For the first time ever, I’ve started a pen-and-paper reading journal!
It all began when I was looking for Christmas presents for my kids and found these delightful small-squared graph paper journals with transparent covers – so whatever you draw on the first page would show through and be the cover image. I got a pack for Limerick for his numerical drawings and then added one for myself… and when I found a new pack of my favorite rainbow Signo pens in my stocking from my dad, it was a perfect match.
Over my lifetime I have read thousands of books (estimating from the years I’ve actually kept track). Books are easier than real life: the author filters out most of the irrelevant information from the narrative, internal perspectives provide verification for the emotions being communicated through a character’s body language or tone, and confusing sections can be reread until things make sense while the rest of the book waits. So sometimes it can be a nice escape from the complexities of life to dive into the world of a book – but on the other hand, spending so much time analyzing social interactions in written form helps me to understand them better when I encounter them in the wild, so to speak. There have been countless times when I’ve noticed something happening and thought, “oh! I’ve read about this! What was a helpful response when this happened in the book?” and based my reaction off of what I’ve read.
(The one time someone tried to bully me as a child I thought, “oh, I’ve read about bullies. They are usually sad and insecure people. Poor kid.” I was also highly amused that he though I’d be offended by the name “Four-Eyes” when it was a taunt straight out of the books! How unoriginal!)
Books also help me understand my own emotions. As the characters experience situations and as their emotions are described, I try to put myself in that situation and feel those emotions. This is anxiety: observe the triggers, observe the physical response, observe the words that are used to describe the associated emotional response. This is happiness; this is grief; this is insecurity; this is attraction; this is contentment. I feel things extremely strongly, but I struggle to understand those feelings, and books help me create a reference against which I can evaluate and by which I can name my own emotions as well as the emotions I see in others. And it does this in a safe way, allowing me to proceed at whatever pace I need to, not overwhelming me with sensory input about an unfamiliar or upsetting emotion.
(This is probably why I enjoy books with a lot of emotional content even though I am very uncomfortable with emotional expression in movies or in person. I can take a break if I need to, I can process the emotions slowly and through multiple filters, and I don’t have the intense sensory input of a strongly emoting person to deal with while I’m figuring out what’s going on and why. And I do think it gives me a foundation to work from when I encounter those emotions in the real world, whether in myself or in others.)
So I’m thankful for the gift that books are to me – that on top of the enjoyment of a good story, I have their help in deciphering the puzzle of emotion and social communication, in decoding the physical clues that reveal someone’s feelings, in learning the rules and patterns of social behavior. And that when I need them, they are always there to be my friends.
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: 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.
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!
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
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 😛 )
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"
Speaking of powerful quotes from books, I came across this oneand 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
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.
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 🙂
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 🙂
It’s hard to go wrong with Jan Brett books, in my experience – her stories are humorous and the extra details woven into the side panels of her illustrations add so much to the (already excellent) written words. This book has quickly become one of the boys’ favorites; not only have they been asking me to read it over and over again, but Limerick has also spent time reading it on his own and aloud to me with just a little help. In this story, the forest animals (getting steadily larger) all find a place to snuggle inside the mitten Nicki’s grandmother made for him, until finally even the bear wants to join in!
This is a new book for me, told from the point of view of a little girl who lives with her grandmother and her hard-working mother. There is poverty and loss here – her mother works long hours and comes home worn out, and the three of them lost everything in a home fire (which is why they are looking for a good chair now) – but there is also community, and hope, and love, and happiness. I laughed when the grandma said she feels like Goldilocks when they are trying to find the perfect chair, and I love the picture at the end of the mother sitting in the new chair with her littler girl snuggled up asleep on her lap. It’s just a beautiful picture of life and family.
Patricia Polacco’s autobiographical picture book about her struggle with dyslexia is definitely not a new book for me, but it is for my kids. Rondel especially was deeply affected by the bullying portrayed in the book, by Trisha’s close relationship with her grandmother, and by the encouragement and help she was finally given by her teacher Mr. Falker. It’s a hard book to read, because of the emotional pain involved, and I’m always in tears at the end, but it so hopeful to see the difference one person’s commitment and care can make in someone else’s life.
Most people are probably familiar with The Rainbow Fish, the story of the fish who was so special and beautiful that he became arrogant and selfish and ends up having to give away his shimmery scales to make up for his rudeness and find friendship. It’s honestly not one of my favorite books, because I don’t like the pressure put on Rainbow Fish to give away something uniquely his – he could have said no in a much gentler and kinder way, true, but he still should be allowed to say no without losing his relationships with the other fish. Generosity is a good and beautiful thing when it comes from authenticity; bribing other people to like you by giving things to them is not so beautiful. But maybe I’m just looking at it too cynically.
Ok, I picked this one up on our way out of the library and I haven’t had a chance to read it with the kids (or on my own) yet! But I’m looking forward to it 🙂 We read our first Lionni picture book around Christmas, and I was impressed by the emotional depth of the book (and the illustrations are lovely), so I’ve been wanting to explore more by the author. Given that Rondel’s favorite animal is the alligator, this one seems particularly apropos and I’m excited to read it to him.
My mom gave the kids Tullet’s book Press Here for Christmas, along with its companion, the Draw Here activity book (which I saved for them to open on Epiphany). While they all enjoyed the book, Limerick really fell in love with it – he’ll read the books to himself, re-draw the illustrations on the iPad as he tells himself the story, spend hours doing the drawing activities, and even recreate the story with our brain flake building toys! So when I saw this book at the library I knew I had to grab it, and Limerick loved it as well. I’ve read it to him and let him do the shaking, mixing, etc. – and he’s read it to me and had me follow the instructions 🙂 I need to buy more paint, as ours is about empty, and then I’d love to go through this book with all the sensory texture and messiness of real paint!
After we finished reading The Tale of Despereaux, by Kate DiCamillo, I started looking for other chapter books to read that would be a step above the beginning readers but not too long or complex for a six year old to enjoy. I came across this book on several lists and decided it was worth a try since it’s about dragons and animals (Rondel’s favorites, still) and available at the library 🙂 Although it’s a classic, I’ve never read it, so I’m looking forward to discovering a new great story with the kids.
As a bonus, I found a copy of Jean Vanier’s Becoming Human for myself. I’m hoping to write a lot more about this book after I read it, as well as more about Vanier himself and the L’Arche communities he founded for mentally and intellectually disabled adults, because I haven’t encountered a more hopeful, loving, and godly approach to disability than what I’m starting to discover in his philosophy and work – but I need to learn a lot more before I can really dive into it here.
What books are you reading or looking forward to reading, with kids or on your own? I’d love to hear your thoughts about anything good you’ve been reading lately!
“Eärendil saw now no hope left in the lands of Middle-Earth, and he turned again in despair and came not home, but sought back once more to Valinor with Ellington at his side. He stood now most often at the prow of Vingilot, and the Silmaril was bound upon his brow, and ever its light grew greater as they drew into the West. And the wise have said that it was by reason of that holy jewel that they came in time to waters that no vessels save those of the Teleri had known; and they came to the Enchanted Isles and escaped their enchantment; and they came to the Shadowy Seas and passed their shadows, and they looked upon Tol Eressëa the Lonely aisle, but tarried not; and at last they cast anchor in the Bay of Eldamar, and the Teleri saw the coming of that ship and they were amazed, gazing from afar upon the light of the Silmaril, and it was very great. Then Eärendil, first of living Men, landed on the immortal shores.” – J. R. R. Tolkien, The Silmarillion
Eärendil’s guiding light, the Silmaril, eventually becomes a star giving hope to the people of Middle Earth: it is that star that Sam Gamgee looks up to see from the crooked paths of Mordor, whose light helps him to remember that there are good and beautiful things higher and deeper and longer-lasting than the present evil and suffering. It is the light of that star that resides in Galdriel’s phial – a light, she says, for when all other lights go out, a light that gives Frodo the courage and strength to oppose the giant spider Shelob in her lair.
But it is this story, where it guides Eärendil through all the obstacles in his way to the “immortal shores” of his forbidden destination (forbidden because of the evil of Men and Elves), that comes to mind whenever I hear the phrase “star of the sea” (which I have been a lot, as it appears in the Marian antiphon for the season). Like the Silmaril, Mary can be a light leading us always to her Son, bringing us to His life, reminding us of His presence to give us hope. She is not the giver of life, nor the way through the obstacles, but she guides us to the One who is.
Title: Lithium: A Drug, A Doctor, and A Breakthrough Author: Walter A. Brown Date of Publication: August 2019 Rating: 4 out of 5 stars
Lithium, as its subtitle suggests, tells three interwoven stories: that of the life of John Cade, the doctor who discovered lithium’s most important medical use; that of lithium itself from its first discovery as an element to its recognition as both a drug and a toxin; and that of lithium’s bumpy road to acceptance through research trials, scientists’ feuds, and governmental wariness.
I’m not really that great at looking back or looking forward. I read a lot of C.S. Lewis in my formative years, and I still have his words echoing in the back of my head: Screwtape teaching Wormwood how to enslave men to either the past or future and thus distance them from the present which alone intersects with eternity; the unfallen Queen on Perelandra describing time and circumstance as the waves of the sea into which we plunge as we swim, taking what comes and letting go of what has come before.
However, it can be helpful to look back and see the path I’ve taken – to see evidence of God’s grace, of answered prayer, of comfort in hardship, of blessing and providence in good times – and be reminded of God’s faithfulness. It can be encouraging to see progress made, or convicting to see unhealthy patterns deepening. Similarly, it can be good to look forward, to make goals and resolutions, so that I can prepare well for the future I hope to build.
This year especially is a bit of a landmark, as not only the old year but the old decade comes to a close. Ten years ago – 2010 – I was single, graduated college, moved out, bought my first car, and began working at the university where I am still employed now – so really, the whole of my adult life so far has taken place in the now-past decade, and even the highlights would take far longer than this post to describe.
One of the major highlights of 2019, however, was finally getting diagnosed with autism and having a reason for all the times I’d felt out of place and two steps behind despite hearing from everyone how smart I was, for all the moments I’d been so overwhelmed by a sound or touch that I couldn’t process anything, for all the weird behaviors (now I know they’re called stims) I’d accumulated over my life, and more. This was reflected on the blog – 4 of my top 5 most popular posts this year were from my Autism Acceptance series in April:
That third post in the list above touches on one of the things I’m most proud about this year, actually: the way I was able to identify the onset of seasonal depression and take steps to counteract it. This is the first Christmas in several years that I have only had minor situational anxiety instead of moderate overarching depression, and I think being prepared made a huge difference. It wasn’t the type of preparation that gets me all anxious about making lists and potentially forgetting things; just a conscious choice to let go, to dig deep, to roll the thoughts away, to take things one step at a time, and to center my life on meditative prayer.
What also helped was a chance, at the beginning of December, to bike significantly more frequently. I started biking in to work 1-2 days a week in November, but in December my hours increased (from 8 to 20 per week!) and I needed to commute 4 days a week. That regular time outside exercising is amazing for mental regulation and emotional health, at least for me! And the reason for the change is also something I’m excited about, both for 2019 and going into 2020: I have the chance to learn bioinformatics and transition over the next 6 months from the genomics wet lab team to the bioinformatics team, which gives me a chance to learn something I’ve been interested in for years and develop skills which will be even more valuable for my career.
Outside of work, I’m looking forward to an opportunity to help develop neurodiverse community and support at my church. The woman who’s been running the special needs children’s ministry wants to reshape it to better reflect acceptance and neurodiversity, multiple people have anonymously asked the pastors about ministries specifically for neurodiverse adults, several pastors across our web of churches are working on formulating a theology of disability, and I’m apparently one of the adults they know of who is neurodiverse. Hopefully they will not ask only me, since neurodiversity is by definition diverse 🙂 But I really appreciate that they care deeply about the whole spectrum of the children of God, that they don’t want to make it something that neurotypical people are doing to or for us without our input or leadership, and that I have a chance to be involved!
With all of that said, I have just a few resolutions for the new year.
First, I resolve to pray every day. Things are just better when this happens, like marriage is better when I actually spend time talking with Paul 😛
Second, I resolve to write on this blog more frequently. My goal is approximately every 3 days – so, 122 posts for the year. I have lots of ideas but often don’t post for reasons that don’t make sense outside of my head, so I’m going to try to let go of my perfectionism and just share my thoughts.
Third, I resolve to read a variety of good books and keep a book log again! That was such a good experience in the past and I really need to get out of my fan fiction rut anyway. (I already have two books on my list and I can’t wait to write about them!)
How about you, readers? Any highlights from the year (or decade)? Anything you’re resolving for the New Year or especially looking forward to? Or conversely, any challenges from the past or apprehension about the future? I always love to read your thoughts.