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 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.

Posted in family life

holding open doors of possibility

Rondel loves the zoo. I think he would want to go there almost every day (some days have to be for Grandma’s house) if possible, and he never wants to leave no matter how long we’ve been there. There are always more animals to see, more wonders to explore, more facts to learn. As much as he enjoys the splash pad, he always asks to see another exhibit instead, despite the heat, until I mandate a water break on behalf of his siblings.

So I thought to myself, I wonder if the zoo is doing any summer camps? Rondel will probably still be too young, but I can still see what’s available. Blithely thinking these things, I went onto their website and discovered that Rondel is not too young by any means, and would be eligible to attend a half-day camp focusing either on animal stories or animal art.

Part of me leaped up in excitement! He loves the zoo! What a great opportunity! How awesome would it be to get to spend that much time at the zoo, talking about animals, looking at animals, surrounded by people who also love animals! What a chance to try to integrate with a group of peers, in an environment without a parent, to stretch his comfort zone and expand his social skills! And oh… what about dealing with loud groups, bright sunlight, the challenges of speech articulation delays, and the anxiety of the unknown? This is, after all, the boy who struggles in a typical Sunday school classroom even with a personal aide, and the boy who cries at the park if he turns around and can’t see me – even if I haven’t moved from where he left me. Would a summer camp be an adventure or a nightmare?

My husband had the wisest words about this dilemma, about the dichotomy between excitement and fear: that if we, as Rondel’s parents, make a decision for him based on our fears of what might happen, based on what we think his limitations and struggles might be, than we are placing that limitation on him instead of giving him a chance to grow and soar and potentially surprise us all with his abilities. We would need to plan well for it, obviously, to give him the best possible chance to succeed and to give him a way out if it proved to be too much, but it would be foolish – especially in the long-term – to simply close this door because we fear he will fail.

It reminded me of a passage from (you guessed it!) Differently Wired. (Reber really seems to have covered everything. I promise I didn’t begin writing this post trying to sneak a quote in!)

“Choosing fear equates our child with their diagnosis, rather than seeing them as creative beings who are here to shake up the world in their own magnificent way. Choosing fear is the very thing that keeps us stuck. Choosing fear creates a culture of apprehension and anxiety in our families, and affects the way our children, many of whom are already highly sensitive and anxious, feel about themselves. Operating from fear leads to more limited thinking and fearful energy, which both we and our child will feel, and less chance of our child’s uncovering and experiencing their extraordinary possibilities. It’s the epitome of a self-fulfilling prophecy.”

Instead of choosing to direct my child away from opportunities and experiences because I’m afraid they’ll be too hard for him, I am choosing to present him with the options and let him come to his own informed decision – and then, I am choosing to support him through the results of that decision, even if they prove to be difficult or unpleasant. That is the process that will help him grow in self-awareness and confidence, that will help him develop autonomy and independence, and that will therefore help him grow into greater possibilities instead of holding him back in a box created by my own anxious and limited imagination.


If you liked the quote from Differently Wired, read my brief review of the book here and check back in June for the giveaway!

Posted in musings

pastor barbara and the out-of-sync girl

Once upon a time there was a church which had a female pastor. Now, this pastor wasn’t the lead pastor, or even the primary teaching pastor; she led the family and children’s ministries, actually, and spent most of her ministry time with women and youth. But she had the title of pastor – Pastor Barbara.

She was beautiful. She had long, curly brown hair and a nose with that perfect spark of defiance bringing its straight lines singing up from her face. She had a gentle way of moving – never too fast or too sudden – and a gentle way of speaking – never too loud or too harsh. And when she saw the children she loved and taught and prayed for, her whole body would glow with that love and light, like an emanation of the Holy Spirit through her presence.

There was a small girl at this church who adored Pastor Barbara wholeheartedly and unstintingly, although mostly from a distance as she was a quiet child. She enjoyed above all the new songs that Pastor Barbara would sing with them! For her, songs were a release from the uncertainty of social interactions, because the songs (at least the children’s songs that she knew) would specify how you were supposed to act. Take for example “Father Abraham:” no one would ever move that way in everyday life, but the song says to do it so everyone does it and no one has to worry about being out of sync.

Continue reading “pastor barbara and the out-of-sync girl”

Posted in family life

little problems, big feelings

We had some frustrations, today, as we went about our normal adventures.

Someone was upset to the point of tears because the cars in the lane next to us were moving and we weren’t and this child didn’t understand why (they had a left turn arrow…).

Someone broke down because their brother finished the bag of goldfish, even though they’d been able to eat an equal amount.

Someone sobbed and wailed in the grocery store because they were thirsty but didn’t want to drink from the water fountain.

Someone screamed and threatened because their brother put in the puzzle piece they wanted to do (make that two someones…)

Someone ran across the playground hiding their face in their hands because I wouldn’t let them push another kid off of the equipment they wanted to use.

Honestly, most of these moments involved fairly trivial triggers, at least from my perspective. It’s been a long time since forgetting a cup for my water and having to use a fountain instead brought me to tears… But for my children, these “little” things have a big impact. Something in their world isn’t functioning the way they expect or want it to, and it throws everything off kilter emotionally.

And when it does, I have the incredible privilege of being able to support and comfort them without being pulled underwater by my own equally strong emotions, since the things that bother them no longer affect me in that way. I can be the pillar of strength and the promise of unconditional love in those moments when they are falling apart, using those struggles as an opportunity to connect with them and deepen our relationship, instead of mocking or shaming them for “overreacting” to something so small. All I have to do is remember how vastly different their perspective is from mine, how much less experience they have to understand the world around them, and how little control and independence they have in their lives, and respond to them accordingly.

Posted in musings

thoughts on humanity

The single most important thing about any person is their humanity.

No matter what other characteristics define them – their race, gender, age, neurotype, health, sexual preference, career, level of education, immigration status, religion, whatever – every single person is human, and by virtue of being human they are entitled to respect and dignity.

Years ago, I stumbled across a few MRA and white supremacy outposts online; I remember reading through their blog archives in a kind of shocked daze, disbelieving that people could actually hold the opinions presented there. Authors attempted to use social and biological science to prove racist tenets, or to claim the superiority of the “alpha male” type over women and more “feminine” men (often just decent and courteous men). Careful rational examination of their source material could show where they were wrong, but the sheer volume of output would make that a full-time job – with little or no reward, given that they’ve already shown their disregard for real science or actual facts.

Since then, the hidden (and not-so-hidden) biases against the old and sick (e.g., assisted suicide), the LGBTQA community, the homeless (e.g., park bench design), illegal (and often legal) immigrants, and Muslims have risen and fallen through the headlines of the news cycle. Every time there is a group of people who try to make themselves appear and feel superior and, more malevolently, entitled by virtue of that superiority to demean, belittle, and discriminate against groups they deem inferior. We, the employed, do not wish to see or even think about the unemployed; we can provide for ourselves, they cannot so they must be lazy and shiftless, and thus do not even deserve to sleep on a bench where we might see them. We, the citizens, obviously deserved to be born in this nation with all the opportunities we have; those immigrants who were so stupid as to have been born elsewhere shouldn’t be allowed to come here and steal our opportunities. We, the heterosexual, are so uncomfortable with trans and homosexual individuals that we must clearly be the only natural and moral beings here – never mind our promiscuity and infidelity, we are the ones following God’s sexual plan for humanity, and those who disagree should be silenced and kept apart from each other.

And recently, as I’ve been reading through the online communities dedicated to respectful parenting and disability advocacy, I’ve begun to encounter childism and ableism in all their ugliness.

This week, when the horrible story of the Turpin family came to light, the comments I read on the New York Times were straightforward and predictable: this is why homeschooling should be prohibited, or, at least, more strictly regulated. My own coworkers have made the same comments in response to the simple fact that Arizona requires no academic testing of homeschooled students. Similarly, in the past, when horrible stories of bullying or sexual abuse perpetrated by teachers have surfaced, or when poor curriculum choices are exposed, the comments in the homeschooling community are equally predictable: this is why you should never send your children to public school! The issue at the heart of many of these comments is: who is entitled to control children. Does the state get to control children’s activities, in an attempt to create productive future citizens? Or does the family get to control their children, as the creators of and providers for those children during their development? In other words, both sides are coming from a position of childism, even as they claim to have children’s best interests at heart.

The whole philosophy of unschooling, in contrast, rests on the premise that children are not partial persons, or potential persons, but full persons deserving of the same respect and autonomy as adult persons (recognizing of course their individual needs and limitations). As fellow humans, they should have freedom to pursue their own interests and develop their own talents, instead of being forced into a one-size-fits-all standardized education or into the molds envisioned by their parents. They should have the liberty to use their time as they choose, to eat the foods they like when they are hungry, to sleep when they are tired, to play outside learning to control their own words and actions instead of sitting inside following adult directions all day.

(If you instantly picture children running wild, gorging on junk food, playing violent video games, watching stupid cartoons, and staying up all night, you may have some internalized childism or an incomplete understanding of unschooling. Children who are exposed to beauty and goodness, and given the opportunity to develop maturity and moral character, will resonate with those things just like adults will, since they are equally made in the image of the God of beauty, righteousness, and truth.)

But even in the unschooling community, there is uncertainty when it comes to children with special needs. Since my son most likely has autism or another developmental disorder, I noticed the number of parents commenting that they were unsure of how to maintain that level of freedom and respect while making sure that their children accessed all of the “services” and therapies needed to help them fit in and appear neurotypical. I noticed it even more in the public school setting, where an extremely strong emphasis was placed on accessing services now so that my son would be “caught up” to his peers in time for kindergarten. I picked up on it in the special needs ministry at my church, when the parents’ support group had a meeting about “grieving” over your child’s autism diagnosis as if there was some loss to you in not having a neurotypical child. And I discovered it for myself when I found a thousand support groups for parents of autistic children but hardly any communities for autistic adults. Their voices went unheard.

And in some dark corners of the Internet, some people made it even worse by painting adults with Asperger’s/autism as narcissists and psychopaths, incapable of parenting without emotionally neglecting or abusing their children, and inherently capable of committing the next mass shooting. Maybe they vented some frustration or boosted their own sense of self-worth by saying these horrible and untrue things about others, I don’t know. But I don’t really care. I think of Morenike, the autistic mother of autistic children who loves and advocates for them fearlessly and tirelessly, and who almost had her children removed several years ago, and I wonder what role this type of ableist stigma played in her situation.

And I am thankful beyond words for Ally Grace, another autistic mother of autistic children, who is an unschooler on top of that, and whose stories have helped give me the courage to let my children develop at their own pace and in their own way, with the pressure of needing to conform to some external, arbitrary, socially-defined metric – as well as the courage to be an unschooling parent despite my own social limitations.

I think as all the different “-isms” of discrimination come to light, society will slowly be forced into being more respectful and more accepting of those who are different, of those who may need more help or accommodation given the way the world is set up, but in the meantime there is a fairly vicious backlash of those who seem to think accepting the other somehow diminishes their own status or worth. They are the ones who create the websites in the dark underbelly of the Internet, and they are wrong. To receive another human being with dignity and respect, with courtesy and kindness, regardless of the differences between you and them, allows your own humanity – the image of God within you – to shine forth in beauty and power, even as it elevates their humanity. We can ascend together; we do not need to climb to the heavens on the downtrodden backs of the other.