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!

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?