager who was haunted by feelings of inadequacy and failure, like the college student who knew how to excel academically but could never maintain social connections, like the young adult who tried to bury her insecurities by attempting to be perfect at absolutely everything. I suppose that is part of being a complete person: carrying a self that at its core remains one thing, one entity, despite the processes of maturation and the effect of time.

And what have time and maturation done for me, these last ten years?

Superficially, I graduated college; got my first non-student job (which I’m still at 8.5 years later!); lived with roommates for a year; recovered from a break-up; lost a treasured mentor; dated and got married to my husband; bought two homes (we moved); and had three kids.

Not so superficially, I struggled a lot over the last ten years with my inner companions of depression and anxiety. The first year of our marriage was especially hard because it felt too good to be true, I suppose, but in the long run our marriage has ended up being one of the most helpful things for that struggle since I have a partner I can trust to unconditionally love and support me through hard times. Also in this decade I sought out professional help for the first time and found it incredibly helpful. I’m realizing that depression and anxiety are fairly loyal and steadfast traveling companions, so I know I’m in for a more struggles still to come, but I’m also realizing that having them around doesn’t make me any less valuable or worthwhile as a person.

Along with mental health and marriage, parenting and neurodivergence have been the two big players in my life over the last decade, particularly the last five years. I have been learning that difference is not necessarily negative, in either myself or in others, that perfection is not the goal (and is ultimately a subjective goal anyway). I have been (and probably always will be) learning to be patient 😛 I am learning how to draw boundaries for myself – even with my children – and how to teach my children to draw boundaries for themselves. I am learning that a bad day or a difficult season does not make me a failure as a parent. And I am learning not to compare myself or my family to other parents and families, because the differences of personality, neurotype, and circumstance are so vast and varied.

Most days, honestly, I feel like an imposter at this whole adult-ing thing. Inside I’m just a teenager, nervous and insecure, with the added pressure of having more years of mistakes to look back on 😛 According to my husband this is fairly common, though, which is somewhat consoling 🙂 My hope is just that, however many years are still to come, I will keep growing in wisdom and holiness, and that I can be a blessing to the people around me instead of running away from them.

Posted in family life, musings

parental ableism

It is hard to be a child. It is hard to be a parent.

It is harder still to be a child with a disability – to be noticeably different from the world while still having to find a way to live in it, to be growing and developing on a different timeline and watching younger friends and siblings attaining higher skills, to be unable to participate in “normal” activities and events. And it can be harder to be the parent of a different child as well: there is the pain of seeing your child left behind, isolated, excluded; there is the sorrow of knowing certain paths are closed for them; there is the hurt of watching them hurt, physically or mentally, because of their condition.

Anyone who denies that parenthood can be difficult is delusional, but in the autism world there is a subset of parents who twist their children’s difference into a curse, who portray themselves as martyrs and who thus by implication make themselves out to be the victims of their children’s autism (and, since autism is an integral part of a person, victims of their children). I haven’t had much contact with these parents, and I am not sure how large of a group they are though I have read about them often on neurodiversity advocacy websites, so I didn’t have the inoculation of experience to protect me when I opened up Pinterest and saw this image at the top of my home page:

badparent
White words on a gray background: “I have a child with Autism. Everybody sees his struggles, but nobody sees mine. It’s hard to be screamed, yell at, every single day. It’s exhausting listening to him cry every single day.”

This parent is clearly feeling resentful of their child. They see their son struggling, and instead of responding with compassion they just resent the burden that those struggles impose upon them as the parent. (So while they “see” their son’s struggles it doesn’t seem like they are knowing and understanding their son in his struggles.)

Well guess what?

Your son didn’t ask to have a parent who doesn’t want to hear his tears with love, or to help make his environment safer and more accepting so that he’s not continually triggered to tears and screams, or to view him with compassion and understanding.

Your son didn’t ask to be born autistic in a world that values normalcy and conformity, especially in children, who are expected to walk in obedient lockstep through the typical developmental stages and the standard grades of school.

And I can guarantee you that your son doesn’t want to scream and yell at you all day long. Every child – yes, even autistic children – want to have a relationship of peace and love with the people that they are most closely tied to. His behavior is how he is communicating to you that something in his life is horribly, terribly, wrong. He could be non-verbal and in physical pain he doesn’t know how to communicate or address (like my friend’s son often is). He could be overwhelmed by an uncomfortable sound or smell or feeling, and be unable to handle that sensory input on its own or in conjunction with some other social trigger (like my son often is). He could be in ABA training for hours each day and have no other way to tell you that it is sucking the life out of him to be forced into a neurotypical box where he knows he will always fail and always be judged.

Maybe you, as the adult in this relationship, need to address the anger issues you have with your son’s autism before blaming him for the way you are reacting to his attempts to communicate with you. I understand that things can be hard, but it is never appropriate to shame your child for his struggles on the most public forum possible (the Internet), and it is incredibly immature to add to that by insinuating that your struggles are all due to his inability to be a normal child, that you are some sort of martyr for putting up with him. Get the support you need, and check your attitude, in a private community where your child’s dignity can be protected and respected.

goodparent
White words on an orange background: “AUTISM. When I have a hard day I know he’s had it harder.”

I love this second image so much because it acknowledges that both parents and children will struggle without victimizing either of them, without an attitude of resentment towards either of them, and with respect and tenderness towards both of them. (And it puts it so gently too!)

Like I said above, the hard and difficult behavior of a child, especially a child on the spectrum, and even more especially a non-verbal child, is a method of communication. Their needs and wants and struggles will show up in the way they act, and while their behaviors may be particularly challenging for a parent to deal with, they are a symptom of something deeper that is wrong.

And if you are that parent, faced with those challenging behaviors, feeling at the end of your rope, unsupported in your own struggles, please find help, and please do not blame your child or their autism for your struggles. Honestly, blaming anything only leads to more resentment. Try to see those behaviors as a clue to finding the best way to support and help your child. Try to see your child as fully human and fully deserving of respect and dignity despite their struggles and the struggles you have as their parent. And try to remember that no matter how hard your day is – as a neurotypical adult in a world set up for the way you operate – that your child’s day – as a neurodivergent child in a world foreign and alien to the way they operate – was almost certainly harder.

Posted in sqt

{sqt} – a very random list of things

I’m linking up with Kelly again today and I have no theme at all! Proceed for seven very random facts about myself and our week, some of which (say, 1 and 3 maybe) may explain my relatively low posting volume this week.

  1. Slightly embarrassing confession: I really like reading Harry Potter fan fiction (especially about the Marauders)… some if it is quite well done, and it’s basically like reading short stories about characters I kind of know in a world I’m already familiar with and it’s so good to be back in that world exploring it more.
  2. Another confession: I love reading books that make me cry. And nothing makes me cry more than the fumbling attempts of imperfect human love and compassion to console and heal people broken by the world. Like, a story where someone is finally finding a place where they belong and are accepted after years of feeling alone and inadequate and unlovable? I’ll be sobbing all over the place and I’ll reread it at least three times.
  3. We have been doing so many fall things that we almost burned out this month – multiple hikes up north, two different local pumpkin farms, picture books, pumpkin faces, pumpkin painting, fall-themed finger-painting, fall-themed play dough… it’s getting a bit excessive. I suppose we are simultaneously relishing the colder weather that makes it feel like fall and making up for the lack of traditional autumnal colors 🙂
  4. I’ve been avoiding Facebook because it’s been making me angry, and I’ve been hanging out on Pinterest instead. But then today Pinterest made me angry too 😦 I’m going to try to write about it this week (update – here’s the link) because I think it is an important point and not an irrational emotional response. Short version? Don’t act like you are victimized by your kids. There’s a difference between having a hard time as a parent and throwing your kids to the Internet wolves like it’s their fault for existing and having struggles.
  5. Rondel found a kangaroo Halloween costume he loved back in August… and he’s already outgrown it! He requested butterfly wings instead (because he glanced at my Pinterest and saw them) and chose a species called the Royal Assyrian from our Eyewitness book on butterflies. Neither of us felt comfortable just making up a butterfly; we both felt much happier looking up a real one. It wasn’t his first choice but it was his first choice that didn’t have black on it, since I have yards of felt in about 10 different colors but for some reason have no black felt. It is brown and purple, so it isn’t especially vibrant or bold – but he does want to add purple glitter so that should brighten it up. And it just makes me really happy that he can have all the fun of bright sparkly colors without someone telling him that purple glitter is for girls.
  6. For anyone else wanting to make butterfly wings or similar crafts with felt, I strongly recommend using a glue gun and I strongly recommend not using ModgePodge. I mean, unless you want your felt to become stiff and hard and not reliably stick together…
  7. And finally: it is not safe to let me into a craft store without a defined list and a spending limit. I went to buy a glue gun and pom-poms today and came out with pipecleaners, googly eyes, and a coloring book as well. (And the 300 pack of pom-poms instead of the 6 pack which is really all I needed, because they’re just so cute and fluffy and the kids will love them and pom-poms will be everywhere!!! My husband is horrified.)

I hope you all had a great week! Are you excited for Halloween? Are your costumes ready or are you in the midst of last-minute creations like we are?

 

Posted in family life

little autistic moments

Sitting together at the library, in two separate armchairs, Rondel and I examine the book in my hands. It is hardcover, with no plastic library jacket – smooth and pleasing to touch. The colors are soft and cool. It is thick; Rondel is full of anticipation and I am a bit apprehensive about how long it might be. When I open it, he looks up at me excitedly and says, “I can smell the pages!” More and more often he is noticing the smells of his environment, drawing out for himself an extra level of enjoyment (or disgust, sometimes, unfortunately) by way of his extra-sensitive senses.


Making toast for my three kids and a visiting friend, I fill up our small toaster oven with four slices. Rondel has asked for two pieces of toast at once, since he is hungry and we normally make two at once for him. I explain that the toaster is full so he will have to start with one and have a second piece later, and he seems unable to accept the change: wailing, threatening, screaming, sobbing. He even says that he wishes our friend (a toddler Aubade’s age who I occasionally babysit, and who Rondel loves) were not present if it means that he cannot have two pieces of toast at once. Limerick, 16 months younger, turns to him and says, “Dude, Rondel, the toaster is full! You can have another one later!” But it is always two pieces, and it is not alright that now this time it is only one.


After swimming at my parents’ house, I tell the kids that we will need to go home soon because Grandma isn’t feeling great and we don’t want to wear her out by staying too long. Rondel instantly begins telling me how he doesn’t want to leave, how he wants to stay at Grandma’s house forever, and so on. But when I ask him what he wants to do at Grandma’s house, he doesn’t know. He ends up suggesting, halfheartedly, that he could watch a movie, his go-to answer when faced with a transition he isn’t sure how to handle (it comes up in angry meltdown-inducing transitions as well as the more frequent “stuck” moments in between activities).


Getting up in the morning, sleepy-eyed and hungry, trying to figure out the day’s schedule, I am immediately bombarded with requests from Rondel to play board games. They continue for the whole day: after Aubade nurses, while she naps, as soon as one board game is finished, as a response when I ask if he is hungry for breakfast or lunch, and so on. If I say no, he keeps asking; he doesn’t usually get angry or demand that I play, but he tries to persuade me by making it more convenient and breaking the process down into smaller steps, persistently wearing me down. For example, he’ll bring the board into the kitchen if I’m making dinner, or he’ll offer to roll the die for me if my hands are occupied. It is his passion, his obsession right now, and he cannot let it go.


It is easy to see the ways that being autistic affects how he perceives and behaves in the world, in all these little moments. Some ways are positive; some are neutral; some are challenging for him and potentially also for the people around him. But they are undeniably there, pervasively present in his being in the world, making him distinctly different from most of his peers. And so we work together to make the world he lives in more supportive, so he can develop and mature and learn without the pressure of trying to continually mask. We establish routines and give him advance notice of upcoming changes; we give him extra space to process the unexpected; we coach him through transitions by helping him visualize what is coming next; we help him find creative ways to pursue his current passion when other people aren’t available to engage in it with him at the moment. With each day, he learns and grows and finds ways to be himself and cope with the expectations and realities of the world around him; with each day, we learn and grow and find ways to love, accept, and encourage him in his journey. The larger world adheres to a neurotypical standard, and we’re not going to be able to change that – but in our home we can give him a haven to be himself, to recharge and calm down, to be unconditionally loved.

Posted in family life, musings

getting through a bad day

Sometimes motherhood is the hardest thing I’ve ever set out to do. Sometimes I wake up already tired, already touched out from a night of nursing a sick baby, already talked out from a friend’s birthday party the day before, wanting to do nothing but bury my head in a pillow (or maybe a book) and isolate myself from the world around me until my equilibrium has sufficiently recovered. As everyone knows, of course, parenting doesn’t typically allow for such unplanned luxuries.

Sometimes every interaction is a battle not to yell or speak harshly. Sometimes the worst part of me wants to scream until everyone feels as awful as I do. Sometimes I can’t even handle the baby sitting on my lap with a book because I’m so sensorily overloaded that my skin crawls at the touch. Sometimes I pray for peace and gentleness and stumble again into anger the next minute.

Sometimes I look at my child and the tears in my own eyes – at my own imperfection, at the horrible way I’m acting – are mirrored in theirs.

Somehow we make it through the day anyway, with lots of apologies along the way. We get outside, if we can, and the calming influence of the outdoors leads to laughter and connection and positive strength. We read our bedtime books and the kids still ask for their “Pookie kisses” of Sandra Boynton inspiration. I tell them what I saw in them that made me proud, and apologize again, and we snuggle to sleep. And at last, the closeness of their bodies to mine can be felt as love by even my chaotic mental processor.

And I remind myself that these bad days are few, and that tomorrow is another opportunity to be compassionate, gentle, self-controlled, loving, present, and joyful with my children – to put in again the hard work of cultivating the fruit of the Spirit, and hopefully do a better job of it. I will fail, and the kids will fail, and I pray that we will in our failures learn both to be humble and to forgive, both to self-advocate when we are overwhelmed and to serve unthanked when we see others overwhelmed, both to grow closer to God who is alone perfect and who gives unending grace and to grow closer to each other even as our sin threatens to tear us apart.