Title: Marcelo in the Real WorldAuthor: Francisco X. Stork
Date of Publication: March 2009
Rating: 4 out of 5 stars
Marcelo in the Real World is a coming-of-age story touching on neurodiversity, ableism, racism, family, ethics, religion, sexuality, and love – in short, all the passion and philosophy of a teenager stepping into adulthood as experienced by a young neuroatypical Latino man. While Stork is not, as far as I can determine, neurodivergent himself, I find Marcelo to be relatable and authentic as a neurodivergent character: from his subtle stimming, to his sensory struggles, to his logical rules-based method for deciphering people, to his thoughts on life and faith and God. And, quite satisfyingly, the resolution of his story does not come with a cure or a fix for his differences: just an increased understanding of who he is and a vision for living in the “real world” as someone who doesn’t quite fit.
Title: The Boy Who Steals Houses Author: C. G. Drews Date of Publication: April 2019 Rating: 4.5 out of 5 stars
So I have to admit that I have a not-so-secret love of angst, longing, and heartbreak in the books I read. Every time I read a story of someone searching for family, home, acceptance, love, etc., and especially of working through the challenges of trusting in those things when they show up, it hurts my heart in such a hopeful way. I remember back in high school telling my dad that I just wanted to feel like I belonged somewhere – like there was someplace where I could be completely exposed and still be completely accepted – and I think it must be a fairly common human desire because so many books touch on it. In The Boy Who Steals Houses, C. G. Drews beautifully describes both that longing and the thing itself: the desire to be loved unconditionally, and the shapes that unconditional love can take in very imperfect people and circumstances.
I can’t think of another book I’ve read that looks at autism from the outside (the main character, Sam is not expressly autistic – his brother Avery is) with such tenderness and acceptance. Sam gets frustrated with Avery and Avery gets frustrated with Sam, like any two siblings, but they love each other so fiercely, so intensely, with such mutual protectiveness. Sam tries to protect his big brother from a world that doesn’t accept or even care to understand his autism; Avery tries to protect Sam from his own anger and from the justice system. Avery stims; Avery gets overwhelmed; Avery has meltdowns and has to be rescued and pulls Sam in to the lowlife world he’s ended up in; and through it all Sam just loves and loves and loves him – and Avery loves him back. At the beginning of the book, since it’s told through Sam’s perspective, most of the narrative is showing Sam’s love and care for Avery; by the end of the book (letting the reader realize it along with Sam, I believe) the narrative shows also how Avery has always been there for Sam loving and caring for him as best he could, through all the bad decisions they’ve both made and all the bad things that have been done to them.
But Sam is really the heart of this book, with his anxieties and his desperate longing for home and family and acceptance and belonging and love. I was instantly drawn in to his story; I’ve read it twice already and will probably read it again since I can’t get him out of mind (and since Drews ended on what was essentially a cliffhanger!). To be seen and known and loved no matter what – that is the treasure Sam is searching for, and the book holds out hope that he may finally find it.
The only reason I’m not giving the book 5 stars is that the writing was a bit over-dramatic at times. Sometimes the stylistic effects really contributed to feeling the characters’ emotions; other times they seemed over the top (but that may just be due to my own intense discomfort at overtly expressed emotion). Oh, and the ending 🙂 If only a sequel were forthcoming!
C. G. Drews has written one other book, A Thousand Perfect Notes, which I have not read (I’m still too caught up in the lives of these characters to move on!). She just posted a Q&A post celebrating the one-year anniversary of The Boy Who Steals Houses that is great in itself and also links to an article she wrote about writing #ownvoices fiction and autistic representation in fiction specifically, which I found to be quite good.
Title: An Unkindness of Ghosts Author: Rivers Solomon Date of Publication: September 2017 Rating: 3 out of 5 stars
An Unkindness of Ghosts is not an easy book to read, because the themes it tackles are some of the hardest for humanity to acknowledge and contemplate. I have rarely, in fiction, encountered such a blunt portrayal of normalized oppression, institutionalized poverty, and systemic racism. Yet I find myself unable to claim that Solomon’s portrayal is unrealistic or unbelievable, because I have seen these very things in many times and cultures and places in the pages of history (not excluding our present time). While the setting is pure science fiction (the novel takes place on an enormous spaceship hundreds of years into exile from a dying Earth), the targeted cruelty and indifferent hatred are innately human in the worst sense of that word.
At the beginning of the book, I wondered if perhaps the story was attempting to touch upon too many themes – if the plot and the characters would fall flat under the weight of a treatise or an essay. After the first few chapters, however, circumstances and conversations began to carry the weight of the book, displaying the multiple disparate avenues oppression and bigotry can travel, and giving a painful, complex view into what intersectionality of marginalization can look like. Aster, the main character, is autistic, female (though not gender-conforming, and other characters bend gender lines even more), dark-skinned, and lower class. The people around her, (in general, except for the most powerful on the spaceship), share in at least one of those, and the group dynamics of oppression as well as the individual dynamics are illustrated poignantly and play an important role in the story. And through all of that – through oppression so strong that the hopelessness of it seeps into everything – the plot races ahead, through mystery and romance and rebellion, drawing the reader along.
Since my focus for this month is on autism, I want to specifically address Aster’s autism in the novel. We get to see it from the inside, mostly: a holistic way of being, something that affects the way Aster holds her body, the way she absorbs and evaluates information and sensation, the way she speaks, the way she seeks to understand her own emotions and the words and gestures and intentions of others. I think this aspect of the novel is so well done – to show what being autistic actually means for the person with autism, and writing her actions based on who she is as a person instead of just putting “autistic behaviors” on top of a character who is otherwise coming from a neurotypical perspective.
So why, with all of this good to say about the book, did I only give it 3 stars? Well, it’s rather a personal reason. It left me very unsettled, and not all in the good sense of having been forced to look at unpleasant realities and acknowledge them. Mostly, it didn’t seem like there was any enduring or objective good to hope for – just the indomitable spirit of those who would rather die fighting than give up, and a shot in the dark of space for home and life. Also, there was more vulgarity and sexual content than I prefer to read – some of which was important, and some of which seemed to be excessive (but again, that’s my opinion). Anyway, while I think the novel is important and I’m glad I read it for multiple reasons, I don’t think I’ll read it again, which (since I am an avid re-reader) is one of my criteria for getting 4 or 5 stars.
This is Rivers Solomon’s debut novel. For more information about them and their writing, visit riversolomon.com. In addition, I really enjoyed this interview from Black Warrior Review where Solomon discusses their writing and reading processes.
If a life-disrupting pandemic had to come at any time, I am glad it chose to arrive in Lent.
Lent is the season in which the Church encourages us to make a concerted effort to strive against our vices and turn away from temptation – to go above and beyond in seeking holiness. And yet, while the practices of prayer and fasting and giving certainly help us grow in virtue, Lent isn’t about the success of our own striving, the achievements of our own strength. In fact, it’s quite the opposite. Lent is about trying so hard to follow God that we reach the point where we find our strength to be insufficient, our virtue too weak, our will too easily persuaded by the siren call of sin – because it is at that point that we, pinioned between the laws of the fast and the temptations of the flesh, between God’s standard of holiness and our own weakness, have no other recourse than to cry to God for help. In brief, Lent forces us to turn to God.
And when the threat of sickness and economic instability comes tearing through the world, with all its concomitant stress on the fault lines already present in society and all its strain on each individual in their own way, that posture of turning towards God is exactly the response we need. And here we are, already practicing it, already trying to make it a habit, just in time to deal with something more! If I have learned to come to God and fill my spirit with prayer when my body is hungry from fasting, it is easier to come to God with my anxiety and receive His peace and presence when I am tempted to distract myself with the constant noise and bustle of social media or the news or games on my phone.
There is also this reassurance, of which Lent reminds me, that God also has experienced suffering and hardship in this life. He is not ignorant of the emotional responses natural to humanity; he knows them from the inside. And he chose to face them, without taking the way out of comfort or escape from men or angels, that we might have the hope of eternal life in him. It is a hope we can cling to; it is an example we can strive to emulate; it is a strength and a grace that can keep our feet from falling.
Visit This Ain’t The Lyceum for more on Good Friday and Easter, including this: “It is from the darkest and most uncertain of times that we are made new.”
Title: Planet Earth Is Blue Author: Nicole Panteleakos Date of Publication: May 2019 Rating: 5 out of 5 stars
I wasn’t sure what to expect when I began reading Planet Earth Is Blue, the story of a largely nonverbal autistic tween in foster care. I was apprehensive about stereotypes, afraid that situations would be overblown, worried that the book would be poorly written (when I have high hopes for a story, I also tend to have a lot of nervousness about it!). But what I found was an deeply moving story of a girl navigating a difficult time of life, seeking stability in an unstable environment, struggling to communicate, and learning about the kind of love that sees the beloved for who they truly are and fights to help others see and understand them as well.
I read it all in one day, in 5-10 minute snatches as I worked, going so far as to set up my phone on the lab bench to catch the next sentence in between pipettes. (This is not recommended best practice for either lab science or book enjoyment. I just couldn’t put it down.) I cried at least three times and was very thankful my coworker happened to be on the other side of the lab. And at the end, through all the hurt and misunderstandings, there was hope (which I think is particularly important as this book is aimed at the 11-14 year old age group, and when kids that age find a character they identify with they need to know that there is hope for kids like them even when life is hard).
The story begins with our protagonist, Nova Vezina, waking up in the home of her new foster family, having run away from her previous home with her older sister, and missing said sister profoundly. As the story alternates between third person descriptions – often including flashbacks and memories triggered by events in the primary narrative timeline – and first person letters written by Nova to her sister, powerful messages about ableism, humanity, family, and love come to life on the page. Early in the book, for instance, Nova writes,
"I know you always say 'Foster families are not forever families' and 'We should not get attached,' but I think you might like Francine. She talks to me the way people talk to you. Not too loud and too slow, the way they talk to me.
"She talks like I am a person."
Throughout the book, Nova’s feelings, sensory processing, and behaviors – the things that bother her, the things she gets excited about, the stimuli that overwhelm her, her physical expression of all these things – are presented authentically and seriously. They are just as real as any “normal” character’s emotions would be in any other book, and just as deeply important to her. Instead of fitting into the constraints of a stereotype, Nova appears the way a real person does: emotionally complex, internally conflicted about herself and her situation, and passionate about the things and people she loves. We can feel her joy rising like a rocket when she gets to experience the planetarium for the first time, or the deep pit of anxiety when she breaks a toy bound up with personal meaning. The slow buildup of sensory and emotional overwhelm are both portrayed with not only technical accuracy but a style that places the reader in the moment with Nova, seeing and experiencing life from her perspective. And her perspective is never cheapened or flattened.
Nicole Panteleakos drew on great depths of experience with autism to write Nova’s character; diagnosed with autism and OCD herself as an adult, she also worked for years teaching creative writing and communication to autistic kids with limited speech and volunteered with autistic children in various programs and through foster respite care. Additionally, she had multiple autistic tweens and adults read through her drafts to help ensure Nova wouldn’t fall into stereotypes or caricatures. Her exposure to the breadth of the autism spectrum as well as her personal insider’s understanding of it enabled her, I believe, to craft a genuinely human autistic protagonist, unlike any I have encountered from a neurotypical author.
Panteleakos’s Author’s Note at the end of the book also deserves a special mention, being everything I always loved about author’s notes when I was in the target age group for this book (and still love today, to be honest). However, you’ll have to read the story first and discover this on your own 🙂 But with a character like Nova, and with all she gets to experience of unconditional love and belonging as she works to process and overcome not her disability but the challenges of her circumstances, there are countless other reasons to read this book, and no reasons to wait.
As far as I know this is Panteleakos’s first book – I hope she writes more in the future! She does have an excellent article about writing Planet Earth Is Blue that touches on some of the experiences that influenced the book as well as the value of autistic representation in fiction.
Aubade (who loves all things sparkly and frilly and fancy) discovered today the few formal dresses I have saved over the years, and convinced me to try one on. She was really rooting for the wedding dress, but putting that one on is not a one-person endeavor, so I ended up in a navy blue full-length gown from high school.
I am still surprised I managed to put it on; my ribs are definitely wider post-pregnancies. And it felt far more elegant than I remembered, which was nice. But the best part was when I walked out wearing it and Aubade was overwhelmed with delight that Mommy was wearing a pretty dress like she was and Limerick ran to me instantly to exclaim over the dress and claim a hug. I was reminded of the time my mom dressed up in the most gorgeous burgundy outfit with sheer sleeves for a fancy event with my dad – how I thought she was just the most glamorous and beautiful person I’d ever seen, and how it made me so happy to see her so beautiful, like my heart swelling inside me. And now somehow I found myself in her role in the cyclical drama of life, the mother instead of the child, the familial archetype for human beauty as well as human nurturing.
I’m still figuring out where it comes from, this child’s joy in seeing their mother beautiful. I remember feeling it quite strongly; I could tell my children felt it, as they demanded I not change back into normal clothes even when I had to do dishes and get ready for work; but I’m not quite sure of the source. My guess is that it has something to do with the overflowing love a child has for their mother, because when a person loves someone else they delight in that person’s beauty.
And knowing my children have this deep unconditional love for me, as children typically do for their parents, makes me want to be beautiful in character and not just in appearance, to be truly worthy, somehow, of this love pouring itself out for me for these short years of childhood. If it takes dressing up more frequently to remind myself of this, then (despite my love of the comfortable and casual) I am all for it.
In the midst of all the covid-19 craziness, life goes on. It’s still Lent, for about another week, and there will still be Easter, and it’s still Autism Acceptance Month now that it’s April! This year, my focus will be on books of fiction written by and/or containing autistic main characters.
Why fiction? There are a lot of good memoirs written by autistic individuals, and non-fiction books addressing autism, but fiction in particular taps into the imagination and vision of the reader. It opens up new perspectives and potentials, allowing the reader to enter into new worlds, relationships, and experiences. So for the neurotypical reader, encountering autistic characters in fiction (assuming they are well-written!) can make autism understandable, relatable, and more human, which will then hopefully translate to the real world. For the autistic reader, those characters can give them people to identify with when they may be surrounded by neurotypical society in real life and in most books.
Another advantage of fiction is that it is more likely to be read by people who aren’t interested specifically in autism – at least not enough to seek out a non-fiction book on the topic – but who are looking for a good story to immerse themselves in. In this way, books with autistic characters can help bring awareness and acceptance of autism to a more mainstream audience.
It’s not so helpful, however, to read fiction with autistic characters if those characters are stereotyped, flat, or defined by their atypical behaviors rather than shown authentically as human beings with complex internal lives and emotional ranges. For that reason, fiction written by autistic authors is particularly valuable, as these authors tend to have more reliable insight into the processing and perspective of autistic characters than neurotypical authors have. It is possible for non-autistic authors to write autistic characters well, of course, and I think it’s important for fiction writers to try to write from a variety of perspectives, but in my experience autistic characters written by autistic authors are much more accurate to life and multi-dimensional.
For those reasons, most of the books I’ll be reviewing this month are #ownvoices autistic fiction – books with an autistic protagonist or important secondary character written by an autistic author – and the exceptions will fit into either one or the other of those categories. I’ve written three reviews already, I’ve read two more books that I need to write up, and I have 2-3 more in reserve – but if you have any suggestions of books you’ve loved or that sound interesting, please let me know! It was difficult to find books in this category and so I’d love to be able to put together a more comprehensive list by the end of the month.
I’m linking up with Kelly again this week – head over and check out the rest of the linkup!
I asked Limerick the other day what was, in his opinion, one of the neatest things he knew about math and numbers.
In response he told me he thought the neatest thing was that if you start with the powers of 2 (say, 128 for example) and kept dividing by 2 (32, 16, 8, 4, 2, 1, 1/2, 1/4, and so on, he said), you would go on forever and never actually reach 0.
Basically my five year old uncovered on his own the concept of an infinite series approaching a limit and (very naturally!) decided it was just about the coolest thing numbers do. I love how his brain processes numbers and analyzes the world in their light!
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.
I tend to use field trips and excursions (and even errands!) quite liberally with the kids: as a way to break up a long day, cut through moodiness, provide structure, and create enjoyable and educational experiences. So being stuck at home all day, every day, has been a bit of a challenge – though I’m sure not nearly so much of a challenge as it is for parents accustomed to being away from the children most of the day. I’ve been aiming for one new or different activity each day to break up the routine, and we’ve been diving more deeply into some regular activities as well. For your inspiration, here are a few of the highlights!
The Dome Tent: we have a climbing dome out back, and the boys helped me move it into the lawn and cover it with sheets (using chip clips!) to make a tent! The kids hung out in it, hung upside down in it, and hung in a swing from the center of it (I put the swing up after I took pictures, but it was Aubade’s favorite part). It needed more openings so the breeze could keep it cool in the sun, though 🙂
Water (and mud): with a sprinkler and some pipes, the boys discovered how water pressure can force water up through a vertical pipe, how the water will seep out of any crack when two pipes are joined, and how to make the water spray everywhere by blocking part of the opening and thus increasing the pressure. They also filled their pipes with muds and pretended they were magic mud sticks.
Custom Pancakes: We eat pancakes a lot, but we’ve been eating them even more recently, because I started making them look like letters (for Rondel), numbers (for Limerick), and cute animals (for Aubade)! I love when the kids eat pancakes because my recipe is 100% whole grain with no added sugar and a secret addition of some type of vegetable. These days we’ve been using up the frozen pumpkin and butternut squash from last summer’s harvest, but carrot is also good, as is a half and half blend of spinach and banana (for quite vibrantly green pancakes that are amazing with chocolate chips and walnuts mixed in!)
Lots and lots of reading! All the kids are starting to get excited about reading, and it makes more reading possible when I’m not the only one who can do it (my throat does get tired, and also now we can rotate who is listening so everyone gets a chance to not be just listening). Aubade has memorized Old Hat, New Hat by the Berensteins and likes to read it multiple times a day; Rondel puts so much expression into the words that it’s like listening to a dramatic audiobook with all the added nuance and humor he conveys; and Limerick is beginning to devour everything he sees with the craving of insatiable curiosity and an intensity bordering on perfectionism. We’ve spent hours just reading out loud to each other (I read the entire The Lion, The Witch, and the Wardrobe just this week out loud to Rondel, just by way of example…)
Uno: the boys very recently discovered the card game Uno and have been wanting to play it all day every day. I’ve been using it as an incentive, or to give rhythm to the day: I’ll play three games of Uno now, but then I’d like you to exercise your body before the next set of three, or exercise your mind with reading or with math. We talk about the importance of using our minds and bodies and stretching them to do hard things, and then break up those more challenging things with some fun and relaxing Uno games, and it seems to be working well for now.
Leaf Rubbing: To get some outdoor time and for a unique art project, we took a walk around the block collecting interesting-looking leaves as we went. Our neighborhood is rather weedy, so we were able to get a wide variety of leaves while only pilfering a very few more cultivated plants reaching out over sidewalks 🙂 And of course we had some good leaves to use from our own plants also! Once we got back, we laid them out on the counter, covered them with plain printer paper, and rubbed crayons over the paper to generate the impression of the leaves below. Juniper wasn’t as spectacular as I’d hoped, though it was still good, but the Hong Kong orchid and mallow leaves were stunning. And Rondel used black crayon over a longwise half of a wild arugula leaf to make something that resembled a jagged blade.
Costumes: one day, we pulled down the box of old Halloween costumes and had fun dressing up and playing pretend as the various animals and conglomerate creations to be had there. Rondel loves his alligator outfit the most, while Aubade prefers to rotate through all the options (and her princess dresses) rather rapidly…
Between all these things and more (and I have more ideas stockpiled for the next idle moment!), we’ve managed to keep TV time to a minimum without getting cabin fever from being cooped up in the same place for so long. I’ll definitely be glad when the libraries and museums and zoos are open again, but I’m not going to jeopardize the health of my community over boredom or frustration. Instead, I’m going to treat it as an opportunity to creatively connect with my family even more than normal.
I’m linking up with Kelly atThis Ain’t the Lyceum today if you want to join the linkup! She’s posted a few times in the past week or so with helpful and humorous thoughts about isolation and quarantine (with two medically fragile kids, she’s been less complacent about it than a lot of people).
How have you been handling isolation or social distancing? Especially those of you without backyards or easy ways to get time outside, how have you managed to create a sustainable new rhythm of life?